1
|
Barlati S, Innamorati M, Vita A, Nibbio G, Erbuto D, Sarubbi S, Del Vecchio V, Luciano M, Sampogna G, Abbate-Daga G, Carmassi C, Castellini G, De Fazio P, Di Lorenzo G, Di Nicola M, Ferrari S, Goracci A, Gramaglia C, Martinotti G, Nanni MG, Pasquini M, Pinna F, Poloni N, Serafini G, Signorelli M, Tortorella A, Ventriglio A, Volpe U, Fiorillo A, Pompili M. The interplay between childhood trauma, hopelessness, depressive symptoms, and mental pain in a large sample of patients with severe mental disorders: A network analysis. J Affect Disord 2025; 380:545-551. [PMID: 40180038 DOI: 10.1016/j.jad.2025.03.185] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/11/2024] [Revised: 03/28/2025] [Accepted: 03/30/2025] [Indexed: 04/05/2025]
Abstract
BACKGROUND Mental pain represents a significant risk factor for suicidal behavior in severe mental disorders. The present study aims to investigate the interplay between childhood traumatic experiences, hopelessness, depressive symptoms and mental pain, using a network analysis approach in a large transdiagnostic sample of participants living in the community. METHODS The present investigation was conducted using data gathered in a multicentric observational cross-section study organized as a joint project, including different Italian research and clinical settings. Considering the assessment tools adopted in the study, 12 different variables were included as nodes in the EBICglasso network analysis. Stability of the edges and of centrality indices were assessed using bootstrap procedures, considering case-dropping and node-dropping procedures. RESULTS A total of 2147 participants were included in the analysis. Mental pain represents a central feature in a complex network of relationships, including traumatic experiences, hopelessness, and depressive symptoms. More in deatail, mental pain and, to a lesser extent, affective and cognitive depressive symptoms emerged as the most central and influential nodes of the network, highlighting the strong link existing between these aspects and their importance in the lives of people with mental disorders. CONCLUSIONS Results confirm the importance of mental pain as a transdiagnostic feature, requiring careful assessment and consideration in all patients, beyond the diagnostic categories and regardless of suicide risk. Assessing and managing the presence and severity of mental pain should be taken into account in clinical practice, in the perspective of providing significant clinical benefits, as well as relevant research insight.
Collapse
Affiliation(s)
- Stefano Barlati
- Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy; Department of Mental Health and Addiction Services, ASST Spedali Civili of Brescia, Brescia, Italy
| | - Marco Innamorati
- Department of Human Sciences, European University of Rome, Rome, Italy
| | - Antonio Vita
- Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy; Department of Mental Health and Addiction Services, ASST Spedali Civili of Brescia, Brescia, Italy
| | - Gabriele Nibbio
- Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy.
| | - Denise Erbuto
- Department of Neurosciences, Mental Health, and Sensory Organs, Faculty of Medicine and Psychology, Suicide Prevention Centre, Sant'Andrea Hospital, Sapienza University of Rome, Rome, Italy
| | - Salvatore Sarubbi
- Department of Human Neurosciences, Sapienza University of Rome, Viale dell'Università, Rome, Italy
| | - Valeria Del Vecchio
- Department of Psychiatry, University of Campania "L. Vanvitelli", Naples, Italy
| | - Mario Luciano
- Department of Psychiatry, University of Campania "L. Vanvitelli", Naples, Italy
| | - Gaia Sampogna
- Department of Psychiatry, University of Campania "L. Vanvitelli", Naples, Italy
| | - Giovanni Abbate-Daga
- Eating Disorders Center, Department of Neuroscience, University of Turin, Turin, Italy
| | - Claudia Carmassi
- Psychiatric Clinic, Department of Clinical and Experimental Medicine, University of Pisa, Pisa, Italy
| | - Giovanni Castellini
- Psychiatry Unit, Department of Health Sciences, University of Florence, Florence, Italy
| | - Pasquale De Fazio
- Psychiatric Unit, Department of Health Sciences, University Magna Graecia, Catanzaro, Italy
| | - Giorgio Di Lorenzo
- Department of Systems Medicine, University of Rome Tor Vergata, Rome, Italy
| | - Marco Di Nicola
- Department of Neuroscience, Section of Psychiatry, Università Cattolica del Sacro Cuore, Rome, Italy; Department of Psychiatry, Fondazione Policlinico Universitario Agostino Gemelli IRCCS, Rome, Italy
| | - Silvia Ferrari
- Department of Biomedical, Metabolic and Neural Sciences, University of Modena and Reggio Emilia, Modena, Italy; Dipartimento ad Attività Integrata di Salute Mentale e Dipendenze Patologiche, AUSL- IRCCS Reggio Emilia, Reggio Emilia, Italy
| | - Arianna Goracci
- Department of Molecular Medicine, University of Siena, Siena, Italy
| | - Carla Gramaglia
- Department of Translational Medicine, Università del Piemonte Orientale, Novara, Italy; Psychiatry Division, Azienda Ospedaliero Universitaria Maggiore della Carità, Novara, Italy
| | - Giovanni Martinotti
- Department of Neuroscience, Imaging and Clinical Sciences, University "G. D'Annunzio" of Chieti-Pescara, Chieti, Italy
| | - Maria Giulia Nanni
- Department of Neuroscience and Rehabilitation, Institute of Psychiatry, University of Ferrara, Ferrara, Italy
| | - Massimo Pasquini
- Department of Human Neurosciences, Sapienza University of Rome, Rome, Italy
| | - Federica Pinna
- Section of Psychiatry, Department of Medical Sciences and Public Health, University of Cagliari, Cagliari, Italy
| | - Nicola Poloni
- Division of Psychiatry, Department of Medicine and Surgery, University of Insubria, Varese, Italy
| | - Gianluca Serafini
- Department of Neuroscience, Rehabilitation, Ophthalmology, Genetics, and Maternal and Child Health, Psychiatry Section, University of Genoa, IRCCS San Martino, Genoa, Italy
| | - Maria Signorelli
- Department of Clinical and Experimental Medicine, AOU Policlinico Hospital, University of Catania, Catania, Italy
| | | | - Antonio Ventriglio
- Department of Clinical and Experimental Medicine, University of Foggia, Foggia, Italy
| | - Umberto Volpe
- Unit of Clinical Psychiatry, Department of Neurosciences/DIMSC, School of Medicine and Surgery, Polytechnic University of Marche, Ancona, Italy
| | - Andrea Fiorillo
- Department of Psychiatry, University of Campania "L. Vanvitelli", Naples, Italy
| | - Maurizio Pompili
- Department of Neurosciences, Mental Health, and Sensory Organs, Faculty of Medicine and Psychology, Suicide Prevention Centre, Sant'Andrea Hospital, Sapienza University of Rome, Rome, Italy
| |
Collapse
|
2
|
Ghoshal S, Harary J, Jay JF, Al-Nassir Z, Chen AF. Evaluating Patient-Reported Outcome Measure Collection and Attainment of Substantial Clinical Benefit in Total Joint Arthroplasty Patients. J Arthroplasty 2025; 40:1452-1459. [PMID: 39586411 DOI: 10.1016/j.arth.2024.11.044] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/27/2024] [Revised: 11/16/2024] [Accepted: 11/19/2024] [Indexed: 11/27/2024] Open
Abstract
BACKGROUND Patient-reported outcome measures (PROMs) are important markers of postsurgical outcomes following total joint arthroplasty (TJA). Recent policies by the Centers for Medicare & Medicaid Services will require hospitals to achieve at least 50% postoperative PROM collection rates in order to qualify for their full annual payment in fiscal year 2028. This study aimed to: (1) quantify provider PROMs collection rates for TJA patients; (2) compare mean improvements in postoperative PROMs in TJA patients; (3) identify the proportion of TJA patients achieving substantial clinical benefit (SCB); and (4) identify factors associated with TJA patient completion of matched PROMs and achievement of SCB at one year. METHODS This retrospective cohort study included 1,493 primary total hip arthroplasty (THA) and 2,959 primary total knee arthroplasty (TKA) patients who underwent surgery at a single institution from May 2019 to December 2023. The primary outcomes were 1-year paired hip or knee PROM collection, measured by the Knee Injury and Osteoarthritis Outcome Score for Joint Replacement and Hip Disability and Osteoarthritis Outcome Score for Joint Replacement surveys, and SCB achievement rates (22 for Hip Disability and Osteoarthritis Outcome Score for Joint Replacement and 20 for Knee Injury and Osteoarthritis Outcome Score for Joint Replacement). Secondary outcomes involved identifying factors associated with PROM completion and SCB achievement. Statistical analyses included descriptive statistics, t-tests, and logistic regression analysis. RESULTS There were 61.2% of THA patients and 61.1% of TKA patients who completed 1-year paired PROMs, with 72.8% of THA and 53.3% of TKA patients achieving SCB. Factors associated with higher PROMs completion included technology use (PROMs application, text reminders). For TJA patients, a lower preoperative PROM was associated with achievement of SCB at one year. For THA patients, lower body mass index was associated with SCB attainment. For TKA patients, men were significantly associated with SCB attainment. CONCLUSIONS The study indicates compliance with the 50% PROM collection requirement, but this required significant allocation of resources, including the use of a digital care platform. Substantial clinical benefit was achieved in 72.8% of THA patients but only 53.3% of TKA patients at one year, and this was associated with certain patient demographic factors. Achieving compliance with the Centers for Medicare & Medicaid Services requirement may be difficult for many providers and institutions.
Collapse
Affiliation(s)
- Soham Ghoshal
- Harvard Medical School, Boston, Massachusetts; Brigham and Women's Hospital, Department of Orthopaedic Surgery, Boston, Massachusetts
| | | | - Jean Flanagan Jay
- Brigham and Women's Hospital, Department of Orthopaedic Surgery, Boston, Massachusetts
| | | | - Antonia F Chen
- Harvard Medical School, Boston, Massachusetts; Brigham and Women's Hospital, Department of Orthopaedic Surgery, Boston, Massachusetts
| |
Collapse
|
3
|
Zhang Q, Liang Q, Xu C. Exploring the association between chemotherapy and prognosis among patients less than 50 years old with hepatocellular carcinoma: a retrospective cohort study based on the SEER database. Discov Oncol 2025; 16:682. [PMID: 40332634 PMCID: PMC12058605 DOI: 10.1007/s12672-025-02490-7] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/10/2025] [Accepted: 04/24/2025] [Indexed: 05/08/2025] Open
Abstract
BACKGROUND/AIM Hepatic carcinoma, including hepatocellular carcinoma (HCC), is one of the most common malignant tumors globally, with an increasing incidence among younger populations. While chemotherapy is effective for advanced HCC, its impact on the prognosis of younger patients, who typically have better physiological conditions, remains unclear. Younger patients may have different tumor biology and chemotherapy responses than older patients. This study aims to evaluate the impact of chemotherapy on the prognosis and survival rates of younger HCC patients. METHODS A retrospective analysis was conducted using the Surveillance, Epidemiology, and End Results Program (SEER) database, which provides information on cancer statistics among the US population. We selected patients diagnosed with primary HCC between 2010 and 2015. The patients were divided into two groups based on whether they received chemotherapy or not. Kaplan-Meier analyses were utilised to evaluate the impact of chemotherapy on prognosis by comparing the overall survival (OS) and cancer-specific survival (CSS) between the two groups. After performing 1:1 propensity score matching (PSM), the differences in OS and CSS were reassessed. RESULTS Before PSM, there were 1662 participants with primary HCC. After PSM, the sample was reduced to 1154 participants, with 577 individuals in each chemotherapy and non-chemotherapy group. Before PSM, there was no statistically significant difference in OS and CSS between the chemotherapy and non-chemotherapy groups (P = 0.25 and P = 0.06). After PSM, although the survival time in the chemotherapy group was slightly extended, the difference remained statistically insignificant (P = 0.09 and P = 0.38). Kaplan-Meier curves indicated no significant difference between the chemotherapy and non-chemotherapy groups, both before and after PSM, further supporting the conclusion that chemotherapy did not significantly improve survival in young patients with HCC. CONCLUSION Chemotherapy did not significantly improve survival for young patients with HCC. Treatment decisions should be approached cautiously, especially in cases with complex tumor characteristics. Future studies should explore the mechanisms of chemotherapy in younger patients and develop personalized treatment strategies to improve long-term outcomes.
Collapse
Affiliation(s)
- Qiyu Zhang
- Department of Interventional Treatment, Beijing NO.6 Hospital, No. 36, North Ertiao, Jiaodaokou, Dongcheng District, Beijing, 100009, China
| | - Qiongyu Liang
- Department of Interventional Treatment, Beijing NO.6 Hospital, No. 36, North Ertiao, Jiaodaokou, Dongcheng District, Beijing, 100009, China
| | - Chi Xu
- Department of Interventional Treatment, Beijing NO.6 Hospital, No. 36, North Ertiao, Jiaodaokou, Dongcheng District, Beijing, 100009, China.
| |
Collapse
|
4
|
Lehmann J, Dragan T, Rammant E, de Ligt KM, Lai-Kwon J, Lidington E, Bultijnck R, Dejaco D, Taylor KJ, Gašpert T, Colombo E, Madariaga A, Brandão M, Nicolay JP, Zerdes I, Bosisio F, Correia D, Pellerino A, Marquina G, Fontes-Sousa M, Grisay G, Silva T, Siebenhüner A, Cammarota A, Szturz P. Exploring the integration of patient-reported outcome measures in clinical practice: A cross-sectional survey of EORTC healthcare professionals. Eur J Cancer 2025; 220:115333. [PMID: 40043551 DOI: 10.1016/j.ejca.2025.115333] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/16/2025] [Revised: 02/25/2025] [Accepted: 02/25/2025] [Indexed: 04/26/2025]
Abstract
BACKGROUND Using patient reported-outcome measures (PROMs) in routine care has significant potential to benefit patients with cancer, but it is unclear how widely they are used in practice. METHODS We conducted a cross-sectional survey (November 2023-April 2024) among healthcare professionals (HCPs) in the European Organisation for Research and Treatment of Cancer (EORTC). Descriptive statistics and chi-square tests assessed PROM use patterns, regional differences, and barriers. Binary regression models compared barriers between PROM users and non-users. RESULTS Of the 3733 EORTC members contacted, 784 responded (21 % response rate), predominantly physicians. Among the 784 HCPs (50 % women), 338 (43 %) did not use PROMs, 214 (27 %) were occasional users, and 232 (30 %) used PROMs regularly. PROM use was significantly higher in Western Europe than in Central/Eastern Europe. PROMs were primarily used for monitoring health status and enhancing communication. PROM use was highest among HCPs treating bone, soft tissue, genito-urinary, and gynecological cancers, and lowest in lung cancer. Key barriers to PROM use included lack of time (reported by 70 % of respondents) and insufficient support on how to use PROMs (73 %). Compared to non-users, PROM users more frequently identified patient-level barriers, such as accessibility concerns, as relevant (Odds Ratio 3.5, 95 % Confidence Interval 2.4-5.3). CONCLUSIONS PROM use varies by cancer type, setting, and region. Addressing time constraints, providing support, and overcoming patient barriers are key to broader integration. Ensuring equitable access to PROM tools across regions and settings is vital for promoting equity in cancer care.
Collapse
Affiliation(s)
- Jens Lehmann
- University Hospital of Psychiatry II, Medical University of Innsbruck, Innsbruck, Austria.
| | - Tatiana Dragan
- Department of Radiation Oncology (Head and Neck Unit), Institut Jules Bordet, Hopital Universitaire de Bruxelles (HUB), Université Libre de Bruxelles, Brussels, Belgium
| | - Elke Rammant
- Department of Human Structure and Repair, Ghent University, Ghent, Belgium
| | - Kelly M de Ligt
- The Netherlands Cancer Institute - Antoni van Leeuwenhoek, Amsterdam, the Netherlands
| | - Julia Lai-Kwon
- Department of Medical Oncology, Peter MacCallum Cancer Centre, Department of Health Services Research, Australia; Peter MacCallum Cancer Centre, Melbourne, Australia
| | - Emma Lidington
- Centre for Cancer Screening, Prevention and Early Diagnosis, Queen Mary University of London, United Kingdom
| | - Renée Bultijnck
- Department of Human Structure and Repair, Ghent University, Ghent, Belgium
| | - Daniel Dejaco
- Department of Otorhinolaryngology - Head and Neck Surgery, Medical University of Innsbruck, Innsbruck, Austria
| | - Katherine J Taylor
- Institute of Medical Biostatistics, Epidemiology, and Informatics, University Medical Centre Mainz, Germany
| | - Tihana Gašpert
- Faculty of Health Sciences, University of Maribor, Slovenia and University Hospital Rijeka, Rijeka, Croatia
| | - Elena Colombo
- Head and Neck Medical Oncology Unit, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy
| | | | - Mariana Brandão
- Institut Jules Bodet - Hôpital Universitaire de Bruxelles, Brussels, Belgium
| | - Jan P Nicolay
- University Medical Center Mannheim, Mannheim, Germany
| | - Ioannis Zerdes
- Theme Cancer, Karolinska University Hospital and Comprehensive Cancer Center & Department of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden
| | - Francesca Bosisio
- Translational Cell and Tissue Research, KU Leuven, and Department of Pathology, UZ Leuven, Leuven, Belgium
| | - Dora Correia
- Department of Radiation Oncology, Cantonal Hospital Aarau, Aarau, Aargau, Switzerland; Department of Radiation Oncology, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland
| | - Alessia Pellerino
- Division of Neuro-Oncology, Department of Neuroscience "Rita Levi Montalcini", University and City of Health and Science Hospital, Turin, Italy
| | - Gloria Marquina
- Department of Medical Oncology, Hospital Clinico San Carlos, School of Medicine, UCM, IdissC, Madrid, Spain
| | - Mário Fontes-Sousa
- Medical Oncology Department, Hospital CUF Tejo, Lisbon, Portugal; Medical Oncology Department ULSLO, Hospital S. Francisco Xavier, Lisbon, Portugal
| | | | - Tiago Silva
- Instituto Portugues Oncologia Francisco Gentil, Lisbon, Portugal
| | - Alexander Siebenhüner
- Department of Hematology/Oncology, University Hospital Zurich (USZ), Zurich, Switzerland
| | - Antonella Cammarota
- Department of Biomedical Sciences, Humanitas University, Milan, Italy; Drug Development Unit, Sarah Cannon Research Institute UK, London, United Kingdom
| | - Petr Szturz
- Department of Oncology, University of Lausanne and Lausanne University Hospital, Lausanne, Switzerland
| |
Collapse
|
5
|
Jo A, Iwamoto T, Suzuki Y, Ogata R, Koike Y, Nomura T, Tanaka K, Miyoshi Y, Hara K, Yoshitomi S, Hikino H, Takahashi H, Takabatake D, Kubo S, Ikeda M, Shien T, Doihara H, Kikawa Y, Taira N. Validation of the Symptom Illustration Scale within an electronic Patient-Reported Outcomes Monitoring environment for metastatic breast cancer patients undergoing chemotherapy. Breast Cancer 2025:10.1007/s12282-025-01702-w. [PMID: 40208505 DOI: 10.1007/s12282-025-01702-w] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/17/2024] [Accepted: 04/01/2025] [Indexed: 04/11/2025]
Abstract
BACKGROUND To enhance patient outcomes, we previously developed "Hibilog", an app that allows patients to report symptoms electronically. The paper-based Symptom Illustration Scale (SIS) was adapted using stickers and emojis to evaluate patient-reported outcomes (PROs). This study aimed to validate SIS within an electronic PRO monitoring environment for metastatic breast cancer patients undergoing chemotherapy. METHODS The patients used the Electronic Patient-Reported Outcomes Monitoring (ePROM) "Hibilog" application to answer a questionnaire consisting of 18 items selected from the Patient-Reported Outcome-Common Terminology Criteria for Adverse Events (PRO-CTCAE), focusing on symptoms related to breast cancer treatment, along with the corresponding SIS questionnaire. Symptom monitoring began upon registration and continued every two weeks until the completion of the study. The primary outcome was the criterion-related validity of the SIS against PRO-CTCA using the ePROM. The secondary endpoints included the response rate, response time, and missing rates for each item. RESULTS Patients (n = 75) were registered between September 2019 and March 2020. For criterion validity, the Spearman rank correlation coefficients between the PRO-CTCAE and SIS items showed high correlations (rs ≥ 0.41) for all 18 items. The κ correlation coefficient indicated a high correlation (κ > 0.41) in 11 of the 18 items (61.1%), unlike the correlation with continuous variables. In terms of response and missing rates, the SIS in ePROM demonstrated similarly high performance as our results. Additionally, the average response time was 3.0 min (SD 4.2) for SIS, with a substantially shorter response time. CONCLUSION We conclude that SIS is a useful tool in an ePROM environment for patients with MBC undergoing chemotherapy. The clinical utility of SIS in an ePRO environment needs to be validated to develop a more accurate scale for capturing patient symptoms.
Collapse
Affiliation(s)
- Azusa Jo
- Department of Breast and Thyroid Surgery, Kawasaki Medical School, Kurashiki, Japan
| | - Takayuki Iwamoto
- Department of Breast and Thyroid Surgery, Kawasaki Medical School, Kurashiki, Japan.
| | - Youko Suzuki
- Department of Breast and Endocrine Surgery, Okayama University Hospital, Okayama, Japan
| | - Ryohei Ogata
- Department of Breast and Thyroid Surgery, Kawasaki Medical School, Kurashiki, Japan
| | - Yoshikazu Koike
- Department of Breast and Thyroid Surgery, Kawasaki Medical School, Kurashiki, Japan
| | - Tsunehisa Nomura
- Department of Breast and Thyroid Surgery, Kawasaki Medical School, Kurashiki, Japan
| | - Katsuhiro Tanaka
- Department of Breast and Thyroid Surgery, Kawasaki Medical School, Kurashiki, Japan
| | - Yuichiro Miyoshi
- Department of Breast Surgery, National Hospital Organization Shikoku Cancer Center, Matsuyama, Japan
| | - Kyoko Hara
- Department of Breast and Endocrine Surgery, Japanese Red Cross Okayama Hospital, Okayama, Japan
| | - Seiji Yoshitomi
- Department of Breast and Endocrine Surgery, Japanese Red Cross Okayama Hospital, Okayama, Japan
| | - Hajime Hikino
- Department of Breast Surgery, Matsue Red Cross Hospital, Matsue, Japan
| | - Hirotoshi Takahashi
- Department of Breast and Endocrine Surgery, National Hospital Organization Fukuyama Medical Centre, Fukuyama, Japan
| | - Daisuke Takabatake
- Department of Breast and Endocrine Surgery, Okayama University Hospital, Okayama, Japan
| | - Shinichiro Kubo
- Department of Breast and Thyroid Surgery, Fukuyama City Hospital, Fukuyama, Japan
| | - Masahiko Ikeda
- Department of Breast and Thyroid Surgery, Fukuyama City Hospital, Fukuyama, Japan
| | - Tadahiko Shien
- Department of Breast and Endocrine Surgery, Okayama University Hospital, Okayama, Japan
| | - Hiroyoshi Doihara
- Department of Surgery, Kawasaki Medical School General Medical Center, Okayama, Japan
| | - Yuichiro Kikawa
- Department of Breast Surgery, Kansai Medical University Hospital, Osaka, Japan
| | - Naruto Taira
- Department of Breast and Thyroid Surgery, Kawasaki Medical School, Kurashiki, Japan
| |
Collapse
|
6
|
Hashiba M, Rasmussen TB, Lamberts MK, Nielsen SK, Risom SS. Validation of the Danish translation of the atrial fibrillation severity scale: a study on linguistic and cultural adaptation. Health Qual Life Outcomes 2025; 23:36. [PMID: 40188057 PMCID: PMC11972482 DOI: 10.1186/s12955-025-02362-2] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/17/2025] [Accepted: 03/21/2025] [Indexed: 04/07/2025] Open
Abstract
BACKGROUND Atrial fibrillation (AF) stands as the most common cardiac arrhythmia on a global scale with a substantial symptom burden impacting the quality of life (QoL) of patients with AF. Consequently, assessing and monitoring symptoms in patients with AF has gained increased interest, leading to a rise in patient-reported outcome measures (PROMs). PROMs provide valuable insights into the patient's perspective, allowing for a more patient-centric approach to care. One of these PROMs is the Atrial Fibrillation Severity Scale (AFSS), a convenient and straightforward instrument for assessing symptom severity in patients with AF, potentially enabling healthcare professionals to tailor interventions accordingly. However, no Danish version of AFSS exists. This study aims to translate and linguistically validate the AFSS in accordance with MAPI Research Trust Guidelines. METHODS The translation of AFSS from English to Danish was conducted using forward and backward translation, yielding versions 1 and 2, respectively. Afterwards, the translated AFSS was linguistically validated in patients with AF by cognitive interviews producing a third version. The third version was then proofread, finalizing the Danish version of AFSS. RESULTS Derived from the cognitive interviews, the Danish version of AFSS demonstrated comprehensibility and readability among all included patients with AF. No revisions were deemed necessary based on the patient testing, culminating in the submission of the final version of AFSS for approval. CONCLUSION A certified and linguistically validated Danish version of the AFSS has been established and is accessible through MAPI Trust Research.
Collapse
Affiliation(s)
- Mads Hashiba
- Department of Cardiology, Herlev and Gentofte University Hospital, Copenhagen, Denmark.
| | | | | | | | - Signe Stelling Risom
- Department of Cardiology, Herlev and Gentofte University Hospital, Copenhagen, Denmark
| |
Collapse
|
7
|
Polubriaginof FCG, Lipitz-Snyderman A, Chimonas S, Stetson PD, Kuperman GJ. Patient-Reported Outcomes Program at Scale at a Cancer Center. JCO Clin Cancer Inform 2025; 9:e2400253. [PMID: 40262062 PMCID: PMC12017341 DOI: 10.1200/cci-24-00253] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/11/2024] [Revised: 01/24/2025] [Accepted: 03/03/2025] [Indexed: 04/24/2025] Open
Abstract
PURPOSE Incorporating patient-reported outcomes (PROs) into health care processes can improve engagement with patients; however, adopting PROs at scale is challenging. The aim of this study was to describe the design, development, and adoption at scale of a comprehensive PRO program for standard of care and research at a cancer center. METHODS Requirements for a PRO program were obtained from multiple stakeholders. Components of the program included a governance process to assure a consistent and satisfactory experience for patients completing PRO questionnaires, tools to create and manage questionnaires and related content, methods to send questionnaires to relevant patients at the appropriate time, interactive tools for patients to complete the questionnaires as part of their portal experience, and integration of PRO data into workflows for clinicians. We used descriptive statistics to assess the use of the program from 2016 to 2023. RESULTS From program launch (on February 1, 2016) until December 31, 2023, 189 unique questionnaires were developed (101 for standard-of-care, 70 for research, and 18 for quality improvement). Of the 432,497 unique patients who were assigned at least one questionnaire, 314,685 (73%) completed at least one. Of 5,948,464 questionnaires sent, 3,098,574 (52%) were completed. The median completion time was 2 minutes. CONCLUSION Large-scale adoption of PROs at a cancer center is feasible. Key considerations for success include governance processes, attention to patient experience and clinician workflow, and the ability to manage complex inclusion criteria and timing of delivery of questionnaires. These principles should be disseminated so the full potential of PROs in health care can be realized.
Collapse
Affiliation(s)
| | - Allison Lipitz-Snyderman
- Digital Informatics and Technology Solutions, Memorial Sloan Kettering Cancer Center, New York, NY
| | - Susan Chimonas
- Digital Informatics and Technology Solutions, Memorial Sloan Kettering Cancer Center, New York, NY
| | - Peter D. Stetson
- Digital Informatics and Technology Solutions, Memorial Sloan Kettering Cancer Center, New York, NY
| | - Gilad J. Kuperman
- Digital Informatics and Technology Solutions, Memorial Sloan Kettering Cancer Center, New York, NY
| |
Collapse
|
8
|
Fair O, Ali AB, Haener M, Plotnikoff K, Schaaf N, Schmitt-Boshnick M, Soprovich A. Use of patient-reported outcome measures (PROMs) in primary care-based mental health programming: an environmental scan of Alberta, Canada. BMC PRIMARY CARE 2025; 26:71. [PMID: 40089665 PMCID: PMC11909860 DOI: 10.1186/s12875-025-02766-5] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Received: 09/12/2024] [Accepted: 02/21/2025] [Indexed: 03/17/2025]
Abstract
Background Many Primary Care Networks (PCNs) in Alberta collect Patient Reported Outcome Measures (PROMs) to support patient-centered care. However, there is limited knowledge on what tools are currently being administered across PCNs and how the data is used. For this study, we focused on PROMs for mental health programming (MHP). Our objectives are to identify what PROMs are currently being administered in PCNs and what domains they measure for MHP; understand PCNs’ capacity to implement and use PROMs data effectively for their PCN MHP; describe how PROMs are currently being reported in PCNs for MHP; and understand the feasibility of having standardized and consistent measurement of PROMs in general across PCNs. Methods This environmental scan employs a survey for PCN evaluators (those responsible for managing PROMs data for their PCN), tailored to examine PROMs in PCN MHP across all populations. Evaluators from all 39 Alberta PCNs were invited to complete the survey on behalf of their PCN. It included closed and open-ended questions. Survey results were aggregated and reported by objective. Results Evaluators from 20 PCNs (51%) completed the survey, with a mix of rural/urban and across all five health zones. Nine out of 20 reported 11 tools currently being collected and seven out of nine reported using more than one tool for MHP. The most used tools were the EQ-5D-5 L (7/9) and PHQ-9 (6/9). Seven respondents indicated the EQ-5D-5Lwas useful or sometimes useful; five reported the PHQ-9 was useful or sometimes useful. While the use of each PROM varied, most PROMs are used for clinical care decisions and internal reporting. Most respondents indicated standardizing PROMs across PCNs would be challenging, however having alignment of PROMs and sharing best practices for PCNs would be beneficial. Conclusions These results provide a better understanding of the current use of PROMs in PCNs, specific to MHP, which will be further examined through future narrative conversations. Overall, this study informs primary care leadership on the current use of PROMs and supports the advancement of PROMs use in Alberta.
Collapse
Affiliation(s)
- Oacia Fair
- Alberta PROMs and EQ-5D Research and Support Unit (APERSU), School of Public Health, University of Alberta, 2-040 Li Ka Shing Centre for Health Research Innovation, Edmonton, AB, T6G 2E1, Canada
| | - Al-Bakir Ali
- Edmonton O-day'min Primary Care Network, 130, 11910 111 Ave, Edmonton, AB, T5G 0E5, Canada
| | - Michel Haener
- Grande Prairie Primary Care Network, 104 - 11745 105 Street, Grande Prairie, AB, T8V 8L1, Canada
| | - Kara Plotnikoff
- Calgary Foothills Primary Care Network, 600, 60 Uxborough Place NW, Calgary, AB, T2N 2V2, Canada
| | - Nolan Schaaf
- Chinook Primary Care Network, 817 4 Ave S, Suite 200, Lethbridge, AB, T1J 0P3, Canada
| | | | - Allison Soprovich
- Alberta PROMs and EQ-5D Research and Support Unit (APERSU), School of Public Health, University of Alberta, 2-040 Li Ka Shing Centre for Health Research Innovation, Edmonton, AB, T6G 2E1, Canada.
| |
Collapse
|
9
|
Major A, Dueck AC, Thanarajasingam G. SOHO State of the Art Updates and Next Questions | Measuring Patient-Reported Outcomes (PROs) and Treatment Tolerability in Patients With Hematologic Malignancies. CLINICAL LYMPHOMA, MYELOMA & LEUKEMIA 2025; 25:142-155. [PMID: 39198102 DOI: 10.1016/j.clml.2024.07.018] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 05/01/2024] [Accepted: 07/28/2024] [Indexed: 09/01/2024]
Abstract
There has been a rapid expansion of novel therapeutics for hematologic malignancies, including monoclonal antibodies, small molecules, and cellular therapies, which confer different treatment-related toxicities and symptomatic adverse events (AEs) than traditional cytotoxic chemotherapies. Given that patients with blood cancers are living longer with these newer treatments, with some therapies requiring indefinite or time-intensive administration, consideration of patient-reported tolerability and effects on health-related quality of life (HRQoL) are increasingly relevant. Historically, clinical trials have focused on the efficacy and safety of therapies. While related to safety and not intended to replace it, "treatment tolerability" is a distinct construct defined as the extent to which symptomatic and nonsymptomatic AEs impact a patient's ability and desire to continue with current treatment dosing, which also encompasses how patients feel and function while undergoing anticancer therapies. Assessment of tolerability requires the systematic and rigorous measurement of patient-reported outcomes (PROs). In this review, we discuss the introduction of patient-reported outcomes measures (PROMs) into hematology clinical trials and how PROs inform the measurement of treatment tolerability, including symptomatic adverse events, physical and role functioning, and overall side effect burden. Selected PROMs for measurement of these core tolerability domains are outlined, with a focus on novel analytic tools that have been developed for the longitudinal analysis of tolerability data. Further, we outline ongoing studies to accelerate integration of PROs throughout the cancer care spectrum, from early-stage drug development to routine clinical care, with the goal of improving both HRQoL and survival.
Collapse
Affiliation(s)
- Ajay Major
- Division of Hematology, Department of Medicine, University of Colorado School of Medicine, Aurora, Co.
| | - Amylou C Dueck
- Division of Clinical Trials and Biostatistics, Department of Quantitative Health Sciences, Mayo Clinic, Scottsdale, Az
| | | |
Collapse
|
10
|
Fenwick EK, Man REK, Tan ACS, Najjar RP, Milea D, Lee EPX, Wong TY, Tan GSW, Chan HW, Laude A, Teo KYC, Lee SY, Yeo IYS, Mathur R, Cheung GCM, Lamoureux EL. Psychometric evaluation and computerized adaptive testing simulations of age-related macular degeneration quality of life item banks. Asia Pac J Ophthalmol (Phila) 2025; 14:100178. [PMID: 40049333 DOI: 10.1016/j.apjo.2025.100178] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/18/2024] [Revised: 02/18/2025] [Accepted: 02/23/2025] [Indexed: 03/15/2025] Open
Abstract
PURPOSE To optimize the psychometric properties of age-related macular degeneration (AMD) quality of life (QoL) item banks (IBs), and evaluate their performance using computerized adaptive testing (CAT) simulations. DESIGN Cross-sectional, clinical study. METHODS 261 AMD patients answered 219 items within seven IBs: Activity Limitation (AL); Lighting (LT); Mobility (MB); Emotional (EM); Concerns (CN); AMD Management (AM); and Work (WK), referred to collectively as "MacCAT". The psychometric properties of each IB (e.g. measurement precision; item "fit"; differential item functioning (DIF)) were assessed using Rasch analysis. The mean number of items required for "high" and "moderate" measurement precision was determined using CAT simulations. RESULTS Of the 261 participants (mean age 70.5 ± 7.6 years), 69 (26.4 %), 35 (13.4 %), 80 (30.7 %) and 77 (29.5 %) had no, early, intermediate and late AMD (better eye), respectively. AL, EM, CN and AM displayed good psychometric properties overall after collapsing response categories and deleting items for misfit and/or DIF. Despite similar reengineering efforts, LT and MB had suboptimal measurement precision but were retained due to otherwise good psychometric performances. Owing to unresolvable psychometric issues, WK was not considered further. Targeting for all IBs was suboptimal. In CAT simulations on the six remaining IBs, the mean number of items required per IB ranged from 8 (AL) to 13 (MB) for moderate, and 13 (AL) to19 (MB) for high measurement precision. CONCLUSIONS Six IBs demonstrated acceptable psychometric properties and potential CAT efficiency, suggesting MacCAT provides a comprehensive measurement of the QoL impact of AMD and associated treatments. Further testing in larger clinical cohorts is needed.
Collapse
Affiliation(s)
- Eva K Fenwick
- Singapore Eye Research Institute, Singapore National Eye Center, Singapore; Duke-National University of Singapore (NUS) Medical School, National University of Singapore, Singapore
| | - Ryan E K Man
- Singapore Eye Research Institute, Singapore National Eye Center, Singapore; Duke-National University of Singapore (NUS) Medical School, National University of Singapore, Singapore
| | - Anna C S Tan
- Singapore Eye Research Institute, Singapore National Eye Center, Singapore; Duke-National University of Singapore (NUS) Medical School, National University of Singapore, Singapore
| | - Raymond P Najjar
- Singapore Eye Research Institute, Singapore National Eye Center, Singapore; Duke-National University of Singapore (NUS) Medical School, National University of Singapore, Singapore; Department of Ophthalmology, Yong Loo Lin School of Medicine, National University of Singapore, Singapore; Department of Biomedical Engineering, College of Design and Engineering, National University of Singapore, Singapore
| | - Dan Milea
- Singapore Eye Research Institute, Singapore National Eye Center, Singapore
| | - Ester P X Lee
- Singapore Eye Research Institute, Singapore National Eye Center, Singapore
| | - Tien Yin Wong
- Singapore Eye Research Institute, Singapore National Eye Center, Singapore; Duke-National University of Singapore (NUS) Medical School, National University of Singapore, Singapore; Tsinghua Medicine, Tsinghua University, Beijing, China
| | - Gavin S W Tan
- Singapore Eye Research Institute, Singapore National Eye Center, Singapore; Duke-National University of Singapore (NUS) Medical School, National University of Singapore, Singapore
| | - Hwei Wuen Chan
- Department of Ophthalmology, Yong Loo Lin School of Medicine, National University of Singapore, Singapore
| | - Augustinus Laude
- National Healthcare Group Eye Institute, Tan Tock Seng Hospital, Singapore
| | - Kelvin Y C Teo
- Singapore Eye Research Institute, Singapore National Eye Center, Singapore; Duke-National University of Singapore (NUS) Medical School, National University of Singapore, Singapore
| | - Shu Yen Lee
- Singapore Eye Research Institute, Singapore National Eye Center, Singapore; Duke-National University of Singapore (NUS) Medical School, National University of Singapore, Singapore
| | - Ian Yew San Yeo
- Singapore Eye Research Institute, Singapore National Eye Center, Singapore; Duke-National University of Singapore (NUS) Medical School, National University of Singapore, Singapore
| | - Ranjana Mathur
- Singapore Eye Research Institute, Singapore National Eye Center, Singapore; Duke-National University of Singapore (NUS) Medical School, National University of Singapore, Singapore
| | - Gemmy C M Cheung
- Singapore Eye Research Institute, Singapore National Eye Center, Singapore
| | - Ecosse L Lamoureux
- Singapore Eye Research Institute, Singapore National Eye Center, Singapore; Duke-National University of Singapore (NUS) Medical School, National University of Singapore, Singapore; The University of Melbourne, Melbourne, Australia.
| |
Collapse
|
11
|
Holeman TA, Hales J, Cizik AM, Zickmund S, Kean J, Brooke BS. Factors that impact the implementation of patient reported outcomes in routine clinical care for peripheral artery disease from the patient perspective. Qual Life Res 2025; 34:711-723. [PMID: 39579272 DOI: 10.1007/s11136-024-03842-6] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 11/08/2024] [Indexed: 11/25/2024]
Abstract
PURPOSE Patient reported outcome measures (PROMs) are well-suited for the longitudinal assessment of quality of life, including depression and physical limitations associated with peripheral artery disease (PAD) that are not routinely assessed in clinical care. This study was designed to gain the patient perspective to facilitate implementation of PROMs into clinical practice for PAD management. METHODS Twenty-three patients with PAD at a single vascular surgery clinic were enrolled for a qualitative interview, July-December 2022. Patients completed PROMIS Physical Function and Depression assessments before undergoing semi-structured interviews. Two researchers used an inductive thematic analysis to analyze emergent themes from transcribed interviews. RESULTS The average age of participants was 69.5 ± 8.2 years; 91% were Caucasian, and 39% were female. Qualitative interviews revealed three implementation-related themes: (1) patient preferences on the timing and type of PROMs collected, (2) PROMs applications in outpatient PAD care, including discussions with their physician, and (3) the clinical value of PROMs. Overall, patients with PAD prefer PROMs related to quality of life and physical function over other domains. Patients appreciate the convenience to complete PROMs before their appointment. Patients would like to verbally discuss meaningful score changes with their providers without the use of graphical aids. Most patients believe PROMs are valuable in their clinical care if their physician reviews the results and the PROM questions apply to their disease symptoms. CONCLUSIONS Patient preferences inform future successful implementations and will improve patient completion rates for the collection and clinical use of PROMs in PAD clinical care.
Collapse
Affiliation(s)
- Teryn A Holeman
- Division of Vascular Surgery, Department of Population Health Science, University of Utah School of Medicine, 30 N Mario Capecchi Dr., Salt Lake City, UT, 84112, USA.
- Department of Population Health Science, School of Medicine, University of Utah, Salt Lake City, UT, USA.
| | - Julie Hales
- Division of Vascular Surgery, Department of Population Health Science, University of Utah School of Medicine, 30 N Mario Capecchi Dr., Salt Lake City, UT, 84112, USA
| | - Amy M Cizik
- Department of Population Health Science, School of Medicine, University of Utah, Salt Lake City, UT, USA
- Department of Orthopaedic Surgery, School of Medicine, University of Utah, Salt Lake City, UT, USA
| | - Susan Zickmund
- Department of Population Health Science, School of Medicine, University of Utah, Salt Lake City, UT, USA
- Department of Internal Medicine, School of Medicine, University of Utah, Salt Lake City, UT, USA
| | - Jacob Kean
- Department of Population Health Science, School of Medicine, University of Utah, Salt Lake City, UT, USA
- Department of Internal Medicine, School of Medicine, University of Utah, Salt Lake City, UT, USA
| | - Benjamin S Brooke
- Division of Vascular Surgery, Department of Population Health Science, University of Utah School of Medicine, 30 N Mario Capecchi Dr., Salt Lake City, UT, 84112, USA.
- Department of Population Health Science, School of Medicine, University of Utah, Salt Lake City, UT, USA.
| |
Collapse
|
12
|
Blackman-Mack R, Chater G, Aggarwal G. Patient-centred outcome measures for oncological surgery: a narrative review. Anaesthesia 2025; 80 Suppl 2:125-131. [PMID: 39776433 DOI: 10.1111/anae.16500] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 10/18/2024] [Indexed: 01/11/2025]
Abstract
INTRODUCTION Peri-operative medicine is becoming increasingly relevant in the context of managing frail patients with cancer. This paper outlines how demographic shifts in populations are affecting cancer incidence and frailty rates, the relevance this holds to the management of cancer care, and the outcome measures that should be used to gauge best clinical practice to ensure patient-centred care. METHODS A targeted literature review was conducted using the search terms 'surgical oncology', 'outcomes', 'frailty', 'quality of life' and 'end of life' from 10 to 17 June 2024. Articles were reviewed by all authors and core themes from the literature review were identified. Core themes were then discussed by the authors to construct a narrative review. RESULTS The review identified several core themes in relation to patient-centred outcome measures for oncological surgery. The UK population is ageing and consequently, the number of older people being diagnosed with cancer is increasing. There is much evidence to show that older patients have poorer outcomes in terms of mortality and postoperative complications across all types and severities of cancer. Traditional outcome measures such as 30-day mortality, duration of stay and recurrence rates fail to capture the outcomes that are most pertinent to this patient cohort. These include patient quality of life and treatment burden. We discuss the measurement of quality of life through the use of patient-reported outcome measures and their limitations. We also highlight the need for patient-centred, holistic care with the use of tools such as comprehensive geriatric assessment, which have been shown to improve patient outcomes. DISCUSSION There is need for a greater emphasis on quality-of-life measures alongside mortality and patient-reported outcome measures. We argue that holistic care approaches should play a greater role in enabling the measurement of outcome states beyond simply dead or alive.
Collapse
Affiliation(s)
| | - George Chater
- Anaesthetic Department, King's College Hospital, London, UK
| | - Geeta Aggarwal
- Anaesthetic Department, Royal Surrey Hospital Foundation Trust, Guildford, UK
| |
Collapse
|
13
|
Xia Y, Guan X, Shi Z, Luo Y, He P. Remote symptom monitoring with patient-reported outcomes and nudges during lung cancer immunotherapy in China (PRO-NET): protocol for a randomised controlled trial. BMJ Open 2025; 15:e093374. [PMID: 39880457 PMCID: PMC11781134 DOI: 10.1136/bmjopen-2024-093374] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/05/2024] [Accepted: 01/10/2025] [Indexed: 01/31/2025] Open
Abstract
INTRODUCTION Lung cancer is the leading cause of cancer-related mortality globally, with non-small cell lung cancer (NSCLC) comprising the majority of cases. For advanced NSCLC, immunotherapy offers substantial survival benefits but is often accompanied by severe immune-related adverse events symptoms, significantly affecting health-related quality of life (HRQoL). Routinely collection of patient-reported outcomes (PROs) followed by automated alerts has been shown to improve overall survival and HRQoL for cancers. However, there is limited evidence for PRO-based symptom monitoring on advanced NSCLC during immunotherapy. This study proposes an electronic PRO-based symptom tracking intervention, integrated with reactive alerts and nudges (PRO-NET) to improve HRQoL for advanced NSCLC patients receiving immunotherapy in China. Secondary objectives include assessing the effect of PRO-symptom monitoring on survival, physical function, symptom control, mental health, cost-effectiveness and implementation fidelity. METHODS AND ANALYSIS The PRO-NET study is a two-arm, parallel randomised controlled trial. The study will enrol at least 300 advanced NSCLC patients undergoing immunotherapy in China. Participants will be randomly assigned to either the intervention or control group in a ratio of 1:1 via PRO-NET programme. The intervention involves weekly electronic collection of immune-related PROs and reactive alerts sent directly to patients, combined with nudges over a 6-month period. Patients in the control group will follow usual care and will not trigger the alerts. Both the intervention and control groups will receive outcome assessments at baseline, 3 months and 6 months. Primary outcome focuses on HRQoL, while secondary outcomes include survival, physical function, symptom burden, mental health, cost-effectiveness and implementation fidelity. Differences in HRQoL between the groups will be compared using general linear mixed model, accounting for potential confounding. ETHICS AND DISSEMINATION The study was approved by the Institutional Review Board of the Peking University protocol on 21 July 2024 (No. IRB 00001052-24066). This protocol is based on V2.0, 6 July 2024 of the protocol. The results of this study will be disseminated through peer-reviewed publications and academic conferences. TRIALS REGISTRATION NUMBER ChiCTR2400088408.
Collapse
Affiliation(s)
- Yiqi Xia
- School of Public Health, Peking University, Beijing, China
- China Center for Health Development Studies, Peking University, Beijing, China
| | - Xiaolong Guan
- School of Public Health, Peking University, Beijing, China
- China Center for Health Development Studies, Peking University, Beijing, China
| | - Zhenyu Shi
- China Center for Health Development Studies, Peking University, Beijing, China
| | - Yanan Luo
- Department of Global Health, Peking University, Beijing, China
| | - Ping He
- China Center for Health Development Studies, Peking University, Beijing, China
| |
Collapse
|
14
|
Bilger S, Koechlin L, Gahl B, Miazza J, Vöhringer L, Berdajs D, Rüter F, Reuthebuch O. Introduction of Patient-reported Outcome Measures in a Cardiac Surgery Center. Thorac Cardiovasc Surg 2025. [PMID: 39870086 DOI: 10.1055/a-2509-0430] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/29/2025]
Abstract
BACKGROUND Although patient-reported outcome measures (PROMs) as an integral part of value-based healthcare have important potential for clinical issues, e.g., for shared decision-making, data are limited. Thus, the aim of this study was to report initial results when introducing PROMs in the setting of cardiac surgery. METHODS Patients undergoing elective coronary artery bypass grafting (CABG) were included. Three questionnaires (Seattle Angina Questionnaire 7 [SAQ-7], Rose Dyspnea Scale [RDS], and Patient Health Questionnaire 2 [PHQ-2]) were either administered via iPad (in-hospital) or via a web-based tool (at home). Baseline PROMs were completed at admission. Follow-ups were conducted at 30 days, 1 year, and 2 years postoperatively. We investigated the probability of improvement using multilevel, mixed-effects, ordered logistic regression. RESULTS Overall, 99 patients answered the questionnaires preoperatively, 84 of whom answered at least one questionnaire postoperatively. No patient died within the hospitalization. Median (IQR) length of stay in the intensive care unit (ICU) was 1.0 (1.0 to 2.0) days. In all dimensions of any PROMs questionnaire, OR was above 1, indicating that most patients reported improvement 1 to 2 years after surgery by at least 1 grade. In the exploratory analysis we found age ≥75 years positively associated with a significantly greater improvement of the SAQ-7 angina frequency and SAQ-7 quality of life score. Length of stay in the ICU showed no significant association with any PROMs at midterm follow-up. CONCLUSION In patients undergoing CABG, after a decline within 30 days postoperatively, quality of life-related outcomes improved markedly in a midterm follow-up compared with the preoperative state.
Collapse
Affiliation(s)
- Selina Bilger
- Department of Quality Management and Value-based Healthcare, University Hospital Basel, Basel, Switzerland
| | - Luca Koechlin
- Department of Cardiac Surgery, University Hospital Basel, Basel, Switzerland
| | - Brigitta Gahl
- Department of Cardiac Surgery, University Hospital Basel, Basel, Switzerland
- Surgical Outcome Research Center Basel, University Hospital Basel, University Basel, Basel, Switzerland
| | - Jules Miazza
- Department of Cardiac Surgery, University Hospital Basel, Basel, Switzerland
| | - Luise Vöhringer
- Department of Cardiac Surgery, University Hospital Basel, Basel, Switzerland
| | - Denis Berdajs
- Department of Cardiac Surgery, University Hospital Basel, Basel, Switzerland
| | - Florian Rüter
- Department of Quality Management and Value-based Healthcare, University Hospital Basel, Basel, Switzerland
| | - Oliver Reuthebuch
- Department of Cardiac Surgery, University Hospital Basel, Basel, Switzerland
| |
Collapse
|
15
|
Ataman R, Alhasani R, Auneau-Enjalbert L, Quigley A, Michael HU, Ahmed S. Measurement properties of the Traumatic Brain Injury Quality of Life (TBI-QoL) and Spinal Cord Injury Quality of Life (SCI-QoL) measurement systems: a systematic review. Syst Rev 2025; 14:18. [PMID: 39838501 PMCID: PMC11749626 DOI: 10.1186/s13643-024-02722-x] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/13/2024] [Accepted: 11/25/2024] [Indexed: 01/23/2025] Open
Abstract
PURPOSE Traumatic brain injury and spinal cord injury impact all areas of individuals' quality of life. A synthesis of available evidence for the Traumatic Brain Injury Quality of Life (TBI-QoL) and Spinal Cord Injury Quality of Life (SCI-QoL) measurement systems could inform evidence-based clinical practice and research. Thus, we aimed to systematically review the literature of existing evidence on the measurement properties of SCI-QoL and TBI-QoL among rehabilitation populations. METHODS We used the COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) framework for evaluating measures to guide this systematic review. We searched nine electronic databases and registries, and hand-searched reference lists of included articles. Two independent reviewers screened selected articles and extracted the data. We used COSMIN's thresholds to synthesize measurement properties evidence (insufficient, sufficient), and the modified GRADE approach to synthesize evidence quality (very-low, low, moderate, high). RESULTS We included 16 studies for SCI-QoL and 14 studies for TBI-QoL. Both measurement systems have sufficient content validity, structural validity, internal consistency and construct validity across nearly all domains (GRADE: high). Most SCI-QoL domains and some TBI-QoL domains have sufficient evidence of cross-cultural validity and test-retest reliability (GRADE: moderate-high). Besides the cognition domains of TBI-QoL, which have indeterminate evidence for measurement error and sufficient evidence for responsiveness (GRADE: high), there is no additional evidence available for these measurement properties. CONCLUSION Rehabilitation researchers and clinicians can use SCI-QoL and TBI-QoL to describe and evaluate patients. Further evidence of measurement error, responsiveness, and predictive validity would advance the use and interpretation of SCI-QoL and TBI-QoL in rehabilitation.
Collapse
Affiliation(s)
- Rebecca Ataman
- School of Physical and Occupational Therapy, McGill University, Montréal, Québec, Canada
- Centre for Interdisciplinary Research in Rehabilitation of Greater Montréal, Montréal, Québec, Canada
- Quality Division, Clinical Institutes and Quality Programs, Ontario Health, Toronto, Canada
| | - Rehab Alhasani
- Department of Rehabilitation, Princess Nora Bint Abdul Rahman University, Riyadh, Saudi Arabia
| | - Line Auneau-Enjalbert
- School of Physical and Occupational Therapy, McGill University, Montréal, Québec, Canada
- Centre for Interdisciplinary Research in Rehabilitation of Greater Montréal, Montréal, Québec, Canada
| | - Adria Quigley
- School of Physiotherapy, Dalhousie University, Forrest Building, 5869 University Avenue, PO Box 15000, Halifax, NS, B3H 4R2, Canada
- Nova Scotia Health Authority, Nova Scotia Rehabilitation and Arthritis Centre, 1341 Summer St, Halifax, NS, B3H 4K4, Canada
| | - Henry Ukachukwu Michael
- Division of Experimental Medicine, McGill University, Montreal, QC, Canada
- Center for Outcomes Research and Evaluation (CORE), Research Institute of the McGill University Health Center, Montreal, QC, Canada
| | - Sara Ahmed
- School of Physical and Occupational Therapy, McGill University, Montréal, Québec, Canada.
- Centre for Interdisciplinary Research in Rehabilitation of Greater Montréal, Montréal, Québec, Canada.
- Center for Outcomes Research and Evaluation (CORE), Research Institute of the McGill University Health Center, Montreal, QC, Canada.
| |
Collapse
|
16
|
Zhang L, Bullen C, Chen J. Digital Health Innovations to Catalyze the Transition to Value-Based Health Care. JMIR Med Inform 2025; 13:e57385. [PMID: 39864959 PMCID: PMC11769777 DOI: 10.2196/57385] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/15/2024] [Revised: 09/23/2024] [Accepted: 11/15/2024] [Indexed: 01/28/2025] Open
Abstract
Unlabelled The health care industry is currently going through a transformation due to the integration of technologies and the shift toward value-based health care (VBHC). This article explores how digital health solutions play a role in advancing VBHC, highlighting both the challenges and opportunities associated with adopting these technologies. Digital health, which includes mobile health, wearable devices, telehealth, and personalized medicine, shows promise in improving diagnostic accuracy, treatment options, and overall health outcomes. The article delves into the concept of transformation in health care by emphasizing its potential to reform care delivery through data communication, patient engagement, and operational efficiency. Moreover, it examines the principles of VBHC, with a focus on patient outcomes, and emphasizes how digital platforms play a role in treatment among tertiary hospitals by using patient-reported outcome measures. The article discusses challenges that come with implementing VBHC, such as stakeholder engagement and standardization of patient-reported outcome measures. It also highlights the role played by health innovators in facilitating the transition toward VBHC models. Through real-life case examples, this article illustrates how digital platforms have had an impact on efficiencies, patient outcomes, and empowerment. In conclusion, it envisions directions for solutions in VBHC by emphasizing the need for interoperability, standardization, and collaborative efforts among stakeholders to fully realize the potential of digital transformation in health care. This research highlights the impact of digital health in creating a health care system that focuses on providing high-quality, efficient, and patient-centered care.
Collapse
Affiliation(s)
- Lan Zhang
- Department of Public Administration, Law School, Hangzhou City University, Hangzhou, China
| | - Christopher Bullen
- National Institute for Health Innovation, University of Auckland, Auckland, New Zealand
| | - Jinsong Chen
- Department of Public Administration, Law School, Hangzhou City University, Hangzhou, China
- National Institute for Health Innovation, University of Auckland, Auckland, New Zealand
- School of Public Affairs, Zhejiang University, Hangzhou, China
| |
Collapse
|
17
|
Almeida AM, Lima L, Martins T. Monitoring Patient-Reported Outcomes in Self-management of Postsurgical Symptoms in Oncology: A Scoping Review. Cancer Nurs 2025; 48:31-44. [PMID: 37232525 DOI: 10.1097/ncc.0000000000001250] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 05/27/2023]
Abstract
BACKGROUND Surgery is used widely for cancer treatment, and in most types, after discharge, patients usually report multiple symptoms, which, if not controlled, can put postoperative recovery at risk. Understanding which patient-reported outcomes (PROs) should be monitored could have a significant impact on reducing the symptom burden associated with cancer and its treatment by playing a pivotal role in developing symptom self-management plans and designing tailored approaches to optimize patients' symptom self-management behaviors. OBJECTIVE To map the PROs used for patients' postsurgical symptom self-management after hospital discharge following cancer surgery. INTERVENTIONS/METHODS Our scoping review process was guided by the steps for conducting scoping reviews recommended by the Joanna Briggs Institute. RESULTS The search identified 97 potentially relevant studies, with 27 articles meeting the inclusion criteria. The most frequently assessed and monitored PROs were problems with surgical wounds, more general physical symptoms, psychological functioning outcomes, and quality of life. CONCLUSIONS Our results showed an overall uniformity among the PROs selected to be monitored in surgical cancer patients after hospital discharge. Monitoring through electronic platforms is widely used and seems useful to self-manage symptoms and optimize the recovery of cancer patients after discharge following surgery. IMPLICATIONS FOR PRACTICE This study provides knowledge about PROs that can be applied in oncologic patients after surgery to self-report their symptoms following discharge.
Collapse
Affiliation(s)
- Ana M Almeida
- Author Affiliations: Institute of Biomedical Sciences Abel Salazar of the University of Porto-ICBAS (Mrs Almeida); Imaging Sciences and Radiooncology Department, Portuguese Institute of Oncology of Porto (Mrs Almeida); Nursing School of Porto (Drs Martins and Lima); and Center for Health Technology and Services Research, (CINTESIS@RISE)(Drs Martins and Lima), Porto, Portugal
| | | | | |
Collapse
|
18
|
Golinelli D, Polidoro F, Rosa S, Puzzo A, Guerra G, Raimondi S, Chiaravalloti A, Sisti V, Sanmarchi F, Bravi F, Grilli R, Pia Fantini M, Belluati A. Evaluating the impact of robotic-assisted total knee arthroplasty on quality of care through patient-reported outcome measures in a third-level hospital in Italy: A prospective cohort study. Knee 2025; 52:32-42. [PMID: 39520805 DOI: 10.1016/j.knee.2024.10.009] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/06/2024] [Revised: 10/06/2024] [Accepted: 10/16/2024] [Indexed: 11/16/2024]
Abstract
BACKGROUND With the shift towards personalized medicine, understanding the impact of robotic-assisted total knee arthroplasty (TKA) on patient-reported outcome measures (PROMs) is essential for evaluating its effectiveness and patient satisfaction. The QUAROB (Quality-assessment-of-ROBotic-orthopedic-surgery) study aims at assessing the impact of robotic surgery on quality of care and joint functionality at 6 months post-surgery among patients undergoing robotic-assisted TKA. METHODS This observational, prospective cohort study included patients from Ravenna Hospital, Italy, who underwent elective robotic TKA (2022-2023), and a historical cohort who underwent traditional TKA (2019). PROMs questionnaires (EuropeanQualityofLife-Visual AnalogScale, EQ-VAS, EuropeanQualityofLife-5Dimensions-3Likert, EQ-5D-3L, and KneeinjuryOsteoarthritisOutcomeScore-PatientSatisfaction, KOOS-PS) were administered within 30 days before surgery and 6 months post-surgery. Statistical analysis involved comparing baseline and follow-up PROMs, focusing on patients achieving at least a 10% improvement (Minimal Clinically Important Difference, MCID). RESULTS The study enrolled 214 robotic surgery patients, with 208 completing baseline and 103 completing 6-month follow-up questionnaires. Patients undergoing robotic-assisted TKA demonstrated significant improvements in EQ-VAS, EQ-5D-3L, and KOOS-PS scores at 6 months. A significant proportion of patients achieved improvements exceeding the MCID threshold (68.9% for EQ-VAS, 58.3% for EQ-5D-3L, and 68.9% for KOOS-PS). Robotic TKA patients experienced shorter hospital stays (7 vs. 9 days, p < 0.001) and higher engagement in rehabilitation compared to traditional TKA patients. CONCLUSIONS The QUAROB study provides evidence of the impact and benefits of robotic-assisted TKA, highlighting significant enhancements in PROMs, reduced hospital stays, and increased rehabilitation engagement. These outcomes reinforce the role of robotic technology in improving surgical precision and patient satisfaction in orthopedic surgery.
Collapse
Affiliation(s)
- Davide Golinelli
- Health Services Research, Evaluation and Policy Unit, AUSL Della Romagna, Ravenna, Italy; Department of Biomedical and Neuromotor Sciences, University of Bologna, Italy; Link Campus University, Rome, Italy.
| | - Federico Polidoro
- Division of Orthopedics, S. Maria Delle Croci Hospital, AUSL Della Romagna, Ravenna, Italy
| | - Simona Rosa
- Health Services Research, Evaluation and Policy Unit, AUSL Della Romagna, Ravenna, Italy; Department of Biomedical and Neuromotor Sciences, University of Bologna, Italy
| | - Agnese Puzzo
- Division of Orthopedics, S. Maria Delle Croci Hospital, AUSL Della Romagna, Ravenna, Italy
| | - Giovanni Guerra
- Division of Orthopedics, S. Maria Delle Croci Hospital, AUSL Della Romagna, Ravenna, Italy
| | - Stefano Raimondi
- Division of Orthopedics, S. Maria Delle Croci Hospital, AUSL Della Romagna, Ravenna, Italy
| | - Antonio Chiaravalloti
- Division of Orthopedics, S. Maria Delle Croci Hospital, AUSL Della Romagna, Ravenna, Italy
| | - Valentina Sisti
- Director of Clinical Activities, AUSL Della Romagna, Ravenna, Italy
| | - Francesco Sanmarchi
- Department of Biomedical and Neuromotor Sciences, University of Bologna, Italy
| | - Francesca Bravi
- Director of Clinical Activities, AUSL Della Romagna, Ravenna, Italy
| | - Roberto Grilli
- Health Services Research, Evaluation and Policy Unit, AUSL Della Romagna, Ravenna, Italy
| | - Maria Pia Fantini
- Department of Biomedical and Neuromotor Sciences, University of Bologna, Italy
| | - Alberto Belluati
- Division of Orthopedics, S. Maria Delle Croci Hospital, AUSL Della Romagna, Ravenna, Italy
| |
Collapse
|
19
|
Li L, Gong X. Development of Patient-Centered End-of-Life Care Quality Measures in China: A Modified Delphi Process. J Palliat Care 2024:8258597241302297. [PMID: 39648711 DOI: 10.1177/08258597241302297] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/10/2024]
Abstract
Objective: Patient-centered care is widely recognized as a crucial component of high-quality end-of-life care. As this approach remains limited in China, this study sought to develop quality measures specifically tailored to end-of-life care within the country. Methods: Initial indicators were established through a comprehensive review of existing measures. Using the modified Delphi Method, a two-round survey with experts (n = 14) was applied to evaluate the importance of each item. Results: The authoritative coefficient of two rounds of expert consultation was 0.86 and 0.87, and the Kendall coefficient of concordance for the two rounds was 0.232 and 0.270 (P < 0.001), respectively, demonstrating an acceptable consensus among the experts. As a result, 31 key quality indicators were identified and deemed important. Conclusions: This study developed a scale for patient-centered end-of-life care quality measurement in China, consisting of six dimensions and 31 indicators. This scale lays a solid foundation for quality improvement initiatives and future development of patient-centered end-of-life care.
Collapse
Affiliation(s)
- Lumeng Li
- School of Social and Public Administration, East China University of Science and Technology, Shanghai, China
| | - Xiuquan Gong
- School of Social and Public Administration, East China University of Science and Technology, Shanghai, China
| |
Collapse
|
20
|
Wang XS, Srour SA. Patient-reported outcomes after CAR T-cell therapy in patients with hematological malignancies. HEMATOLOGY. AMERICAN SOCIETY OF HEMATOLOGY. EDUCATION PROGRAM 2024; 2024:102-108. [PMID: 39644035 DOI: 10.1182/hematology.2024000536] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 12/09/2024]
Abstract
The remarkable improvement in survival among individuals with hematological malignancies receiving chimeric antigen receptor (CAR) T-cell therapy has highlighted the growing unmet need to incorporate patient-centered assessments in management guidelines for these patients. That CAR T-cell therapy is associated with unique toxicities and relatively high symptom burden in the first few weeks after cell infusion is well known. Magnifying the patient's voice by using patient-reported outcomes (PROs) might support personalized intervention in the acute-care setting, optimize the use of medical resources, improve satisfaction with therapy, and enhance survival benefit. However, various factors impede PRO use in routine patient care: (1) the feasibility of PRO assessment during the acute phase of treatment, especially in patients experiencing neurological toxicities, is not well established; (2) although PROs are widely used in drug- development trials, the assessment tools used in clinical trials primarily inform quality-of-life or safety comparisons among study arms and are rarely the proper tools for assessing and capturing clinically meaningful adverse events that should be monitored in routine patient care; (3) PRO data that could guide how best to monitor and capture the delayed effects of CAR T-cell therapy in long-term survivors are limited. There is a pressing need to overcome these barriers to integrating evidence-based PROs into standard-of-care guidelines for patients receiving CAR T-cell therapy. In this review, we present the current state of PRO utilization in CAR T-cell therapy. We also discuss practical approaches and future directions for successful implementation of PROs in the care of patients receiving CAR T-cell therapy.
Collapse
Affiliation(s)
| | - Samer A Srour
- University of Texas M.D. Anderson Cancer Center, Houston, TX
| |
Collapse
|
21
|
Jaeger R, Mosku N, Paganini D, Schelling G, van Oudenaarde K, Falkowski AL, Guggenberger R, Studer G, Bode-Lesniewska B, Heesen P, Fuchs B. Enhancing Patient Experience in Sarcoma Core Biopsies: The Role of Communication, Anxiety Management, and Pain Control. Cancers (Basel) 2024; 16:3901. [PMID: 39682090 DOI: 10.3390/cancers16233901] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/29/2024] [Revised: 11/09/2024] [Accepted: 11/16/2024] [Indexed: 12/18/2024] Open
Abstract
Background/Objectives: This study evaluates the effectiveness of communication strategies and pain management protocols to enhance patients' experiences during sarcoma core biopsies. Recognizing the complexity and anxiety associated with sarcoma diagnoses, this research aims to assess the utility of the Invasive Procedure Assessment (IPA) tool, focusing on its ability to identify areas for improvement through Patient-Reported Outcome Measures (PROMs) and Patient-Reported Experience Measures (PREMs). Methods: Conducted at two Integrated Practice Units (IPUs) within the Swiss Sarcoma Network, this study involved 282 consecutive patients who underwent core biopsies. One week post-procedure, patients completed the IPA questionnaire, which included PROMs and PREMs. Statistical analyses explored correlations between physician communication, patient understanding, anxiety, pain, and overall satisfaction. Results: The IPA tool effectively captured patient perspectives on sarcoma core biopsies. A significant positive correlation (rho = 0.619, p < 0.0001) was found between effective physician communication and patient understanding, which was associated with reduced anxiety and pain. Higher anxiety levels strongly correlated with increased pain perception (rho = 0.653, p < 0.0001), emphasizing the need for anxiety management. Patients with malignant tumors reported lower overall satisfaction compared to those with benign tumors (p = 0.0003), highlighting the need for tailored communication and pain management strategies. The data also suggested that clear communication might mitigate overly negative subjective impressions, such as concerns about wound complications. Conclusions: Effective communication and anxiety management are essential for improving patient satisfaction during sarcoma core biopsies. The study emphasizes the need for personalized care strategies tailored to tumor characteristics and patient demographics. Future research should validate these findings in diverse healthcare settings and explore the broader application of the IPA tool across different cultural and demographic contexts.
Collapse
Affiliation(s)
- Ruben Jaeger
- Faculty of Health Sciences and Medicine, University of Lucerne, Frohburgstrasse 3, 6002 Luzern, Switzerland
- Sarcoma Center, Department of Orthopedics and Trauma Surgery, LUKS University Hospital Lucerne, 6000 Luzern, Switzerland
- Sarcoma Center, Department of Orthopedics and Traumatology, Cantonal Hospital Winterthur, 8400 Winterthur, Switzerland
| | - Nasian Mosku
- Sarcoma Center, Department of Orthopedics and Trauma Surgery, LUKS University Hospital Lucerne, 6000 Luzern, Switzerland
| | - Daniela Paganini
- Department of Paediatric Surgery, University Children's Hospital Zurich, University of Zurich, 8008 Zurich, Switzerland
| | - Georg Schelling
- Sarcoma Center, Department of Orthopedics and Trauma Surgery, LUKS University Hospital Lucerne, 6000 Luzern, Switzerland
| | - Kim van Oudenaarde
- Sarcoma Center, Department of Orthopedics and Trauma Surgery, LUKS University Hospital Lucerne, 6000 Luzern, Switzerland
| | - Anna L Falkowski
- Sarcoma Center, Department of Orthopedics and Traumatology, Cantonal Hospital Winterthur, 8400 Winterthur, Switzerland
- Medical Faculty, University of Zurich, 8032 Zurich, Switzerland
- Clinic for Radiology and Nuclear Medicine, Cantonal Hospital Winterthur, Brauerstrasse 15, 8401 Winterthur, Switzerland
| | - Roman Guggenberger
- Sarcoma Center, Department of Orthopedics and Traumatology, Cantonal Hospital Winterthur, 8400 Winterthur, Switzerland
- Clinic for Radiology and Nuclear Medicine, Cantonal Hospital Winterthur, Brauerstrasse 15, 8401 Winterthur, Switzerland
| | - Gabriela Studer
- Faculty of Health Sciences and Medicine, University of Lucerne, Frohburgstrasse 3, 6002 Luzern, Switzerland
- Sarcoma Center, Department of Orthopedics and Trauma Surgery, LUKS University Hospital Lucerne, 6000 Luzern, Switzerland
| | - Beata Bode-Lesniewska
- Faculty of Health Sciences and Medicine, University of Lucerne, Frohburgstrasse 3, 6002 Luzern, Switzerland
- Sarcoma Center, Department of Orthopedics and Trauma Surgery, LUKS University Hospital Lucerne, 6000 Luzern, Switzerland
| | - Philip Heesen
- Sarcoma Center, Department of Orthopedics and Trauma Surgery, LUKS University Hospital Lucerne, 6000 Luzern, Switzerland
- Medical Faculty, University of Zurich, 8032 Zurich, Switzerland
| | - Bruno Fuchs
- Faculty of Health Sciences and Medicine, University of Lucerne, Frohburgstrasse 3, 6002 Luzern, Switzerland
- Sarcoma Center, Department of Orthopedics and Trauma Surgery, LUKS University Hospital Lucerne, 6000 Luzern, Switzerland
- Sarcoma Center, Department of Orthopedics and Traumatology, Cantonal Hospital Winterthur, 8400 Winterthur, Switzerland
| |
Collapse
|
22
|
Etchegary H, King J, Savas S. Whose Responsibility Is It? Implementing Patient-Prioritized Healthcare System Change in Oncology. Curr Oncol 2024; 31:7301-7307. [PMID: 39590168 PMCID: PMC11593104 DOI: 10.3390/curroncol31110538] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/21/2024] [Revised: 11/12/2024] [Accepted: 11/15/2024] [Indexed: 11/28/2024] Open
Abstract
This brief commentary describes the reflections on a fundamental question by the Public Interest Group on Cancer Research, a successful academic-community partnership focused on cancer research, education, public engagement, and advocacy in Canada's Eastern province of Newfoundland and Labrador. Our Group has achieved some success in a short time with very limited funding. It has successfully created public spaces for conversations about cancer care and priorities for research and regularly advocated for health service change prioritized by input from patients and family members. However, we remain challenged in our understanding of how to truly implement change within oncology care contexts that is informed by patients and families affected by cancer. In this short reflection, we hope to raise awareness of this important issue and question whose responsibility it is to work with patients and families and follow through on prioritized healthcare issues and services. We suggest this may be a matter of integrated knowledge translation and a better understanding of where patients and families fit in this space. We hope to encourage reflection and conversation among all relevant stakeholders about how best to implement patient-prioritized change in oncology care and policy.
Collapse
Affiliation(s)
- Holly Etchegary
- Public Interest Group on Cancer Research, St. John’s, NL A1B 3V6, Canada; (J.K.); (S.S.)
- Division of Population Health and Applied Health Sciences, Faculty of Medicine, Memorial University, St. John’s, NL A1B 3V6, Canada
| | - John King
- Public Interest Group on Cancer Research, St. John’s, NL A1B 3V6, Canada; (J.K.); (S.S.)
- Patient/Public Author, St. John’s, NL A5A 4L8, Canada
| | - Sevtap Savas
- Public Interest Group on Cancer Research, St. John’s, NL A1B 3V6, Canada; (J.K.); (S.S.)
- Division of Population Health and Applied Health Sciences, Faculty of Medicine, Memorial University, St. John’s, NL A1B 3V6, Canada
- Division of Biomedical Sciences, Faculty of Medicine, Memorial University, St. John’s, NL A1B 3V6, Canada
- Discipline of Oncology, Faculty of Medicine, Memorial University, St. John’s, NL A1B 3V6, Canada
| |
Collapse
|
23
|
Fan L, Kandel H, Watson SL. Impacts of keratoconus on quality of life: a qualitative study. Eye (Lond) 2024; 38:3136-3144. [PMID: 39043817 PMCID: PMC11544024 DOI: 10.1038/s41433-024-03251-6] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/05/2024] [Revised: 06/01/2024] [Accepted: 07/11/2024] [Indexed: 07/25/2024] Open
Abstract
BACKGROUND/AIMS To identify the domains of quality of life (QoL) in people with keratoconus. METHODS Semi structured in-depth in person and telephone interviews were conducted with participants diagnosed with keratoconus and recruited from the Sydney Eye Hospital, Sydney, Australia. Thematic analysis of interview content was conducted using inductive and deductive processes. Data was collected until thematic saturation was obtained. RESULTS 33 patients with keratoconus with median age 37 (range 18 to 65) years and majority male (n = 25; 75.8%) were interviewed and a total of 2551 quotes coded. Thematic analysis resulted in 7 broad themes, Driving (199 references), Career (259 references), Symptoms (647 references), Enjoyment (149 references), Relationships (250 references), Financial (104 references) and Healthcare (881 references). Most references described a negative relationship between keratoconus and these 7 domains. The diverse QoL issues expressed included frustration with treatment effectiveness, fear of disease progression, inconvenience with contact lenses, forced career changes and job loss, cost of contact lenses, and feelings of isolation and discrimination. Themes and subthemes described a complex and varied relationship between keratoconus and QoL. CONCLUSION Severe quality of life impairment was experienced by keratoconus patients despite treatment. Keratoconus diminishes various aspects of individual's QoL. Therapies able to improve QoL are still needed for keratoconus.
Collapse
Affiliation(s)
- Leo Fan
- Faculty of Medicine and Health, The University of Sydney, Save Sight Institute, Sydney, NSW, Australia
- Sydney Eye Hospital, Sydney, NSW, Australia
| | - Himal Kandel
- Faculty of Medicine and Health, The University of Sydney, Save Sight Institute, Sydney, NSW, Australia
- Sydney Eye Hospital, Sydney, NSW, Australia
| | - Stephanie L Watson
- Faculty of Medicine and Health, The University of Sydney, Save Sight Institute, Sydney, NSW, Australia.
- Sydney Eye Hospital, Sydney, NSW, Australia.
| |
Collapse
|
24
|
Barzilai O, Sahgal A, Rhines LD, Versteeg AL, Sciubba DM, Lazary A, Weber MH, Schuster JM, Boriani S, Bettegowda C, Arnold PM, Clarke MJ, Laufer I, Fehlings MG, Gokaslan ZL, Fisher CG. Patient-Reported and Clinical Outcomes of Surgically Treated Patients With Symptomatic Spinal Metastases: Results From Epidemiology, Process, and Outcomes of Spine Oncology (EPOSO), a Prospective, Multi-Institutional and International Study. Neurosurgery 2024; 95:1148-1157. [PMID: 38832791 PMCID: PMC11449425 DOI: 10.1227/neu.0000000000002989] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/07/2023] [Accepted: 03/18/2024] [Indexed: 06/05/2024] Open
Abstract
BACKGROUND AND OBJECTIVES The palliative impact of spine surgery for metastatic disease is evolving with improvements in surgical technique and multidisciplinary cancer care. The goal of this study was to prospectively evaluate long-term clinical outcomes including health-related quality-of-life (HRQOL) measures, using spine cancer-specific patient-reported-outcome (PRO) measures, in patients with symptomatic spinal metastases who underwent surgical management. METHODS The Epidemiology, Process, and Outcomes of Spine Oncology (EPOSO, ClinicalTrials.gov identifier: NCT01825161) trial is a prospective-observational cohort study that included 10 specialist centers in North America and Europe. Patients aged 18 to 75 years who underwent surgery for spinal metastases were included. Prospective assessments included both spine tumor-specific and generic PRO tools which were collected for a minimum of 2 years post-treatment or until death. RESULTS Two hundred and eighty patients (51.8% female, mean age 57.9 years) were included. At presentation, the mean Charlson Comorbidity Index was 6.0, 35.7% had neurological deficits as defined by the American Spinal Cord Injury Association scores, 47.2% had high-grade epidural spinal cord compression (2-3), and 89.6% had impending or frank instability as measured by a Spinal Instability Neoplastic Score of ≥7. The most common primary tumor sites were breast (20.2%), lung (18.8%), kidney (16.2%), and prostate (6.5%). The median overall survival postsurgery was 501 days, and the 2-year progression-free-survival rate was 38.4%. Compared with baseline, significant and durable improvements in HRQOL were observed at the 6-week, 12-week, 26-week, 1-year, and 2-year follow-up assessments from a battery of PRO questionnaires including the spine cancer-specific, validated, Spine Oncology Study Group Outcomes Questionnaire v2.0, the Short Form 36 version 2, EuroQol-5 Dimension (3L), and pain numerical rating scale score. CONCLUSION Multi-institutional, prospective-outcomes data confirm that surgical decompression and/or stabilization provides meaningful and durable improvements in multiple HRQOL domains, including spine-specific outcomes based on the Spine Oncology Study Group Outcomes Questionnaire v2.0, for patients with metastatic spine disease.
Collapse
Affiliation(s)
- Ori Barzilai
- Department of Neurosurgery, Memorial Sloan Kettering Cancer Center, New York, New York, USA
| | - Arjun Sahgal
- Department of Radiation Oncology, Sunnybrook Health Sciences Centre, University of Toronto, Toronto, Ontario, Canada
| | - Laurence D. Rhines
- Division of Surgery, Department of Neurosurgery, The University of Texas MD Anderson Cancer Centre, Houston, Texas, USA
| | - Anne L. Versteeg
- Division of Surgery, Department of Orthopaedic Surgery, University of Toronto, Toronto, Ontario, Canada
| | - Daniel M. Sciubba
- Department of Neurosurgery, Zucker School of Medicine at Hofstra, Long Island Jewish Medical Center and North Shore University Hospital, Northwell Health, Manhasset, New York, USA
| | - Aron Lazary
- National Center for Spinal Disorders, Buda Health Center, Budapest, Hungary
| | - Michael H. Weber
- Spine Surgery Program, Department of Surgery, McGill University, Montreal, Québec, Canada
| | - James M. Schuster
- Department of Neurosurgery, Hospital of the University of Pennsylvania, Philadelphia, Pennsylvania, USA
| | | | - Chetan Bettegowda
- Department of Neurosurgery, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA
| | - Paul M. Arnold
- Department of Neurosurgery, Carle Foundation Hospital, Urbana, Illinois, USA
| | | | - Ilya Laufer
- Department of Neurosurgery, New York University Langone Health, New York, New York, USA
| | - Michael G. Fehlings
- Division of Neurosurgery and Spine Program, Department of Surgery, University of Toronto, University Health Network, Toronto, Ontario, Canada
| | - Ziya L. Gokaslan
- Department of Neurosurgery, The Warren Alpert Medical School of Brown University, Providence, Rhode Island, USA
| | - Charles G. Fisher
- Spine Surgery Institute, Vancouver General Hospital, University of British Columbia, Vancouver, British Columbia, Canada
| |
Collapse
|
25
|
Ganz-Blaettler U, Liptrott SJ, Tolotti A, Cefalì M, Aeschlimann C, Vilei SB, Colombo I, Hatziandreou E, Kosmidis T, Linardou H, Pfau R, Sgourou S, Sessa C. The active involvement of patients in oncology research. Cancer Treat Rev 2024; 130:102822. [PMID: 39276429 DOI: 10.1016/j.ctrv.2024.102822] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/28/2024] [Revised: 08/30/2024] [Accepted: 08/31/2024] [Indexed: 09/17/2024]
Abstract
The aim of this review is to provide an overview of the status of patient/public involvement (PPI) in oncology research, including definitions, regulatory aspects, ongoing clinical activities in different countries, achievements and difficulties. The 10-year activities of the Swiss Group for Clinical Cancer Research (SAKK) Patient Advisory Board are described, illustrating challenges faced and solutions in daily practice. Even though clinical data are still limited, it appears PPI has great potential for development in oncology. The drive for precision medicine, activities of patient organizations, pharmaceutical industry interest, and strong support from regulatory agencies, are facilitators to integration of PPI throughout the drug development process. Despite the availability of guidance documents providing recommendations for the implementation of PPI, lack of human and structural resources, training for patients / caregivers and healthcare personnel, and lack of collaboration among stakeholders are some of the main barriers reported. More rigorous reporting of PPI in clinical studies is needed, including the methods to evaluate the impact of PPI and in the representation of patients as partner.
Collapse
Affiliation(s)
| | - Sarah Jayne Liptrott
- Oncology Institute of Southern Switzerland, EOC-IOSI, Via A. Gallino 12, CH - 6500 Bellinzona, Switzerland
| | - Angela Tolotti
- Oncology Institute of Southern Switzerland, EOC-IOSI, Via A. Gallino 12, CH - 6500 Bellinzona, Switzerland
| | - Marco Cefalì
- Oncology Institute of Southern Switzerland, EOC-IOSI, Via A. Gallino 12, CH - 6500 Bellinzona, Switzerland
| | | | | | - Ilaria Colombo
- Oncology Institute of Southern Switzerland, EOC-IOSI, Via A. Gallino 12, CH - 6500 Bellinzona, Switzerland
| | - Evi Hatziandreou
- FairLife Lung Cancer Care, 18 Napoleontos Zerva Str., 16675 Glyfada, Greece
| | - Thanos Kosmidis
- CareAcross Ltd, 1 Kings Avenue, London N21 3NA, United Kingdom
| | - Helena Linardou
- 4th Oncology Dept. & Comprehensive Clinical Trials Center, Metropolitan Hospital, Ethn. Makariou 9, Neo Faliro, Athens 18547, Greece
| | - Rosemarie Pfau
- Lymphome.ch - Patientennetz Schweiz, Weidenweg 39, 4147 Aesch, Switzerland
| | - Stavroula Sgourou
- 4th Oncology Dept. & Comprehensive Clinical Trials Center, Metropolitan Hospital, Ethn. Makariou 9, Neo Faliro, Athens 18547, Greece
| | - Cristiana Sessa
- Oncology Institute of Southern Switzerland, EOC-IOSI, Via A. Gallino 12, CH - 6500 Bellinzona, Switzerland.
| |
Collapse
|
26
|
Gustafson Hedov E, Nyberg F, Gustafsson S, Li H, Gisslén M, Sundström J. Person-Centered Web-Based Mobile Health System (Symptoms) for Reporting Symptoms in COVID-19 Vaccinated Individuals: Observational Study of System, Users, and Symptoms. JMIR Form Res 2024; 8:e57514. [PMID: 39476854 PMCID: PMC11561448 DOI: 10.2196/57514] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/20/2024] [Revised: 07/11/2024] [Accepted: 09/23/2024] [Indexed: 11/17/2024] Open
Abstract
BACKGROUND The full spectrum of side effects from COVID-19 vaccinations and infections, including milder symptoms or health effects that do not lead to health care visits, remains unknown. Person-centered self-reporting of symptoms may offer a solution. Monitoring patient-reported outcomes over time will vary in importance for different patients. Individuals have unique needs and preferences, in terms of both communication methods and how the collected information is used to support care. OBJECTIVE This study aims to describe how Symptoms, a system for person-centered self-reporting of symptoms and health-related quality of life, was utilized in investigating COVID-19 vaccine side effects. We illustrate this by presenting data from the Symptoms system in newly vaccinated individuals from the RECOVAC (Register-based large-scale national population study to monitor COVID-19 vaccination effectiveness and safety) study. METHODS During the COVID-19 pandemic, newly vaccinated individuals were identified as the ideal population to query for milder symptoms related to COVID-19 vaccinations and infections. To this end, we used posters in observation areas at 150 vaccination sites across the Västra Götaland region of Sweden, inviting newly vaccinated individuals to use a novel digital system, Symptoms. In the Symptoms system, users can track their symptoms, functioning, and quality of life as often as they wish, using evidence-based patient-reported outcome measures and short numeric rating scales. These scales cover a prespecified list of symptoms based on common COVID-19 symptoms and previously reported vaccine side effects. Participants could also use numeric rating scales for self-defined symptoms if their symptom was not included on the prespecified list. RESULTS A total of 731 people created user accounts and consented to share data for research between July 21, 2021, and September 27, 2022. The majority of users were female (444/731, 60.7%), with a median age of 38 (IQR 30-47) years. Most participants (498/702, 70.9%) did not report any of the comorbidities included in the questionnaire. Of the 731 participants, 563 (77.0%) reported experiencing 1 or more symptoms. The most common symptom was pain at the injection site (486/563, 86.3%), followed by fatigue (181/563, 32.1%) and headache (169/563, 30.0%). In total, 143 unique symptoms were reported. Of these, 29 were from the prespecified list, while the remaining 114 (79.7%) were self-defined entries in the symptom field. This suggests that the flexibility of the self-directed system-allowing individuals to decide which symptoms they consider worth tracking-may be an important feature. CONCLUSIONS Self-reported symptoms in the Symptoms system appeared to align with previously observed post-COVID-19 vaccination symptoms. The system was relatively easy to use and successfully captured broad, longitudinal data. Its person-centered and self-directed design seemed crucial in capturing the full burden of symptoms experienced by users.
Collapse
Affiliation(s)
| | - Fredrik Nyberg
- School of Public Health and Community Medicine, Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden
| | | | - Huiqi Li
- School of Public Health and Community Medicine, Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden
| | - Magnus Gisslén
- Department of Infectious Diseases, Institute of Biomedicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden
- Region Västra Götaland, Department of Infectious Diseases, Sahlgrenska University Hospital, Gothenburg, Sweden
- Public Health Agency of Sweden, Solna, Sweden
| | - Johan Sundström
- Department of Medical Sciences, Uppsala University, Uppsala, Sweden
- The George Institute for Global Health, University of New South Wales, Sydney, Australia
| |
Collapse
|
27
|
Zhu S, Dong Y, Li Y, Wang H, Jiang X, Guo M, Fan T, Song Y, Zhou Y, Han Y. Experiences of Patients With Cancer Using Electronic Symptom Management Systems: Qualitative Systematic Review and Meta-Synthesis. J Med Internet Res 2024; 26:e59061. [PMID: 39466301 PMCID: PMC11555449 DOI: 10.2196/59061] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/01/2024] [Revised: 06/02/2024] [Accepted: 09/11/2024] [Indexed: 10/29/2024] Open
Abstract
BACKGROUND There are numerous symptoms related to cancer and its treatments that can affect the psychosomatic health and quality of life of patients with cancer. The use of electronic symptom management systems (ESMSs) can help patients with cancer monitor and manage their symptoms effectively, improving their health-related outcomes. However, patients' adhesion to ESMSs decreases over time, and little is known about their real experiences with them. Therefore, it is necessary to gain a deep understanding of patients' experiences with ESMSs. OBJECTIVE The purpose of this systematic review was to synthesize qualitative studies on the experiences of patients with cancer using ESMSs. METHODS A total of 12 electronic databases, including PubMed, Web of Science, Cochrane Library, EBSCOhost, Embase, PsycINFO, ProQuest, Scopus, Wanfang database, CNKI, CBM, and VIP, were searched to collect relevant studies from the earliest available record until January 2, 2024. Qualitative and mixed methods studies published in English or Chinese were included. The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement checklist) and the ENTREQ (Enhancing Transparency in Reporting the Synthesis of Qualitative Research) statement were used to improve transparency in reporting the synthesis of the qualitative research. The Critical Appraisal Skills Program (CASP) checklist was used to appraise the methodological quality of the included studies, and a meta-synthesis was conducted to interpret and synthesize the findings. RESULTS A total of 21 studies were included in the meta-synthesis. The experiences of patients with cancer using ESMSs were summarized into three major categories: (1) perceptions and attitudes toward ESMSs; (2) the value of ESMSs; and (3) barriers, requirements, and suggestions for ESMSs. Subsequently, 10 subcategories emerged from the 3 major categories. The meta-synthesis revealed that patients with cancer had both positive and negative experiences with ESMSs. In general, patients recognized the value of ESMSs in symptom assessment and management and were willing to use them, but they still encountered barriers and wanted them to be improved. CONCLUSIONS This systematic review provides implications for developing future ESMSs that improve health-related outcomes for patients with cancer. Future research should focus on strengthening electronic equipment and technical support for ESMSs, improving their functional contents and participation forms, and developing personalized applications tailored to the specific needs and characteristics of patients with cancer. TRIAL REGISTRATION PROSPERO CRD42023421730; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=421730.
Collapse
Affiliation(s)
- Siying Zhu
- School of Nursing, Guangzhou Medical University, Guangzhou, China
| | - Yan Dong
- School of Nursing, Guangzhou Medical University, Guangzhou, China
| | - Yumei Li
- Guangzhou Institute of Cancer Research, the Affiliated Cancer Hospital, Guangzhou Medical University, Guangzhou, China
| | - Hong Wang
- School of Nursing, Guangzhou Medical University, Guangzhou, China
| | - Xue Jiang
- School of Nursing, Guangzhou Medical University, Guangzhou, China
| | - Mingen Guo
- School of Nursing, Guangzhou Medical University, Guangzhou, China
| | - Tiantian Fan
- Guangzhou Institute of Cancer Research, the Affiliated Cancer Hospital, Guangzhou Medical University, Guangzhou, China
| | - Yalan Song
- Guangzhou Institute of Cancer Research, the Affiliated Cancer Hospital, Guangzhou Medical University, Guangzhou, China
| | - Ying Zhou
- School of Nursing, Guangzhou Medical University, Guangzhou, China
| | - Yuan Han
- School of Nursing, Guangzhou Medical University, Guangzhou, China
| |
Collapse
|
28
|
Liu JB, Pusic AL, Melucci AD, Brajcich BC, Fordham MJ, Lapsley JC, Ko CY, Temple LKF. Adding Patient-reported Outcomes to the American College of Surgeons National Surgical Quality Improvement Program: Results of the First 33,842 Patients From 65 Hospitals. Ann Surg 2024; 280:383-393. [PMID: 38860381 DOI: 10.1097/sla.0000000000006382] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 06/12/2024]
Abstract
OBJECTIVE To investigate the initial set of patient-reported outcomes (PROs) in the American College of Surgeons National Surgical Quality Improvement Program (NSQIP) and their associations with 30-day surgical outcomes. BACKGROUND PROs provide important information that can be used to improve routine care and facilitate quality improvement. The American College of Surgeons conducted a demonstration project to capture PROs into the NSQIP to complement clinical data. METHODS From February 2020 to March 2023, 65 hospitals collected Patient-Reported Outcomes Measurement Information System measures assessing global health, pain interference, fatigue, and physical function from patients accrued into the NSQIP. Using multivariable mixed regression, we compared the scores of patients with and without 30-day complications and further analyzed scores exceeding 1-SD worse than national benchmarks. RESULTS Overall, 33842 patients completed the Patient-Reported Outcomes Measurement Information System measures with a median of 58 days (IQR: 47-72) postoperatively. Among patients without complications (n = 31210), 33.9% had PRO scores 1-SD worse than national benchmarks. Patients with complications were 1.7 times more likely to report worse PROs (95% CI: 1.6-1.8). Patients with complications had lower scores for global physical health [adjusted mean difference (AMD): 2.6, 95% CI: 2.2-3.0], lower for global mental health (AMD: 1.8, 95% CI: 1.4-2.2), higher for pain interference (AMD: 2.4, 95% CI: 2.0-2.8), higher fatigue (AMD: 2.7, 95% CI: 2.3-3.1), and lower physical function (AMD: 3.2, 95% CI: 2.8-3.5). CONCLUSIONS Postoperative complications negatively affect multiple key dimensions of patients' health-related quality of life. PROs were well below national benchmarks for many patients, even among those without complications. Identifying solutions to improve PROs after surgery remains a tremendous quality improvement opportunity.
Collapse
Affiliation(s)
- Jason B Liu
- Patient-Reported Outcomes, Value, and Experience Center, Brigham and Women's Hospital, Boston, MA
- Harvard Medical School, Boston, MA
- Division of Surgical Oncology, Brigham and Women's Hospital, Boston, MA
| | - Andrea L Pusic
- Patient-Reported Outcomes, Value, and Experience Center, Brigham and Women's Hospital, Boston, MA
- Harvard Medical School, Boston, MA
- Division of Plastic and Reconstructive Surgery, Brigham and Women's Hospital, Boston, MA
| | - Alexa D Melucci
- Surgical Health Outcomes and Research for Equity (SHORE) Center, Department of Surgery, University of Rochester Medical Center, Rochester, NY
- Division of Colon and Rectal Surgery, Department of Surgery, University of Rochester Medical Center, Rochester, NY
| | - Brian C Brajcich
- Division of Research and Optimal Patient Care, American College of Surgeons, Chicago, IL
| | - Matthew J Fordham
- Division of Research and Optimal Patient Care, American College of Surgeons, Chicago, IL
| | - Jakob C Lapsley
- Division of Research and Optimal Patient Care, American College of Surgeons, Chicago, IL
| | - Clifford Y Ko
- Division of Research and Optimal Patient Care, American College of Surgeons, Chicago, IL
- The David Geffen School of Medicine at UCLA, Los Angeles, CA
| | - Larissa K F Temple
- Surgical Health Outcomes and Research for Equity (SHORE) Center, Department of Surgery, University of Rochester Medical Center, Rochester, NY
- Division of Colon and Rectal Surgery, Department of Surgery, University of Rochester Medical Center, Rochester, NY
| |
Collapse
|
29
|
Jibb LA, Liu W, Stinson JN, Nathan PC, Chartrand J, Alberts NM, Hashemi E, Masama T, Pease HG, Torres LB, Cortes HG, Kuczynski S, Liu S, La H, Fortier MA. Supporting parent capacity to manage pain in young children with cancer at home: Co-design and usability testing of the PainCaRe app. PAEDIATRIC & NEONATAL PAIN 2024; 6:80-88. [PMID: 39473834 PMCID: PMC11514300 DOI: 10.1002/pne2.12097] [Citation(s) in RCA: 1] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Received: 06/27/2022] [Revised: 01/19/2023] [Accepted: 01/25/2023] [Indexed: 04/04/2025]
Abstract
Young children receiving outpatient cancer care are vulnerable to undermanaged pain. App-based solutions that provide pain treatment advice to parents in real-time and in all environments may improve access to quality pain care. We used a parent co-design approach involving iterative rounds of user testing and software modification to develop a usable Pain Caregiver Resource (PainCaRe) real-time pediatric cancer pain management app. Parents of children (2-11 years) with cancer completed three standardized modules using a PainCaRe prototype. App usability and acceptability were evaluated using the validated System Usability Scale and a thematic analysis of app testing sessions and interviews. Iterative testing sessions were conducted until data saturation. Interview themes were synthesized into action items that guided revisions to PainCaRe and additional testing rounds were conducted as necessary. Twenty-two parents participated in three testing cycles. Overall, parents described PainCaRe as an acceptable and potentially clinically useful pain management tool. Mean system usability scores were in the acceptable scale range during each testing cycle. Usability issues identified and resolved included those related to software malfunction, complicated app navigation logic, lack of clarity on pain assessment questions, and the need for pain management advice specifically tailored to child developmental stage. Using co-design methods, the PainCaRe cancer pain management app was successfully refined for its acceptability and utility to parents. Next steps will include a PainCaRe pilot study before evaluating the impact of the app on younger children's pain outcomes in a randomized controlled trial.
Collapse
Affiliation(s)
- Lindsay A. Jibb
- University of TorontoTorontoOntarioCanada
- Hospital for Sick ChildrenTorontoOntarioCanada
| | - William Liu
- Faculty of Health SciencesMcMaster UniversityHamiltonOntarioCanada
| | - Jennifer N. Stinson
- University of TorontoTorontoOntarioCanada
- Hospital for Sick ChildrenTorontoOntarioCanada
| | - Paul C. Nathan
- University of TorontoTorontoOntarioCanada
- Hospital for Sick ChildrenTorontoOntarioCanada
| | - Julie Chartrand
- Faculty of Health SciencesUniversity of OttawaOttawaOntarioCanada
- Children's Hospital of Eastern OntarioOttawaOntarioCanada
| | | | | | | | | | - Lessley B. Torres
- University of California IrvineIrvineCaliforniaUSA
- CHOC Children's HospitalOrangeCaliforniaUSA
- UCI Center on Stress and HealthOrangeCaliforniaUSA
| | - Haydee G. Cortes
- University of California IrvineIrvineCaliforniaUSA
- CHOC Children's HospitalOrangeCaliforniaUSA
- UCI Center on Stress and HealthOrangeCaliforniaUSA
| | - Susan Kuczynski
- Ontario Parents Advocating for Children with CancerTorontoOntarioCanada
| | - Sam Liu
- University of VictoriaVictoriaBritish ColumbiaCanada
- Pathverse Inc.VictoriaBritish ColumbiaCanada
| | - Henry La
- Pathverse Inc.VictoriaBritish ColumbiaCanada
| | - Michelle A. Fortier
- University of California IrvineIrvineCaliforniaUSA
- CHOC Children's HospitalOrangeCaliforniaUSA
- UCI Center on Stress and HealthOrangeCaliforniaUSA
| |
Collapse
|
30
|
Roberts NA, Pelecanos A, Alexander K, Wyld D, Janda M. Implementation of Patient-Reported Outcomes in a Medical Oncology Setting (the iPROMOS Study): Type II Hybrid Implementation Study. J Med Internet Res 2024; 26:e55841. [PMID: 39190468 PMCID: PMC11387919 DOI: 10.2196/55841] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/27/2023] [Revised: 04/25/2024] [Accepted: 05/13/2024] [Indexed: 08/28/2024] Open
Abstract
BACKGROUND Clinical trials have demonstrated that patient-reported outcome measures (PROMs) can improve mortality and morbidity outcomes when used in clinical practice. OBJECTIVE This study aimed to prospectively investigate the implementation of PROMs in routine oncology. Outcomes measured included improved symptom detection, clinical response to symptom information, and health service outcomes. METHODS Two of 12 eligible clinics were randomized to implement symptom PROMs in a medical oncology outpatient department in Australia. Randomization was carried out at the clinic level. Patients in control clinics continued with usual care; those in intervention clinics completed a symptom PROM at presentation. This was a pilot study investigating symptom detection, using binary logistic models, and clinical response to PROMs investigated using multiple regression models. RESULTS A total of 461 patient encounters were included, consisting of 242 encounters in the control and 222 in the intervention condition. Patients in these clinics most commonly had head and neck, lung, prostate, breast, or colorectal cancer and were seen in the clinic for surveillance and oral or systemic treatments for curative, metastatic, or palliative cancer care pathways. Compared with control encounters, the proportion of symptoms detected increased in intervention encounters (odds ratio 1.05, 95% CI 0.99-1.11; P=.08). The odds of receiving supportive care, demonstrated by nonroutine allied health review, increased in the intervention compared with control encounters (odds ratio 3.54, 95% CI 1.26-9.90; P=.02). CONCLUSIONS Implementation of PROMs in routine care did not significantly improve symptom detection but increased the likelihood of nonroutine allied health reviews for supportive care. Larger studies are needed to investigate health service outcomes. TRIAL REGISTRATION Australian New Zealand Clinical Trials Registry ACTRN12618000398202; https://tinyurl.com/3cxbemy4.
Collapse
Affiliation(s)
- Natasha Anne Roberts
- The University of Queensland Centre for Clinical Research, Herston, Australia
- Surgical Treatment and Rehabilitation Service Metro North Health and University of Queensland, Herston, Australia
| | - Anita Pelecanos
- QIMR Berghofer Medical Research Institute, Herston, Australia
| | - Kimberly Alexander
- School of Nursing, Queensland University of Technology, Kelvin Grove, Australia
| | - David Wyld
- Cancer Care Services, Royal Brisbane and Women's Hospital, Herston, Australia
- The University of Queensland Clinical School, St Lucia, Australia
| | - Monika Janda
- The University of Queensland Centre for Clinical Research, Herston, Australia
| |
Collapse
|
31
|
Yi H, Ou-Yang X, Hong Q, Liu L, Liu M, Wang Y, Zhang G, Ma F, Mu J, Mao Y. Patient-reported outcomes in lung cancer surgery: A narrative review. Asian J Surg 2024:S1015-9584(24)01677-4. [PMID: 39117541 DOI: 10.1016/j.asjsur.2024.07.304] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/13/2024] [Revised: 07/17/2024] [Accepted: 07/25/2024] [Indexed: 08/10/2024] Open
Abstract
Lung cancer is a leading cause of cancer-related mortality worldwide, profoundly affecting patients' quality of life. Patient-reported outcomes (PROs) provide essential insights from the patients' perspective, a crucial aspect often overlooked by traditional clinical outcomes. This review synthesizes research on the role of PROs in lung cancer surgery to enhance patient care and outcomes. We conducted a comprehensive literature search across PubMed, Scopus, and Web of Science up to March 2024, using terms such as "lung cancer," "Patient Reported Outcome," "lobectomy," "segmentectomy," and "lung surgery." The criteria included original studies on lung cancer patients who underwent surgical treatment and reported on PROs. After screening and removing duplicates, reviews, non-English articles, and irrelevant studies, 36 research articles were selected, supported by an additional 53 publications, totaling 89 references. The findings highlight the utility of PROs in assessing post-surgical outcomes, informing clinical decisions, and facilitating patient-centered care. However, challenges in standardization, patient burden, and integration into clinical workflows remain, underscoring the need for further research and methodological refinement. PROs are indispensable for understanding the quality-of-life post-surgery and enhancing communication and decision-making in clinical practice. Their integration into routine care is vital for a holistic approach to lung cancer treatment, promising significant improvements in patient outcomes and quality of care.
Collapse
Affiliation(s)
- Hang Yi
- Department of Thoracic Surgery, National Cancer Center/National Clinical Research Center for Cancer/Cancer Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing, 100021, China
| | - Xu Ou-Yang
- Shantou University Medical College, Shantou, 515041, China
| | - Qian Hong
- Department of Thoracic Surgery, National Cancer Center/National Clinical Research Center for Cancer/Cancer Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing, 100021, China
| | - Lu Liu
- Department of Thoracic Surgery, National Cancer Center/National Clinical Research Center for Cancer/Cancer Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing, 100021, China
| | - Man Liu
- Department of Thoracic Surgery, National Cancer Center/National Clinical Research Center for Cancer/Cancer Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing, 100021, China
| | - Yan Wang
- The Johns Hopkins University, Bloomberg School of Public Health, Epidemiology, Baltimore, MD, USA
| | - Guochao Zhang
- Department of Thoracic Surgery, National Cancer Center/National Clinical Research Center for Cancer/Cancer Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing, 100021, China
| | - Fengyan Ma
- Department of Thoracic Surgery, National Cancer Center/National Clinical Research Center for Cancer/Cancer Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing, 100021, China.
| | - Juwei Mu
- Department of Thoracic Surgery, National Cancer Center/National Clinical Research Center for Cancer/Cancer Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing, 100021, China.
| | - Yousheng Mao
- Department of Thoracic Surgery, National Cancer Center/National Clinical Research Center for Cancer/Cancer Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College, Beijing, 100021, China.
| |
Collapse
|
32
|
Lan Z, Zeng C, Li Z, Xia X, Mo A, Li X, Ben X, Zhou H, Deng C, Chen R, Shi Q, Tang Y, Qiao G. Early patient-reported outcomes after robotic-assisted versus video-assisted thoracoscopic lobectomy. Thorac Cancer 2024; 15:1563-1571. [PMID: 38816940 PMCID: PMC11246782 DOI: 10.1111/1759-7714.15379] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/05/2024] [Revised: 05/07/2024] [Accepted: 05/11/2024] [Indexed: 06/01/2024] Open
Abstract
BACKGROUND Robotic-assisted thoracoscopic surgery (RATS) can achieve traditional clinical outcomes comparable to those of video-assisted thoracoscopic surgery (VATS). However, patient-reported outcomes (PROs) during the early period after RATS and VATS remain unclear. This study aimed to utilize longitudinal electronic PRO (ePRO) assessments to evaluate symptom burden and functional status between these approaches from patients' perspective. METHODS This study comprised patients who underwent lobectomy via RATS or VATS for non-small cell lung cancer. We collected multiple-time-point PROs data from the prospective longitudinal study via an ePRO system. Symptom severity and function status were assessed using the perioperative symptom assessment for patients undergoing lung surgery and were analyzed between groups using linear mixed-effects models. RESULTS Of the 164 patients, 42 underwent RATS and 122 underwent VATS. After propensity score matching (PSM), 42 RATS and 84 VATS exhibited similar baseline characteristics. During the 7-day postoperative period, participants underwent RATS reported milder pain (p = 0.014), coughing (p < 0.001), drowsiness (p = 0.001), and distress (p = 0.045) compared with those underwent VATS. Moreover, participants in RATS group showed less functional interference with walking (p < 0.001) and general activity (p < 0.001). RATS exhibited a shorter postoperative hospitalization (p = 0.021) but higher hospital cost (p < 0.001). Meanwhile, short-term clinical outcomes of operative time, dissected lymph node stations, chest tube drainage, and postoperative complication rates were comparable. CONCLUSION PROs are important metrics for assessing patients' recovery after lobectomy. Compared with VATS, RATS may induce less symptom burden and better functional status for patients in the early postoperative period.
Collapse
Affiliation(s)
- Zihua Lan
- Department of Thoracic SurgeryGuangdong Provincial People's Hospital (Guangdong Academy of Medical Sciences), Southern Medical UniversityGuangzhouChina
- Shantou University Medical CollegeShantouChina
| | - Cheng Zeng
- Department of Thoracic SurgeryGuangdong Provincial People's Hospital (Guangdong Academy of Medical Sciences), Southern Medical UniversityGuangzhouChina
- Department of Pulmonary Nodules Surgerythe First People's Hospital of FoshanFoshanChina
| | - Zijie Li
- Department of Thoracic SurgeryGuangdong Provincial People's Hospital (Guangdong Academy of Medical Sciences), Southern Medical UniversityGuangzhouChina
- Shantou University Medical CollegeShantouChina
| | - Xin Xia
- Department of Thoracic SurgeryGuangdong Provincial People's Hospital (Guangdong Academy of Medical Sciences), Southern Medical UniversityGuangzhouChina
| | - Aotian Mo
- Department of Thoracic SurgeryGuangdong Provincial People's Hospital (Guangdong Academy of Medical Sciences), Southern Medical UniversityGuangzhouChina
| | - Xianglin Li
- Department of Thoracic SurgeryGuangdong Provincial People's Hospital (Guangdong Academy of Medical Sciences), Southern Medical UniversityGuangzhouChina
- Guangdong Cardiovascular Institute, Guangdong Provincial People's Hospital, Guangdong Academy of Medical SciencesGuangzhouChina
| | - Xiaosong Ben
- Department of Thoracic SurgeryGuangdong Provincial People's Hospital (Guangdong Academy of Medical Sciences), Southern Medical UniversityGuangzhouChina
| | - Haiyu Zhou
- Department of Thoracic SurgeryGuangdong Provincial People's Hospital (Guangdong Academy of Medical Sciences), Southern Medical UniversityGuangzhouChina
| | - Cheng Deng
- Department of Thoracic SurgeryGuangdong Provincial People's Hospital (Guangdong Academy of Medical Sciences), Southern Medical UniversityGuangzhouChina
| | - Rixin Chen
- Department of Thoracic SurgeryGuangdong Provincial People's Hospital (Guangdong Academy of Medical Sciences), Southern Medical UniversityGuangzhouChina
- Research Center of Medical Sciences, Guangdong Provincial People's Hospital (Guangdong Academy of Medical Sciences), Southern Medical UniversityGuangzhouChina
| | - Qiuling Shi
- College of Public Health, Chongqing Medical UniversityChongqingChina
- State Key Laboratory of Ultrasound in Medicine and Engineering, College of Biomedical Engineering, Chongqing Medical UniversityChongqingChina
| | - Yong Tang
- Department of Thoracic SurgeryGuangdong Provincial People's Hospital (Guangdong Academy of Medical Sciences), Southern Medical UniversityGuangzhouChina
| | - Guibin Qiao
- Department of Thoracic SurgeryGuangdong Provincial People's Hospital (Guangdong Academy of Medical Sciences), Southern Medical UniversityGuangzhouChina
| |
Collapse
|
33
|
Majorowicz RR, Kalantar-Zadeh K. Practical Use of Patient-Reported Outcome Measures in Chronic Kidney Disease-Associated Pruritus. J Ren Nutr 2024; 34:294-301. [PMID: 38286359 DOI: 10.1053/j.jrn.2024.01.002] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/27/2023] [Accepted: 01/08/2024] [Indexed: 01/31/2024] Open
Abstract
Regulatory and clinical stakeholders are increasingly advocating for the use of patient-reported outcome (PRO) measures; however, the use of PROs is still not widespread. Patient reports are often the best ways to diagnose and monitor the effect of treatment on symptoms when the symptoms are subjective, as with pruritus. While many PRO tools are available to assess the severity of pruritus and its impact on quality of life (e.g., sleep), these are not used in a consistent manner and their results may not translate into clinical action. In this article, we present an introduction to PROs and their use in the assessment of chronic kidney disease-associated pruritus, as well as a practical guide to some of the PRO tools currently available, to empower all members of the nephrology patient care team to use these tools appropriately for the benefit of the patient.
Collapse
Affiliation(s)
- Rachael R Majorowicz
- Dialysis Dietitian, Division of Endocrinology, Diabetes, Metabolism, and Nutrition, Mayo Clinic, Rochester, Minnesota.
| | - Kamyar Kalantar-Zadeh
- Adjunct Professor of Epidemiology, Department of Epidemiology, UCLA Fielding School of Public Health, Los Angeles, California
| |
Collapse
|
34
|
Mooney K, Beck SL, Wilson C, Coombs L, Whisenant M, Moraitis AM, Sloss EA, Alekhina N, Lloyd J, Steinbach M, Nicholson B, Iacob E, Donaldson G. Assessing Patient Perspectives and the Health Equity of a Digital Cancer Symptom Remote Monitoring and Management System. JCO Clin Cancer Inform 2024; 8:e2300243. [PMID: 39042843 DOI: 10.1200/cci.23.00243] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/17/2023] [Revised: 03/05/2024] [Accepted: 05/31/2024] [Indexed: 07/25/2024] Open
Abstract
PURPOSE People with cancer experience poorly controlled symptoms that persist between treatment visits. Automated digital technology can remotely monitor and facilitate symptom management at home. Essential to digital interventions is patient engagement, user satisfaction, and intervention benefits that are distributed across patient populations so as not to perpetuate inequities. We evaluated Symptom Care at Home (SCH), an automated digital platform, to determine patient engagement, satisfaction, and whether intervention subgroups gained similar symptom reduction benefits. METHODS 358 patients with cancer receiving a course of chemotherapy were randomly assigned to SCH or usual care (UC). Both groups reported daily on 11 symptoms and completed the SF36 (Short Form Health Survey) monthly. SCH participants received immediate automated self-care coaching on reported symptoms. As needed, nurse practitioners followed up for poorly controlled symptoms. RESULTS The average participant was White (83%), female (75%), and urban-dwelling (78.6%). Daily call adherence was 90% of expected days. Participants reported high user satisfaction. SCH participants had lower symptom burden than UC in all subgroups: age, sex, race, income, residence type, diagnosis, and stage (all P < .001 effect size 0.33-0.65), except for stages I and II cancers. Non-White and lower-income SCH participants gained a higher magnitude of symptom reduction than White participants and higher-income participants. Additionally, SCH men gained higher SF36 mental health (MH) benefit. There were no differences on other SF36 indices. CONCLUSION Participants were highly satisfied and consistently engaged the SCH platform. SCH men gained large MH improvements, perhaps from increased comfort in sharing concerns through automated interactions. Although all intervention subgroups benefited, non-White participants and those with lower income gained higher symptom reduction benefit, suggesting that systematic care through digital tools can overcome existing disparities in symptom care outcomes.
Collapse
Affiliation(s)
- Kathi Mooney
- College of Nursing, University of Utah, Salt Lake City, UT
- Huntsman Cancer Institute, University of Utah, Salt Lake City, UT
| | - Susan L Beck
- College of Nursing, University of Utah, Salt Lake City, UT
- Huntsman Cancer Institute, University of Utah, Salt Lake City, UT
| | - Christina Wilson
- School of Nursing, University of Alabama at Birmingham, Birmingham, AL
| | - Lorinda Coombs
- School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, NC
| | - Meagan Whisenant
- Department of Behavioral Science, University of Texas MD Anderson Cancer Center, Houston, TX
| | - Ann Marie Moraitis
- Department of Pediatric Oncology, Dana Farber Cancer Institute, Boston, MA
| | | | | | - Jennifer Lloyd
- College of Nursing, University of Utah, Salt Lake City, UT
- Huntsman Cancer Institute, University of Utah, Salt Lake City, UT
| | - Mary Steinbach
- College of Nursing, University of Utah, Salt Lake City, UT
- Huntsman Cancer Institute, University of Utah, Salt Lake City, UT
| | | | - Eli Iacob
- College of Nursing, University of Utah, Salt Lake City, UT
| | - Gary Donaldson
- College of Nursing, University of Utah, Salt Lake City, UT
- School of Medicine, University of Utah, Salt Lake City, UT
| |
Collapse
|
35
|
Wang XS, Shi Q, Shen SE, Letona E, Kamal M, Cleeland CS, Aloia T, Gottumukkala V. Patient-reported outcomes after oncologic hepatic resection predict the risk of delayed readiness to return to intended oncologic therapy (RIOT). EUROPEAN JOURNAL OF SURGICAL ONCOLOGY 2024; 50:108396. [PMID: 38754314 DOI: 10.1016/j.ejso.2024.108396] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/28/2024] [Revised: 04/29/2024] [Accepted: 05/06/2024] [Indexed: 05/18/2024]
Abstract
BACKGROUND Optimal surgical recovery is critical to readiness to return to intended oncologic therapy (RIOT). The current study defined the value of patient-reported outcomes (PROs) in predicting the risk for delayed RIOT after oncologic hepatic resection. METHODS In a prospective longitudinal study, perioperative symptoms were assessed using a valid PRO assessment tool, the MD Anderson Symptom Inventory module for hepatectomy perioperative care (MDASI-PeriOp-Hep), for 4 weeks after surgery. The timed up and go test (TUGT) was administered before surgery, by discharge day, and at the first postoperative follow-up visit. Multivariate logistic regression analysis assessed the predictive value of PROs for delayed RIOT. RESULTS We enrolled 210 patients and analyzed 148 patients who received adjuvant chemotherapy and contributed more than 3 PRO assessments postoperatively. About 36 percent of the patients had delayed RIOT (>5 weeks, range 1-14 weeks). MDASI scores for drowsiness, fatigue, dry mouth, and interference with general activity, walking, and work on day 7 after discharge and MDASI scores for incisional tightness, fatigue, dry mouth, shortness of breath, and interference with work on day 14 after discharge were associated with delayed RIOT (all P < 0.05). Walking and general activity items on the MDASI-Interference subscale on day 7 after discharge were highly correlated with prolonged TUGT scores at discharge (P < 0.01). CONCLUSION We defined clinically meaningful PROs on MDASI-PeriOp-Hep after hepatic resection that predicted increased risk of delayed RIOT. These findings highlight the importance PROs for monitoring symptoms and functioning 1-2 weeks after discharge to be implementing into perioperative care.
Collapse
Affiliation(s)
- Xin Shelley Wang
- Department of Symptom Research, The University of Texas MD Anderson Cancer Center, Houston, TX, USA.
| | - Qiuling Shi
- School of Public Health, Chongqing Medical University, Chongqing, China
| | - Shu-En Shen
- Department of Symptom Research, The University of Texas MD Anderson Cancer Center, Houston, TX, USA
| | - Elizabeth Letona
- Department of Symptom Research, The University of Texas MD Anderson Cancer Center, Houston, TX, USA
| | - Mona Kamal
- Department of Symptom Research, The University of Texas MD Anderson Cancer Center, Houston, TX, USA
| | - Charles S Cleeland
- Department of Symptom Research, The University of Texas MD Anderson Cancer Center, Houston, TX, USA
| | | | - Vijaya Gottumukkala
- Department of Anesthesia and Perioperative Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX, USA
| |
Collapse
|
36
|
Cherrez-Ojeda I, Bousquet J, Giménez-Arnau A, Godse K, Krasowska D, Bartosińska J, Szczepanik-Kułak P, Wawrzycki B, Kolkhir P, Allenova A, Allenova A, Tkachenko S, Teovska Mitrevska N, Mijakoski D, Stoleski S, Kolacinska-Flont M, Kuprys-Lipinska I, Molinska J, Kasperska-Zając A, Zajac M, Zamlynski M, Mihaltan F, Ulmeanu R, Zalewska-Janowska A, Tomaszewska K, Al-Ahmad M, Al-Nesf MA, Ibrahim T, Aqel S, Pesqué D, Rodríguez-González M, Wakida-Kuzunoki GH, Ramon G, Ramon G, Neisinger S, Bonnekoh H, Rukhadze M, Khoshkhui M, Fomina D, Larenas-Linnemann D, Košnik M, Oztas Kara R, Caballero López CG, Liu Q, Ivancevich JC, Ensina LF, Rosario N, Kvedariene V, Ben-Shoshan M, Criado RFJ, Bauer A, Cherrez A, Chong-Neto H, Rojo-Gutierrez MI, Rudenko M, Larco Sousa JI, Lesiak A, Matos E, Muñoz N, Tinoco I, Moreno J, Crespo Shijin C, Hinostroza Logroño R, Sagñay J, Faytong-Haro M, Robles-Velasco K, Zuberbier T, Maurer M. Patient-Reported Outcome Measures in Atopic Dermatitis and Chronic Urticaria Are Underused in Clinical Practice. THE JOURNAL OF ALLERGY AND CLINICAL IMMUNOLOGY. IN PRACTICE 2024; 12:1575-1583.e1. [PMID: 38604531 DOI: 10.1016/j.jaip.2024.03.050] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 11/20/2023] [Revised: 03/25/2024] [Accepted: 03/26/2024] [Indexed: 04/13/2024]
Abstract
BACKGROUND Patient-reported outcome measures (PROMs) are validated and standardized tools that complement physician evaluations and guide treatment decisions. They are crucial for monitoring atopic dermatitis (AD) and chronic urticaria (CU) in clinical practice, but there are unmet needs and knowledge gaps regarding their use in clinical practice. OBJECCTIVE We investigated the global real-world use of AD and CU PROMs in allergology and dermatology clinics as well as their associated local and regional networks. METHODS Across 72 specialized allergy and dermatology centers and their local and regional networks, 2,534 physicians in 73 countries completed a 53-item questionnaire on the use of PROMs for AD and CU. RESULTS Of 2,534 physicians, 1,308 were aware of PROMs. Of these, 14% and 15% used PROMs for AD and CU, respectively. Half of physicians who use PROMs do so only rarely or sometimes. Use of AD and CU PROM is associated with being female, younger, and a dermatologist. The Patient-Oriented Scoring Atopic Dermatitis Index and Urticaria Activity Score were the most common PROMs for AD and CU, respectively. Monitoring disease control and activity are the main drivers of the use of PROMs. Time constraints were the primary obstacle to using PROMs, followed by the impression that patients dislike PROMs. Users of AD and CU PROM would like training in selecting the proper PROM. CONCLUSIONS Although PROMs offer several benefits, their use in routine practice is suboptimal, and physicians perceive barriers to their use. It is essential to attain higher levels of PROM implementation in accordance with national and international standards.
Collapse
Affiliation(s)
- Ivan Cherrez-Ojeda
- Universidad Espiritu Santo, Samborondon, Ecuador; Respiralab Research Group, Guayaquil, Ecuador.
| | - Jean Bousquet
- Institute of Allergology, Charité-Universitätsmedizin Berlin, Berlin, Germany; Allergology and Immunology, Fraunhofer Institute for Translational Medicine and Pharmacology ITMP, Berlin, Germany
| | - Ana Giménez-Arnau
- Department of Dermatology, Hospital del Mar, IMIM, Universitat Pompeu Fabra, Barcelona, Spain
| | - Kiran Godse
- Department of Dermatology, D.Y. Patil University School of Medicine, Mumbai, India
| | - Dorota Krasowska
- Department of Dermatology, Venereology, and Pediatric Dermatology, Medical University of Lublin, Lublin, Poland
| | - Joanna Bartosińska
- Department of Dermatology, Venereology, and Pediatric Dermatology, Medical University of Lublin, Lublin, Poland; Department of Cosmetology and Aesthetic Medicine, Medical University of Lublin, Lublin, Poland
| | - Paulina Szczepanik-Kułak
- Department of Dermatology, Venereology, and Pediatric Dermatology, Medical University of Lublin, Lublin, Poland
| | - Bartłomiej Wawrzycki
- Department of Dermatology, Venereology, and Pediatric Dermatology, Medical University of Lublin, Lublin, Poland
| | - Pavel Kolkhir
- Institute of Allergology, Charité-Universitätsmedizin Berlin, Berlin, Germany; Allergology and Immunology, Fraunhofer Institute for Translational Medicine and Pharmacology ITMP, Berlin, Germany
| | - Anastasiia Allenova
- Laboratory of Immune-Mediated Skin Diseases, Institute of Regenerative Medicine, Biomedical Science and Technology Park, I.M. Sechenov First Moscow State Medical University (Sechenov University), Moscow, Russian Federation
| | - Andrey Allenova
- Institute for Leadership and Health Management, I.M. Sechenov First Moscow State Medical University (Sechenov University), Moscow, Russian Federation; State Budgetary Healthcare Institution of the City of Moscow "City Polyclinic No. 2 10 of the Department of Health of the City of Moscow", Moscow, Russian Federation; Federal State Budgetary Scientific Institution "N.A. Semashko National Research, Institute of Public Health", Moscow, Russian Federation
| | - Sergey Tkachenko
- Russian Medical Academy of Continuous Professional Education of the Ministry of Health of the Russian Federation, Moscow, Russian Federation
| | - Natasa Teovska Mitrevska
- Dermatology Department, Remedika General Hospital, Skopje, Republic of North Macedonia; Department of Dermatology, International Balkan University, Skopje, Republic of North Macedonia
| | - Dragan Mijakoski
- Institute of Occupational Health of RNM, Skopje, Republic of North Macedonia; Faculty of Medicine, SS Cyril and Methodius, University of Skopje, Skopje, Republic of North Macedonia
| | - Sasho Stoleski
- Institute of Occupational Health of RNM, Skopje, Republic of North Macedonia; Faculty of Medicine, SS Cyril and Methodius, University of Skopje, Skopje, Republic of North Macedonia
| | - Marta Kolacinska-Flont
- Department of Internal Medicine, Asthma and Allergy, Barlicki Memorial Hospital, Medical University of Lodz, Poland
| | - Izabela Kuprys-Lipinska
- Department of Internal Medicine, Asthma and Allergy, Barlicki Memorial Hospital, Medical University of Lodz, Poland
| | - Joanna Molinska
- Department of Internal Medicine, Asthma and Allergy, Barlicki Memorial Hospital, Medical University of Lodz, Poland
| | - Alicja Kasperska-Zając
- European Center for Diagnosis and Treatment of Urticaria/Angioedema (GA(2)LEN UCARE /ACARE Network) and Department of Clinical Allergology and Urticaria of Medical University of Silesia, Silesia, Poland
| | - Magdalena Zajac
- European Center for Diagnosis and Treatment of Urticaria/Angioedema (GA(2)LEN UCARE /ACARE Network) and Department of Clinical Allergology and Urticaria of Medical University of Silesia, Silesia, Poland
| | - Mateusz Zamlynski
- European Center for Diagnosis and Treatment of Urticaria/Angioedema (GA(2)LEN UCARE /ACARE Network) and Department of Clinical Allergology and Urticaria of Medical University of Silesia, Silesia, Poland
| | | | | | | | | | - Mona Al-Ahmad
- Microbiology Department, Faculty of Medicine, Kuwait University, Safat, Kuwait
| | - Maryam Ali Al-Nesf
- Allergy and Immunology Division, Medicine Department, Hamad Medical Corporation, Doha, Qatar
| | - Tayseer Ibrahim
- Allergy and Immunology Division, Medicine Department, Hamad Medical Corporation, Doha, Qatar
| | - Sami Aqel
- Department of Dermatology, Universitat Autònoma de Barcelona, Barcelona, Spain
| | - David Pesqué
- Department of Dermatology, Hospital del Mar, IMIM, Universitat Pompeu Fabra, Barcelona, Spain; Department of Dermatology, Universitat Autònoma de Barcelona, Barcelona, Spain
| | | | | | - German Ramon
- Instituto de Alergia e Inmunologia del Sur, GA(2)LEN UCARE/Adcare/Acare Center, Bahia Blanca, Argentina
| | - Gonzalo Ramon
- Institute of Allergology, Charité-Universitätsmedizin Berlin, Berlin, Germany; Allergology and Immunology, Fraunhofer Institute for Translational Medicine and Pharmacology ITMP, Berlin, Germany
| | - Sophia Neisinger
- Institute of Allergology, Charité-Universitätsmedizin Berlin, Berlin, Germany; Allergology and Immunology, Fraunhofer Institute for Translational Medicine and Pharmacology ITMP, Berlin, Germany
| | - Hanna Bonnekoh
- Institute of Allergology, Charité-Universitätsmedizin Berlin, Berlin, Germany; Allergology and Immunology, Fraunhofer Institute for Translational Medicine and Pharmacology ITMP, Berlin, Germany
| | - Maia Rukhadze
- Allergy and Immunology Center, Tbilisi, Georgia/Geomedi Teaching University, Faculty of Medicine, Tbilisi, Georgia
| | - Maryam Khoshkhui
- Allergy Research Center, Mashhad University of Medical Science, Mashhad, Iran
| | - Daria Fomina
- Moscow Practical and Research Center of Allergy and Immunology, Clinical City Hospital, Moscow, Russian Federation; Moscow Department of Clinical Immunology and Allergology, Sechenov First Moscow State Medical University, Astana Medical University, Moscow, Russian Federation
| | | | - Mitja Košnik
- University Clinic of Respiratory and Allergic Diseases, Golnik, Slovenia Medical Faculty, University of Ljubljana, Slovenia
| | - Rabia Oztas Kara
- Department of Dermatology, Sakarya University Faculty of Medicine, Sakarya, Turkey
| | | | - Qiang Liu
- Second Hospital of Hebei Medical University, Shijiazhuang City, Hebei Province, China
| | | | - Luis Felipe Ensina
- Servicio de Alergia e Immunologia, Clinica Santa Isabel, Buenos Aires, Argentina
| | - Nelson Rosario
- Division of Allergy, Clinical Immunology, and Rheumatology, Department of Pediatrics, Federal University of São Paulo and CPAlpha Clinical Research Center, São Paulo, Brazil, (nn)Urticaria Center of Reference and Excellence, Federal University of Parana, Rua General Carneiro, Curitiba, Brazil
| | - Violeta Kvedariene
- Institute of Biomedical Sciences, Department of Pathology, Faculty of Medicine, Vilnius University, Vilnius, Lithuania; Institute of Clinical Medicine, Clinic of Chest Diseases, Immunology and Allergology, Faculty of Medicine, Vilnius, Lithuania
| | - Moshe Ben-Shoshan
- Division of Allergy, Immunology and Dermatology, Department of Pediatrics, McGill University Health Center, Montreal, Quebec, Canada
| | | | - Andrea Bauer
- Department of Dermatology, University Allergy Center, University Hospital Carl Gustav Carus, Technical University, Dresden, Germany
| | - Annia Cherrez
- Department of Dermatology and Allergy, Charité-Universitätsmedizin Berlin, Berlin, Germany
| | - Herberto Chong-Neto
- Department of Pediatrics, Hospital de Clínicas, Federal University of Paraná, Curitiba, Brazil
| | | | - Michael Rudenko
- London Allergy and Immunology Centre, London, United Kingdom
| | | | - Aleksandra Lesiak
- Department of Dermatology, Pediatric Dermatology, and Dermatological Oncology, Medical University of Lodz, Lodz, Poland
| | - Edgar Matos
- Instituto Nacional de Salud del Nino, Lima, Peru
| | - Nelson Muñoz
- Specialist Centre, Muñoz Alergias y Pediatría, Riobamba, Ecuador
| | | | - Jaime Moreno
- Universidad Estatal de Milagro, Cdla. Universitaria "Dr. Romulo Minchala Murillo", Guayas, Milagro, Ecuador
| | | | | | - Juan Sagñay
- Respiralab Research Group, Guayaquil, Ecuador
| | - Marco Faytong-Haro
- Universidad Espiritu Santo, Samborondon, Ecuador; Respiralab Research Group, Guayaquil, Ecuador; Sociology and Demography Department, Pennsylvania State University, University Park, Pa; Ecuadorian Development Research Lab, Daule, Guayas, Ecuador
| | - Karla Robles-Velasco
- Universidad Espiritu Santo, Samborondon, Ecuador; Respiralab Research Group, Guayaquil, Ecuador
| | - Torsten Zuberbier
- Institute of Allergology, Charité-Universitätsmedizin Berlin, Berlin, Germany; Allergology and Immunology, Fraunhofer Institute for Translational Medicine and Pharmacology ITMP, Berlin, Germany
| | - Marcus Maurer
- Institute of Allergology, Charité-Universitätsmedizin Berlin, Berlin, Germany; Allergology and Immunology, Fraunhofer Institute for Translational Medicine and Pharmacology ITMP, Berlin, Germany.
| |
Collapse
|
37
|
Sedhom R, Bates-Pappas GE, Feldman J, Elk R, Gupta A, Fisch MJ, Soto-Perez-de-Celis E. Tumor Is Not the Only Target: Ensuring Equitable Person-Centered Supportive Care in the Era of Precision Medicine. Am Soc Clin Oncol Educ Book 2024; 44:e434026. [PMID: 39177644 DOI: 10.1200/edbk_434026] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 08/24/2024]
Abstract
Communication in oncology has always been challenging. The new era of precision oncology creates prognostic uncertainty. Still, person-centered care requires attention to people and their care needs. Living with cancer portends an experience that is life-altering, no matter what the outcome. Supporting patients and families through this unique experience requires careful attention, honed skills, an understanding of process and balance measures of innovation, and recognizing that supportive care is a foundational element of cancer medicine, rather than an either-or approach, an and-with approach that emphasizes the regular integration of palliative care (PC), geriatric oncology, and skilled communication.
Collapse
Affiliation(s)
- Ramy Sedhom
- Department of Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA
- Leonard Davis Institute of Health Economics, University of Pennsylvania, Philadelphia, PA
- Penn Center for Cancer Care Innovation, Abramson Cancer Center, Penn Medicine, Philadelphia, PA
| | - Gleneara E Bates-Pappas
- Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, NY
| | | | - Ronit Elk
- Center for Palliative and Supportive Care, University of Alabama at Birmingham, Birmingham, AL
- Division of Geriatrics, School of Medicine, University of Alabama at Birmingham, Birmingham, AL
| | - Arjun Gupta
- Division of Hematology, Oncology, and Transplantation, University of Minnesota, Minneapolis
| | | | - Enrique Soto-Perez-de-Celis
- Department of Geriatrics, Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán, Mexico City, Mexico
| |
Collapse
|
38
|
Keny C, Dillon EC, Russell MM, Colley A, Yank V, Tang V. "It's Incapacitated Me in so Many Ways": Older Adults' Lived Experience With Postoperative Symptoms at Home After Major Elective Surgery. Ann Surg 2024; 279:736-742. [PMID: 38050761 PMCID: PMC10997446 DOI: 10.1097/sla.0000000000006170] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/06/2023]
Abstract
OBJECTIVE This qualitative study aimed to explore the challenges faced by older adults regarding the postoperative symptom experience after major elective surgery. BACKGROUND Although extensively studied in oncology settings, the impact of postoperative symptom burden remains largely underexplored in elective major surgery among older adults. METHODS We employed convenience sampling to recruit adults aged 65 years or above undergoing major elective surgery at the University of California, San Francisco. Semistructured interviews regarding the surgical experience were conducted at 1 and 3 months postoperatively. An inductive qualitative approach was used to identify emerging themes. Symptoms revealed by participants during interviews were also captured. RESULTS Nineteen participants completed a 1-month postoperative interview, and 17 additionally completed a 3-month interview. Three themes emerged: (1) postoperative symptoms significantly impacted valued life activities and psychosocial well-being, (2) participants felt "caught off guard" by the intensity and duration of postoperative symptoms, and (3) participants expressed the need for additional support, resources, and education on symptom management. The most frequently mentioned symptoms were postoperative pain (n=12, 63.1%), gastrointestinal discomfort (n=8, 42.1%), and anxiety/stress (n=8, 42.1%) at 1-month postsurgery compared with pain and depression (both n=6, 35.3%) at 3 months. CONCLUSIONS Study participants were surprised by the negative impact of postoperative symptoms on their psychosocial well-being and ability to engage in valued life activities. Symptom burden is an important patient-reported outcome that should be assessed postoperatively. Interventions to minimize postoperative symptom burden in older adults could optimize quality of life and participation in meaningful activities during surgical recovery.
Collapse
Affiliation(s)
- Christina Keny
- Division of Geriatrics, Department of Medicine, University of California, San Francisco, CA
- Division of Geriatrics, Department of Medicine, Veterans Affairs Medical Center, San Francisco, CA
- School of Nursing, University of California San Francisco, San Francisco, CA
| | - Ellis C. Dillon
- Center on Aging, University of Connecticut Health Center, Farmington, CT
| | - Marcia M. Russell
- Department of Surgery, David Geffen School of Medicine at UCLA, Los Angeles, CA
- Department of Surgery, VA Greater Los Angeles Healthcare System, Los Angeles, CA
| | - Alexis Colley
- Department of Surgery, University of California San Francisco, San Francisco, CA
| | - Veronica Yank
- Division of General Internal Medicine, Department of Medicine, University of California San Francisco, San Francisco, CA
| | - Victoria Tang
- Division of Geriatrics, Department of Medicine, University of California, San Francisco, CA
- Division of Geriatrics, Department of Medicine, Veterans Affairs Medical Center, San Francisco, CA
| |
Collapse
|
39
|
Farwati M, Braghieri L, Abdulhai FA, Dabbagh M, Alkhalaileh FA, Younis A, Tabaja C, Farwati A, Amin M, Santangeli P, Nakagawa H, Saliba WI, Kanj M, Callahan TD, Bhargava M, Baranowski B, Rickard J, Sroubek J, Lee J, Tchou PJ, Wazni OM, Hussein AA. Cryoballoon pulmonary vein isolation versus radiofrequency ablation of the pulmonary veins and left atrial posterior wall: Patient-reported outcomes. Pacing Clin Electrophysiol 2024; 47:595-602. [PMID: 38523591 DOI: 10.1111/pace.14943] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/08/2023] [Revised: 01/05/2024] [Accepted: 01/23/2024] [Indexed: 03/26/2024]
Abstract
BACKGROUND Data are lacking on patient-reported outcomes (PRO) following cryoballoon ablation (CBA) versus radiofrequency ablation (RFA). We sought to evaluate QoL and clinical outcomes of cryoballoon pulmonary vein isolation only (CRYO-PVI-ONLY) versus RFA with PVI and posterior wall isolation (RF-PVI+PWI) in a large prospective PRO registry. METHODS Patients who underwent AF ablation (2013-2016) at our institution were enrolled in an automated, prospectively maintained PRO registry. CRYO-PVI-ONLY patients were matched (1:1) with RF-PVI+PWI patients based on age, gender, and type of AF (paroxysmal vs. persistent). QoL and clinical outcomes were assessed using PRO surveys at baseline and at 1-year. The atrial fibrillation symptom severity scale (AFSSS) was the measure for QoL. Additionally, we assessed patient-reported clinical improvement, arrhythmia recurrence, and AF burden (as indicated by AF frequency and duration scores). RESULTS A total of 296 patients were included (148 in each group, 72% paroxysmal). By PRO, a significant improvement in QoL was observed in the overall study population and was comparable between CRYO-PVI-ONLY and RF-PVI+PWI (baseline median AFSSS of 11.5 and 11; reduced to 2 and 4 at 1 year, respectively; p = 0.44). Similarly, the proportion of patients who reported improvement in their overall QoL and AF related symptoms was high and similar between the study groups [92% (CRYO-PVI-ONLY) vs. 92.8% (RF-PVI+PWI); p = 0.88]. Arrhythmia recurrence was significantly more common in the CRYO-PVI-ONLY group (39.7%) compared to RF-PVI+PWI (27.7 %); p = 0.03. Comparable results were observed in paroxysmal and persistent AF. CONCLUSION CRYO-PVI-ONLY and RF-PVI+PWI resulted in comparable improvements in patient reported outcomes including QoL and AF burden; with RF-PVI+PWI being more effective at reducing recurrences.
Collapse
Affiliation(s)
- Medhat Farwati
- Section of Cardiac Pacing and Electrophysiology, Heart and Vascular Institute, Cleveland Clinic, Cleveland, Ohio, USA
| | - Lorenzo Braghieri
- Section of Cardiac Pacing and Electrophysiology, Heart and Vascular Institute, Cleveland Clinic, Cleveland, Ohio, USA
| | - Farah A Abdulhai
- Section of Cardiac Pacing and Electrophysiology, Heart and Vascular Institute, Cleveland Clinic, Cleveland, Ohio, USA
| | - Marwan Dabbagh
- Section of Cardiac Pacing and Electrophysiology, Heart and Vascular Institute, Cleveland Clinic, Cleveland, Ohio, USA
| | - Firas A Alkhalaileh
- Section of Cardiac Pacing and Electrophysiology, Heart and Vascular Institute, Cleveland Clinic, Cleveland, Ohio, USA
| | - Arwa Younis
- Section of Cardiac Pacing and Electrophysiology, Heart and Vascular Institute, Cleveland Clinic, Cleveland, Ohio, USA
| | - Chadi Tabaja
- Section of Cardiac Pacing and Electrophysiology, Heart and Vascular Institute, Cleveland Clinic, Cleveland, Ohio, USA
| | - Amr Farwati
- Section of Cardiac Pacing and Electrophysiology, Heart and Vascular Institute, Cleveland Clinic, Cleveland, Ohio, USA
| | - Mustapha Amin
- Section of Cardiac Pacing and Electrophysiology, Heart and Vascular Institute, Cleveland Clinic, Cleveland, Ohio, USA
| | - Pasquale Santangeli
- Section of Cardiac Pacing and Electrophysiology, Heart and Vascular Institute, Cleveland Clinic, Cleveland, Ohio, USA
| | - Hiroshi Nakagawa
- Section of Cardiac Pacing and Electrophysiology, Heart and Vascular Institute, Cleveland Clinic, Cleveland, Ohio, USA
| | - Walid I Saliba
- Section of Cardiac Pacing and Electrophysiology, Heart and Vascular Institute, Cleveland Clinic, Cleveland, Ohio, USA
| | - Mohamed Kanj
- Section of Cardiac Pacing and Electrophysiology, Heart and Vascular Institute, Cleveland Clinic, Cleveland, Ohio, USA
| | - Thomas D Callahan
- Section of Cardiac Pacing and Electrophysiology, Heart and Vascular Institute, Cleveland Clinic, Cleveland, Ohio, USA
| | - Mandeep Bhargava
- Section of Cardiac Pacing and Electrophysiology, Heart and Vascular Institute, Cleveland Clinic, Cleveland, Ohio, USA
| | - Bryan Baranowski
- Section of Cardiac Pacing and Electrophysiology, Heart and Vascular Institute, Cleveland Clinic, Cleveland, Ohio, USA
| | - John Rickard
- Section of Cardiac Pacing and Electrophysiology, Heart and Vascular Institute, Cleveland Clinic, Cleveland, Ohio, USA
| | - Jakub Sroubek
- Section of Cardiac Pacing and Electrophysiology, Heart and Vascular Institute, Cleveland Clinic, Cleveland, Ohio, USA
| | - Justin Lee
- Section of Cardiac Pacing and Electrophysiology, Heart and Vascular Institute, Cleveland Clinic, Cleveland, Ohio, USA
| | - Patrick J Tchou
- Section of Cardiac Pacing and Electrophysiology, Heart and Vascular Institute, Cleveland Clinic, Cleveland, Ohio, USA
| | - Oussama M Wazni
- Section of Cardiac Pacing and Electrophysiology, Heart and Vascular Institute, Cleveland Clinic, Cleveland, Ohio, USA
| | - Ayman A Hussein
- Section of Cardiac Pacing and Electrophysiology, Heart and Vascular Institute, Cleveland Clinic, Cleveland, Ohio, USA
| |
Collapse
|
40
|
Schooren L, Oberhoff G, Schipper S, Koch A, Kroh A, Olde Damink S, Ulmer TF, Neumann UP, Alizai PH, Schmitz SM. Students and physicians differ in perception of quality of life in patients with tumors of the upper gastrointestinal tract. Sci Rep 2024; 14:9460. [PMID: 38658620 PMCID: PMC11043386 DOI: 10.1038/s41598-024-59350-7] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/06/2023] [Accepted: 04/09/2024] [Indexed: 04/26/2024] Open
Abstract
Health-related quality of life (HRQoL) has recently gained importance as treatment options for tumors of the upper GI tract lead to improved long-term survival. HRQoL is often estimated by physicians even though their reliability and the impact of outside factors such as contact time and level of medical education is unclear. Therefore, in this study we investigated the correlation between physicians', students', and patients' assessment of HRQoL. 54 patients presenting with tumors of the upper GI tract were included and asked to fill out the standardized HRQoL questionnaires EORTC QLQ-C30 and QLQ-OG25. Attending physicians and medical students filled out the same questionnaires through estimation of patients' HRQoL. Correlation was assessed through Pearson's and Kendall's τb coefficients. Physicians' and patients' assessments correlated for one out of six of the functional and a third of the symptom scores. Students' and patients' assessments correlated for one third of the functional and two thirds of the symptom scores. Students tended to underestimate patients' symptom burden while physicians tended to overestimate it. Physicians failed to correctly assess several pathognomonic symptoms in this study. Students showed higher correlation with patients' symptoms than physicians. Even so, this adds to mounting evidence that shows the benefit of using patient-reported outcomes as a gold standard regarding HRQoL.
Collapse
Affiliation(s)
- Lena Schooren
- Department of General, Visceral- and Transplantation Surgery, RWTH Aachen University Hospital, Pauwelsstr. 30, 52074, Aachen, Germany
| | - Grace Oberhoff
- Department of General, Visceral- and Transplantation Surgery, RWTH Aachen University Hospital, Pauwelsstr. 30, 52074, Aachen, Germany
| | - Sandra Schipper
- Department of General, Visceral- and Transplantation Surgery, RWTH Aachen University Hospital, Pauwelsstr. 30, 52074, Aachen, Germany
- Department of Trauma and Reconstructive Sugery, BG Klinikum Bergmanntrost, 06112, Halle, Germany
| | - Alexander Koch
- Department of Gastroenterology, Digestive Diseases and Intensive Care Medicine, RWTH Aachen University Hospital, Pauwelsstr. 30, 52074, Aachen, Germany
| | - Andreas Kroh
- Department of General, Visceral- and Transplantation Surgery, RWTH Aachen University Hospital, Pauwelsstr. 30, 52074, Aachen, Germany
| | - Steven Olde Damink
- Department of General, Visceral- and Transplantation Surgery, RWTH Aachen University Hospital, Pauwelsstr. 30, 52074, Aachen, Germany
- Department of Surgery, Maastricht University Medical Center, P. Debyelaan 25, 6229 HX, Maastricht, The Netherlands
- Department of General-, Visceral- and Transplantation Surgery, University Hospital Essen, Hufelandstr. 55, 45147, Essen, Germany
| | - Tom F Ulmer
- Department of General, Visceral- and Transplantation Surgery, RWTH Aachen University Hospital, Pauwelsstr. 30, 52074, Aachen, Germany
- Department of Surgery, Maastricht University Medical Center, P. Debyelaan 25, 6229 HX, Maastricht, The Netherlands
- Department of General-, Visceral- and Transplantation Surgery, University Hospital Essen, Hufelandstr. 55, 45147, Essen, Germany
| | - Ulf P Neumann
- Department of General, Visceral- and Transplantation Surgery, RWTH Aachen University Hospital, Pauwelsstr. 30, 52074, Aachen, Germany
- Department of Surgery, Maastricht University Medical Center, P. Debyelaan 25, 6229 HX, Maastricht, The Netherlands
- Department of General-, Visceral- and Transplantation Surgery, University Hospital Essen, Hufelandstr. 55, 45147, Essen, Germany
| | - Patrick H Alizai
- Department of General, Visceral- and Transplantation Surgery, RWTH Aachen University Hospital, Pauwelsstr. 30, 52074, Aachen, Germany
- Klinik für Allgemein- und Viszeralchirurgie, Gemeinschaftskrankenhaus Bonn, Prinz-Albert-Straße 40, 53113, Bonn, Germany
| | - Sophia M Schmitz
- Department of General, Visceral- and Transplantation Surgery, RWTH Aachen University Hospital, Pauwelsstr. 30, 52074, Aachen, Germany.
- Department of General-, Visceral- and Transplantation Surgery, University Hospital Essen, Hufelandstr. 55, 45147, Essen, Germany.
| |
Collapse
|
41
|
de Ligt KM, Koppert LB, de Rooij BH, van de Poll-Franse LV, Velikova G, Cardoso F. Seizing the moment: The time for harnessing electronic patient-reported outcome measures for enhanced and sustainable metastatic breast cancer care is now. Breast 2024; 74:103676. [PMID: 38359564 PMCID: PMC10877629 DOI: 10.1016/j.breast.2024.103676] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/20/2023] [Revised: 12/11/2023] [Accepted: 01/31/2024] [Indexed: 02/17/2024] Open
Abstract
The sustainability of healthcare systems is under pressure. Unlike care for many other chronic diseases, cancer care has yet to empower patients in effectively self-managing both the medical and emotional consequences of their condition, including adapting to changes in lifestyle and work, which is essential to achieve optimal health and recovery. Although proposed as a potential solution for sustainable healthcare and support for optimal health and recovery already decades ago, practical implementation of digital care lags behind. We believe electronic patient reported outcome measures (ePROMs) could play an important role in creating sustainable healthcare, both to guide complex treatment pathways and to empower survivors to self-manage consequences of diagnosis and treatment. That is, ePROMs can be used for screening and monitoring of symptoms, but also for treatment decision-making and to facilitate communication about quality of life. We therefore see opportunities for improvements in quality of care, quality of life, and survival of cancer patients, as well as research opportunities, as ePROMs collection can lead to better understanding of care needs. The '10 Actions for Change report' of the Advanced Breast Cancer Global Alliance stresses a critical need for improvement of care for metastatic breast cancer (MBC) patients. We therefore in this paper focus on MBC care and research.
Collapse
Affiliation(s)
- K M de Ligt
- Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX, Amsterdam, the Netherlands.
| | - L B Koppert
- Department of Surgical Oncology, Erasmus MC Cancer Institute, Dr. Molewaterplein 40, 3015 GD, Rotterdam, the Netherlands.
| | - B H de Rooij
- Department of Research and Development, Netherlands Comprehensive Cancer Organisation, Godebaldkwartier 419, 3511 DT, Utrecht, the Netherlands; Department of Medical and Clinical Psychology, Center of Research on Psychological and Somatic Disorders (CoRPS), Tilburg University, Warandelaan 2, 5037 AB, Tilburg, the Netherlands.
| | - L V van de Poll-Franse
- Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX, Amsterdam, the Netherlands; Department of Research and Development, Netherlands Comprehensive Cancer Organisation, Godebaldkwartier 419, 3511 DT, Utrecht, the Netherlands; Department of Medical and Clinical Psychology, Center of Research on Psychological and Somatic Disorders (CoRPS), Tilburg University, Warandelaan 2, 5037 AB, Tilburg, the Netherlands.
| | - G Velikova
- Leeds Institute of Medical Research at St James's, University of Leeds, St James's University Hospital, Woodhouse Lane, LS2 9JT, Leeds, United Kingdom; Leeds Cancer Centre, Leeds Teaching Hospitals NHS Trust, St James's University Hospital, Beckett St, Harehills, LS9 7LP, Leeds, United Kingdom.
| | - F Cardoso
- Breast Unit, Champalimaud Clinical Center/Champalimaud Foundation, Avenida Brasília s/n, 1400-038, Lisbon, Portugal.
| |
Collapse
|
42
|
Singhal S, Dickerson J, Glover MJ, Roy M, Chiu M, Ellis-Caleo T, Hui G, Tamayo C, Loecher N, Wong HN, Heathcote LC, Schapira L. Patient-reported outcome measurement implementation in cancer survivors: a systematic review. J Cancer Surviv 2024; 18:223-244. [PMID: 35599269 DOI: 10.1007/s11764-022-01216-w] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/18/2022] [Accepted: 05/10/2022] [Indexed: 10/18/2022]
Abstract
PURPOSE Patient-reported outcome measurements (PROMs) are increasingly used for cancer patients receiving active treatment, but little is known about the implementation and usefulness of PROMs in cancer survivorship care. This systematic review evaluates how cancer survivors and healthcare providers (HCPs) perceive PROM implementation in survivorship care, and how PROM implementation impacts cancer survivors' health outcomes. METHODS We systematically searched PubMed/MEDLINE, Embase, CINAHL, Web of Science, and Cochrane Database of Systematic Reviews from database inception to February 2022 to identify randomized and nonrandomized studies of PROM implementation in cancer survivors. RESULTS Based on prespecified eligibility criteria, we included 29 studies that reported on 26 unique PROMs. The studies were heterogeneous in study design, PROM instrument, patient demographics, and outcomes. Several studies found that cancer survivors and HCPs had favorable impressions of the utility of PROMs, and a few studies demonstrated that PROM implementation led to improvements in patient quality of life (QoL), with small to moderate effect sizes. CONCLUSIONS We found implementation of PROMs in cancer survivorship care improved health outcomes for select patient populations. Future research is needed to assess the real-world utility of PROM integration into clinical workflows and the impact of PROMs on measurable health outcomes. IMPLICATIONS FOR CANCER SURVIVORS Cancer survivors accepted PROMs. When successfully implemented, PROMs can improve health outcomes after completion of active treatment. We identify multiple avenues to strengthen PROM implementation to support cancer survivors.
Collapse
Affiliation(s)
- Surbhi Singhal
- Department of Medicine, Division of Medical Oncology, Stanford University, Stanford, CA, USA.
| | - James Dickerson
- Department of Medicine, Division of Medical Oncology, Stanford University, Stanford, CA, USA
| | | | - Mohana Roy
- Department of Medicine, Division of Medical Oncology, Stanford University, Stanford, CA, USA
| | - Michelle Chiu
- Department of Medicine, Stanford University, Stanford, CA, USA
| | | | - Gavin Hui
- Department of Medicine, Stanford University, Stanford, CA, USA
| | | | - Nele Loecher
- Department of Mental Health Law and Policy, University of South Florida, Tampa, FL, USA
| | - Hong-Nei Wong
- Lane Medical Library & Knowledge Management Center, Stanford University School of Medicine, Stanford, CA, USA
| | - Lauren C Heathcote
- Health Psychology Section, Department of Psychology, Institute of Psychiatry, Psychology, and Neuroscience, King's College London, London, UK
| | - Lidia Schapira
- Department of Medicine, Division of Medical Oncology, Stanford University, Stanford, CA, USA
| |
Collapse
|
43
|
Monsen RE, Lerdal A, Nordgarden H, Gay CL, Herlofson BB. A comparison of the prevalence of dry mouth and other symptoms using two different versions of the Edmonton Symptom Assessment System on an inpatient palliative care unit. BMC Palliat Care 2024; 23:75. [PMID: 38493155 PMCID: PMC10943902 DOI: 10.1186/s12904-024-01405-7] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/20/2023] [Accepted: 03/05/2024] [Indexed: 03/18/2024] Open
Abstract
BACKGROUND Symptom assessment is key to effective symptom management and palliative care for patients with advanced cancer. Symptom prevalence and severity estimates vary widely, possibly dependent on the assessment tool used. Are symptoms specifically asked about or must the patients add them as additional symptoms? This study compared the prevalence and severity of patient-reported symptoms in two different versions of a multi-symptom assessment tool. In one version, three symptoms dry mouth, constipation, sleep problems were among those systematically assessed, while in the other, these symptoms had to be added as an "Other problem". METHODS This retrospective cross-sectional study included adult patients with advanced cancer at an inpatient palliative care unit. Data were collected from two versions of the Edmonton Symptom Assessment System (ESAS): modified (ESAS-m) listed 11 symptoms and revised (ESAS-r) listed 9 and allowed patients to add one "Other problem". Seven similar symptoms were listed in both versions. RESULTS In 2013, 184 patients completed ESAS-m, and in 2017, 156 completed ESAS-r. Prevalence and severity of symptoms listed in both versions did not differ. In ESAS-m, 83% reported dry mouth, 73% constipation, and 71% sleep problems, but on ESAS-r, these symptoms were reported by only 3%, 15% and < 1%, respectively. Although ESAS-r severity scores for these three symptoms were higher than on ESAS-m, differences did not reach statistical significance. CONCLUSION We identified significant differences in patient symptom reporting based on whether symptoms like dry mouth, obstipation and sleep problems were specifically assessed or had to be added by patients as an "Other problem".
Collapse
Affiliation(s)
- Ragnhild Elisabeth Monsen
- Department of Interdisciplinary Health Sciences, Institute of Health and Society, Faculty of Medicine, University of Oslo, Postboks 1089 Blindern, Oslo, 0317, Norway.
- Department of Medicine, Lovisenberg Diaconal Hospital, Oslo, Norway.
| | - Anners Lerdal
- Department of Interdisciplinary Health Sciences, Institute of Health and Society, Faculty of Medicine, University of Oslo, Postboks 1089 Blindern, Oslo, 0317, Norway
- Department of Research, Lovisenberg Diaconal Hospital, Oslo, Norway
| | - Hilde Nordgarden
- National Resource Centre for Oral Health in Rare Disorders, Lovisenberg Diaconal Hospital, Oslo, Norway
| | - Caryl L Gay
- Department of Research, Lovisenberg Diaconal Hospital, Oslo, Norway
- Department of Family Health Care Nursing, University of California, San Francisco, San Francisco, USA
| | - Bente Brokstad Herlofson
- Department of Oral Surgery and Oral Medicine, Faculty of Dentistry, University of Oslo, Oslo, Norway
- Unit of Oral and Maxillofacial Surgery, Department of Otorhinolaryngology - Head and Neck Surgery Division for Head, Neck and Reconstructive Surgery, Oslo University Hospital, Oslo, Norway
| |
Collapse
|
44
|
Dinh PC, Monahan PO, Fosså SD, Sesso HD, Feldman DR, Dolan ME, Nevel K, Kincaid J, Vaughn DJ, Martin NE, Sanchez VA, Einhorn LH, Frisina R, Fung C, Kroenke K, Travis LB. Impact of pain and adverse health outcomes on long-term US testicular cancer survivors. J Natl Cancer Inst 2024; 116:455-467. [PMID: 37966940 PMCID: PMC10919346 DOI: 10.1093/jnci/djad236] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/16/2023] [Revised: 10/20/2023] [Accepted: 11/07/2023] [Indexed: 11/17/2023] Open
Abstract
BACKGROUND No study has quantified the impact of pain and other adverse health outcomes on global physical and mental health in long-term US testicular cancer survivors or evaluated patient-reported functional impairment due to pain. METHODS Testicular cancer survivors given cisplatin-based chemotherapy completed validated surveys, including Patient-Reported Outcomes Measurement Information System v1.2 global physical and mental health, Patient-Reported Outcomes Measurement Information System pain questionnaires, and others. Multivariable linear regression examined relationships between 25 adverse health outcomes with global physical and mental health and pain-interference scores. Adverse health outcomes with a β^ of more than 2 are clinically important and reported below. RESULTS Among 358 testicular cancer survivors (median age = 46 years, interquartile range [IQR] = 38-53 years; median time since chemotherapy = 10.7 years, IQR = 7.2-16.0 years), median adverse health outcomes number was 5 (IQR = 3-7). A total of 12% testicular cancer survivors had 10 or more adverse health outcomes, and 19% reported chemotherapy-induced neuropathic pain. Increasing adverse health outcome numbers were associated with decreases in physical and mental health (P < .0001 each). In multivariable analyses, chemotherapy-induced neuropathic pain (β^ = -3.72; P = .001), diabetes (β^ = -4.41; P = .037), obesity (β^ = -2.01; P = .036), and fatigue (β^ = -8.58; P < .0001) were associated with worse global mental health, while being married or living as married benefited global mental health (β^ = 3.63; P = .0006). Risk factors for pain-related functional impairment included lower extremity location (β^ = 2.15; P = .04) and concomitant peripheral artery disease (β^ = 4.68; P < .001). Global physical health score reductions were associated with diabetes (β^ = -3.81; P = .012), balance or equilibrium problems (β^ = -3.82; P = .003), cognitive dysfunction (β^ = -4.43; P < .0001), obesity (β^ = -3.09; P < .0001), peripheral neuropathy score (β^ = -2.12; P < .0001), and depression (β^ = -3.17; P < .0001). CONCLUSIONS Testicular cancer survivors suffer adverse health outcomes that negatively impact long-term global mental health, global physical health, and pain-related functional status. Clinically important factors associated with worse physical and mental health identify testicular cancer survivors requiring closer monitoring, counseling, and interventions. Chemotherapy-induced neuropathic pain must be addressed, given its detrimental impact on patient-reported functional status and mental health 10 or more years after treatment.
Collapse
Affiliation(s)
- Paul C Dinh
- Division of Hematology/Oncology, Department of Medicine, Indiana University School of Medicine, Indianapolis, IN, USA
| | - Patrick O Monahan
- Department of Biostatistics and Health Data Science, Indiana University, Indianapolis, IN, USA
| | - Sophie D Fosså
- Department of Oncology, Oslo University Hospital, Radiumhospital, Oslo, Norway
| | - Howard D Sesso
- Division of Preventive Medicine, Department of Medicine Research, Brigham and Women’s Hospital, Boston, MA, USA
| | - Darren R Feldman
- Department of Medicine, Memorial Sloan Kettering Cancer Center, New York, NY, USA
- Department of Medicine, Weill Cornell Medical College, New York, NY, USA
| | - M Eileen Dolan
- Department of Medicine, University of Chicago, Chicago, IL, USA
| | - Kathryn Nevel
- Division of Hematology/Oncology, Department of Medicine, Indiana University School of Medicine, Indianapolis, IN, USA
- Department of Neurology, Indiana University, Indianapolis, IN, USA
| | - John Kincaid
- Department of Neurology, Indiana University, Indianapolis, IN, USA
| | - David J Vaughn
- Department of Medicine, University of Pennsylvania, Philadelphia, PA, USA
| | - Neil E Martin
- Department of Radiation Oncology, Brigham and Women’s Hospital, Boston, MA, USA
| | - Victoria A Sanchez
- Department of Medical Engineering, University of South Florida, Tampa, FL, USA
| | - Lawrence H Einhorn
- Division of Hematology/Oncology, Department of Medicine, Indiana University School of Medicine, Indianapolis, IN, USA
| | - Robert Frisina
- Department of Medical Engineering, University of South Florida, Tampa, FL, USA
| | - Chunkit Fung
- Department of Medicine, J.P. Wilmot Cancer Institute, University of Rochester Medical Center, Rochester, NY, USA
| | - Kurt Kroenke
- Regenstrief Institute, Inc, Indiana University, Indianapolis, IN, USA
| | - Lois B Travis
- Division of Hematology/Oncology, Department of Medicine, Indiana University School of Medicine, Indianapolis, IN, USA
| |
Collapse
|
45
|
Liu JB, Bates DW. Patient-reported outcome measures in emergency and acute care: looking beyond the emergency room. Clin Exp Emerg Med 2024; 11:1-5. [PMID: 38286497 PMCID: PMC11009703 DOI: 10.15441/ceem.23.172] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/02/2023] [Revised: 01/05/2024] [Accepted: 01/16/2024] [Indexed: 01/31/2024] Open
Affiliation(s)
- Jason B. Liu
- Patient-Reported Outcomes, Value, and Experience (PROVE) Center, Brigham and Women’s Hospital, Boston, MA, USA
- Division of Surgical Oncology, Department of Surgery, Brigham and Women’s Hospital, Boston, MA, USA
- Harvard Medical School, Boston, MA, USA
| | - David W. Bates
- Harvard Medical School, Boston, MA, USA
- Division of General Internal Medicine and Primary Care, Brigham and Women’s Hospital, Boston, MA, USA
- Clinical and Quality Analysis, Information Systems, Mass General Brigham, Boston, MA, USA
| |
Collapse
|
46
|
Klonizakis P, Roy N, Papatsouma I, Mainou M, Christodoulou I, Pantelidou D, Kokkota S, Diamantidis M, Kourakli A, Lazaris V, Andriopoulos D, Tsapas A, Klaassen RJ, Vlachaki E. A Cross-Sectional, Multicentric, Disease-Specific, Health-Related Quality of Life Study in Greek Transfusion Dependent Thalassemia Patients. Healthcare (Basel) 2024; 12:524. [PMID: 38470634 PMCID: PMC10931193 DOI: 10.3390/healthcare12050524] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/08/2023] [Revised: 02/16/2024] [Accepted: 02/20/2024] [Indexed: 03/14/2024] Open
Abstract
The assessment of health-related quality of life (HRQoL) in thalassemia offers a holistic approach to the disease and facilitates better communication between physicians and patients. This study aimed to evaluate the HRQoL of transfusion-dependent thalassemia (TDT) patients in Greece. This was a multicentric, cross-sectional study conducted in 2017 involving 283 adult TDT patients. All participants completed a set of two QoL questionnaires, the generic SF-36v2 and the disease-specific TranQol. Demographic and clinical characteristics were used to predefine patient subgroups. Significant factors identified in the univariate analysis were entered into a multivariate analysis to assess their effect on HRQoL. The SF-36 scores of TDT patients were consistently lower compared to the general population in Greece. The mean summary score of TranQol was relatively high (71 ± 14%), exceeding levels observed in national surveys in other countries. Employment emerged as the most significant independent factor associated with better HRQoL, whereas age had the most significant negative effect. This study represents the first comprehensive QoL assessment of a representative sample of the TDT population in Greece. The implementation of TranQol allowed for the quantification of HRQoL in Greece, establishing a baseline for future follow-up, and identifying more vulnerable patient subgroups.
Collapse
Affiliation(s)
- Philippos Klonizakis
- Adults Thalassemia Unit-2nd Department of Internal Medicine, Aristotle University, Hippokration General Hospital Thessaloniki, 54642 Thessaloniki, Greece; (M.M.); (I.C.); (E.V.)
| | - Noémi Roy
- Department of Haematology, Oxford University Hospitals, NHS Foundation Trust, Oxford OX3 0AG, UK;
| | - Ioanna Papatsouma
- Department of Mathematics, Imperial College London, London SW7 2BP, UK;
| | - Maria Mainou
- Adults Thalassemia Unit-2nd Department of Internal Medicine, Aristotle University, Hippokration General Hospital Thessaloniki, 54642 Thessaloniki, Greece; (M.M.); (I.C.); (E.V.)
| | - Ioanna Christodoulou
- Adults Thalassemia Unit-2nd Department of Internal Medicine, Aristotle University, Hippokration General Hospital Thessaloniki, 54642 Thessaloniki, Greece; (M.M.); (I.C.); (E.V.)
| | - Despina Pantelidou
- Thalassemia Unit, AHEPA General Hospital of Thessaloniki, 54636 Thessaloniki, Greece; (D.P.); (S.K.)
| | - Smaro Kokkota
- Thalassemia Unit, AHEPA General Hospital of Thessaloniki, 54636 Thessaloniki, Greece; (D.P.); (S.K.)
| | - Michael Diamantidis
- Thalassemia and Sickle Cell Disease Unit, General Hospital of Larissa, 41110 Larissa, Greece;
| | - Alexandra Kourakli
- Thalassemia and Hemoglobinopathies Center, University Hospital of Patras, 26504 Patras, Greece; (A.K.); (V.L.)
| | - Vasileios Lazaris
- Thalassemia and Hemoglobinopathies Center, University Hospital of Patras, 26504 Patras, Greece; (A.K.); (V.L.)
| | - Dimitrios Andriopoulos
- Haemato-Oncology Department, Royal Marsden Hospital NHS Foundation Trust, London SW3 6JJ, UK;
| | - Apostolos Tsapas
- 2nd Department of Internal Medicine, Aristotle University, Hippokration General Hospital of Thessaloniki, 54642 Thessaloniki, Greece
| | - Robert J. Klaassen
- Department of Pediatrics, Division of Hematology/Oncology, University of Ottawa, Children’s Hospital of Eastern Ontario, Ottawa, ON K1H 8L1, Canada;
| | - Efthymia Vlachaki
- Adults Thalassemia Unit-2nd Department of Internal Medicine, Aristotle University, Hippokration General Hospital Thessaloniki, 54642 Thessaloniki, Greece; (M.M.); (I.C.); (E.V.)
| |
Collapse
|
47
|
Shi Y, Pu S, Peng H, Luo Y. Development and validation of the patient-reported outcome scale for chronic kidney disease. Int Urol Nephrol 2024; 56:653-665. [PMID: 37452989 PMCID: PMC10808283 DOI: 10.1007/s11255-023-03702-1] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/05/2022] [Accepted: 07/03/2023] [Indexed: 07/18/2023]
Abstract
PURPOSE The patient-reported outcomes (PROs) measuring patient's experience and perception of disease are important components of approach to care. However, no tools are available to assess the PROs of chronic kidney disease (CKD). This study aims to develop and verify a PROs scale to evaluate clinical outcomes in CKD patients. METHODS The theoretical structure model and original item pool were formed through a literature review, patient interviews and references to relevant scales. The Delphi method, classical test theory methods and item response theory method were used to select items and adjust dimensions to form the final scale. Altogether 360 CKD patients were recruited through convenience sampling. CKD-PROs could be evaluated from four aspects, namely reliability, content validity, construct validity, responsibility, and feasibility. RESULTS The CKD-PROs scale covers 4 domains, including the physiological, psychological, social, and therapeutic domain, and 12 dimensions, 54 items. The Cronbach's α is 0.939, the split reliability coefficient is 0.945, and the correlation of the scores each item and domain's coefficients range from 0.413 to 0.669. The results of structure validity, content validity and reactivity showed that the multidimensional measurement of the scale met professional expectations. The recovery rate and effective rate of the scale were over 99%. CONCLUSION The CKD-PROs scale has great reliability, validity, reactivity, acceptability and is capable of being used as one of the evaluation tools for the clinical outcomes of CKD patients.
Collapse
Affiliation(s)
- Yu Shi
- School of Nursing, Army Medical University (Third Military Medical University), No. 30 Gaotanyan Street, Shapingba District, Chongqing, 400038, People's Republic of China
- Department of Nephrology, the Key Laboratory for the Prevention and Treatment of Chronic Kidney Disease of Chongqing, Chongqing Clinical Research Center of Kidney and Urology Diseases, Xinqiao Hospital, Army Medical University (Third Military Medical University), Chongqing, 400037, People's Republic of China
| | - Shi Pu
- School of Nursing, Army Medical University (Third Military Medical University), No. 30 Gaotanyan Street, Shapingba District, Chongqing, 400038, People's Republic of China
- Department of Nephrology, the Key Laboratory for the Prevention and Treatment of Chronic Kidney Disease of Chongqing, Chongqing Clinical Research Center of Kidney and Urology Diseases, Xinqiao Hospital, Army Medical University (Third Military Medical University), Chongqing, 400037, People's Republic of China
| | - Hongmei Peng
- School of Nursing, Army Medical University (Third Military Medical University), No. 30 Gaotanyan Street, Shapingba District, Chongqing, 400038, People's Republic of China
- Department of Nephrology, the Key Laboratory for the Prevention and Treatment of Chronic Kidney Disease of Chongqing, Chongqing Clinical Research Center of Kidney and Urology Diseases, Xinqiao Hospital, Army Medical University (Third Military Medical University), Chongqing, 400037, People's Republic of China
| | - Yu Luo
- School of Nursing, Army Medical University (Third Military Medical University), No. 30 Gaotanyan Street, Shapingba District, Chongqing, 400038, People's Republic of China.
| |
Collapse
|
48
|
Fenwick EK, Man REK, Lim B, Baskaran M, Nongpiur M, Sng CCA, Iyer JV, Husain R, Perera S, Wong T, Low JR, Huang OS, Lun K, Loe BS, Aung T, Lamoureux EL. Efficiency, Precision, Validity, and Reliability of GlauCAT-Asian Computerized Adaptive Tests in Measuring Glaucoma-Related Quality of Life. Transl Vis Sci Technol 2024; 13:6. [PMID: 38329749 PMCID: PMC10860685 DOI: 10.1167/tvst.13.2.6] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/09/2023] [Accepted: 12/17/2023] [Indexed: 02/09/2024] Open
Abstract
Purpose To determine the efficiency, precision, and agreement of GlauCAT-Asian and its corresponding validity and reliability. Methods In this cross-sectional study, 219 participants (mean ± standard deviation age, 66.59 ± 8.61 years; 34% female) across the spectrum of glaucoma severity and 50 glaucoma suspects were recruited from glaucoma clinics in Singapore. Participants answered seven computerized adaptive testing (CAT) evaluations (Ocular Comfort, Activity Limitation, Lighting, Mobility, Concerns, Psychosocial, Glaucoma Management) and underwent eye examinations. Efficiency (mean number of items required for each CAT and time taken for CAT versus full item banks [IBs]), agreement (concordance between CATs and full IB person measures, henceforth referred to as scores), and precision (standard error of measurement [SE]) were evaluated. Other validity and reliability metrics were also assessed. Results The mean number of items administered ranged from 9 (Mobility/Glaucoma Management) to 12 (Ocular Comfort). Compared to answering the full IBs, CATs provided an average time saving of 38.3% (range, 10% to 70.6% for Lighting and Activity Limitation, respectively). Agreement between scores obtained by CAT versus full IB was high (intracorrelation coefficient ≥0.75), as was precision of score estimates (mean SE range: 0.35 for Psychosocial to 0.29 for Mobility). Scores from Activity Limitation, Mobility, Lighting, and Concerns decreased significantly as glaucoma severity increased (criterion validity; P-trend <0.05). All tests displayed good convergent/divergent validity and test-retest reliability. Conclusions GlauCAT-Asian provides efficient, precise, accurate, valid, and reliable measurement of the patient-centered impact of glaucoma. Translational Relevance GlauCAT-Asian may provide a valuable clinical tool for ophthalmologists to monitor impact of disease progression and the effectiveness of therapies.
Collapse
Affiliation(s)
- Eva K. Fenwick
- Singapore Eye Research Institute, Singapore National Eye Centre, Singapore, Singapore
- Duke–NUS Medical School, National University of Singapore, Singapore, Singapore
| | - Ryan E. K. Man
- Singapore Eye Research Institute, Singapore National Eye Centre, Singapore, Singapore
- Duke–NUS Medical School, National University of Singapore, Singapore, Singapore
| | - Belicia Lim
- Singapore Eye Research Institute, Singapore National Eye Centre, Singapore, Singapore
| | - Mani Baskaran
- Singapore Eye Research Institute, Singapore National Eye Centre, Singapore, Singapore
- Medical and Vision Research Foundation, Sankara Nethralaya, Chennai, India
| | - Monisha Nongpiur
- Singapore Eye Research Institute, Singapore National Eye Centre, Singapore, Singapore
- Duke–NUS Medical School, National University of Singapore, Singapore, Singapore
| | - Chelvin C. A. Sng
- Singapore Eye Research Institute, Singapore National Eye Centre, Singapore, Singapore
- Department of Ophthalmology, National University of Singapore, Singapore, Singapore
- National University Health System, Singapore, Singapore
| | | | - Rahat Husain
- Singapore Eye Research Institute, Singapore National Eye Centre, Singapore, Singapore
| | - Shamira Perera
- Singapore Eye Research Institute, Singapore National Eye Centre, Singapore, Singapore
| | - Tina Wong
- Singapore Eye Research Institute, Singapore National Eye Centre, Singapore, Singapore
- Duke–NUS Medical School, National University of Singapore, Singapore, Singapore
| | - Jin Rong Low
- Singapore Eye Research Institute, Singapore National Eye Centre, Singapore, Singapore
| | - Olivia Shimin Huang
- Singapore Eye Research Institute, Singapore National Eye Centre, Singapore, Singapore
- Duke–NUS Medical School, National University of Singapore, Singapore, Singapore
| | - Katherine Lun
- National University Health System, Singapore, Singapore
| | - Bao Sheng Loe
- School of Psychology, University of Cambridge, Cambridge, UK
| | - Tin Aung
- Singapore Eye Research Institute, Singapore National Eye Centre, Singapore, Singapore
- Duke–NUS Medical School, National University of Singapore, Singapore, Singapore
- Department of Ophthalmology, National University of Singapore, Singapore, Singapore
| | - Ecosse L. Lamoureux
- Singapore Eye Research Institute, Singapore National Eye Centre, Singapore, Singapore
- Duke–NUS Medical School, National University of Singapore, Singapore, Singapore
- Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, Melbourne, Australia
| |
Collapse
|
49
|
Mott NM, Huynh V, Vemuru S, Parris HJ, Colborn K, Ahrendt G, Christian N, Kim S, Matlock DD, Cumbler E, Tevis SEA. Barriers and facilitators to measuring patient reported outcomes in an academic breast cancer clinic: An application of the RE-AIM framework. Am J Surg 2024; 228:180-184. [PMID: 37741803 PMCID: PMC11044988 DOI: 10.1016/j.amjsurg.2023.09.022] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/13/2023] [Revised: 08/14/2023] [Accepted: 09/13/2023] [Indexed: 09/25/2023]
Abstract
BACKGROUND Patient reported outcome measures (PROMs) are important for patient-centered, value-based care; however, implementation into surgical practice remains limited. We aimed to demonstrate feasibility of measuring PROMs in an academic breast cancer clinic. METHODS We conducted a pilot study implementing the patient-reported outcome measure BREAST-Q among patients with Stage 0-III breast cancer at a single institution from 06/2019-03/2023 using the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework. Barriers and facilitators were characterized. Survey completion was assessed pre-operatively and up to 12 months post-operatively. RESULTS Barriers included limited time and lack of incorporation into the electronic medical record. Facilitators included utilizing trained team members and an automated workflow. Among eligible patients, 74% completed BREAST-Q at 2-weeks post-operatively and 55% at 12 months post-operatively. CONCLUSIONS We describe the implementation of a PROM using the RE-AIM framework, highlighting facilitators and barriers that may assist others in collecting patient-reported outcome data.
Collapse
Affiliation(s)
- Nicole M Mott
- University of Colorado Anschutz Medical Campus, Department of Surgery, Aurora, CO, USA
| | - Victoria Huynh
- University of Colorado Anschutz Medical Campus, Department of Surgery, Aurora, CO, USA
| | - Sudheer Vemuru
- University of Colorado Anschutz Medical Campus, Department of Surgery, Aurora, CO, USA
| | - Hannah J Parris
- University of Colorado Anschutz Medical Campus, Department of Medicine, Aurora, CO, USA
| | - Kathryn Colborn
- University of Colorado Anschutz Medical Campus, Department of Surgery, Aurora, CO, USA; University of Colorado Cancer Center, Aurora, CO, USA
| | - Gretchen Ahrendt
- University of Colorado Anschutz Medical Campus, Department of Surgery, Aurora, CO, USA; University of Colorado Cancer Center, Aurora, CO, USA
| | - Nicole Christian
- University of Colorado Anschutz Medical Campus, Department of Surgery, Aurora, CO, USA; University of Colorado Cancer Center, Aurora, CO, USA
| | - Simon Kim
- University of Colorado Anschutz Medical Campus, Department of Surgery, Aurora, CO, USA
| | - Daniel D Matlock
- University of Colorado Anschutz Medical Campus, Department of Medicine, Aurora, CO, USA; VA Eastern Colorado Geriatric Research Education and Clinical Center, Denver, CO, USA
| | - Ethan Cumbler
- University of Colorado Anschutz Medical Campus, Department of Surgery, Aurora, CO, USA; University of Colorado Anschutz Medical Campus, Department of Medicine, Aurora, CO, USA
| | - Sarah E A Tevis
- University of Colorado Anschutz Medical Campus, Department of Surgery, Aurora, CO, USA; University of Colorado Cancer Center, Aurora, CO, USA.
| |
Collapse
|
50
|
Rosenberg T, Kirkegaard J, Tveden MG, Hyldig N, Dieperink KB, Steffensen NH, Ulriksen SB, Lund T. Making decisions for follow-up chemotherapy based on digital patient reported outcomes data in patients with multiple myeloma and other M protein diseases - A mixed method study. Eur J Oncol Nurs 2024; 68:102455. [PMID: 37984313 DOI: 10.1016/j.ejon.2023.102455] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/08/2023] [Revised: 10/19/2023] [Accepted: 10/27/2023] [Indexed: 11/22/2023]
Abstract
OBJECTIVES To test if Patient Reported Outcomes (PRO) data can replace physical on-site consultation in determining if patients with multiple myeloma, AL amyloidosis, or plasma cell leukemia are ready for their next bortezomib treatment without dose reduction. METHODS We developed an online questionnaire addressing common side effects to bortezomib and an algorithm stratifying patients according to their responses and asked them to complete the questionnaire the day before attending the clinic. Applying a mixed-method study design of PRO data, time registrations, and interviews with patients and healthcare professionals, we tested the usability of electronic PRO data forming the basis of decision-making on whether patients are physically fit for the next treatment with an unchanged dose. RESULTS The questionnaire and the associated algorithm were able to identify patients who were physically fit for treatment without need for further consultation, with a positive predictive value of 98 %. The method proved to be feasible for all groups of patients regardless of age and educational level. Patients and healthcare professionals found the online questionnaire to be advantageous and flexible. CONCLUSION The use of PRO data to evaluate patients prior to bortezomib treatment is safe and feasible. Patients prefer to report their side effects themselves as it provides them with more freedom during their treatment.
Collapse
Affiliation(s)
- Tine Rosenberg
- Department of Hematology, Odense University Hospital, Kloevervaenget 10, 12th Floor, 5000, Odense C, Denmark; Department of Clinical Research, University of Southern Denmark, J.B. Winsløws Vej 19.3, DK-5000, Odense C, Denmark.
| | - Jannie Kirkegaard
- Department of Hematology, Odense University Hospital, Kloevervaenget 10, 12th Floor, 5000, Odense C, Denmark
| | - Michael Gundesen Tveden
- Department of Hematology, Odense University Hospital, Kloevervaenget 10, 12th Floor, 5000, Odense C, Denmark; Department of Clinical Research, University of Southern Denmark, J.B. Winsløws Vej 19.3, DK-5000, Odense C, Denmark
| | - Nana Hyldig
- Department of Hematology, Odense University Hospital, Kloevervaenget 10, 12th Floor, 5000, Odense C, Denmark; Research Unit of Oncology, The Academy of Geriatric Cancer Research (www.agecare.org) Odense University Hospital, Sdr. Boulevard 29, 5000, Odense C, Denmark
| | - Karin Brochstedt Dieperink
- Research Unit of Oncology, The Academy of Geriatric Cancer Research (www.agecare.org) Odense University Hospital, Sdr. Boulevard 29, 5000, Odense C, Denmark; Department of Clinical Research, University of Southern Denmark, J.B. Winsløws Vej 19.3, DK-5000, Odense C, Denmark
| | - Nanna Hanneberg Steffensen
- Department of Hematology, Odense University Hospital, Kloevervaenget 10, 12th Floor, 5000, Odense C, Denmark
| | - Stine Brøgger Ulriksen
- Department of Hematology, Odense University Hospital, Kloevervaenget 10, 12th Floor, 5000, Odense C, Denmark
| | - Thomas Lund
- Department of Hematology, Odense University Hospital, Kloevervaenget 10, 12th Floor, 5000, Odense C, Denmark; Department of Clinical Research, University of Southern Denmark, J.B. Winsløws Vej 19.3, DK-5000, Odense C, Denmark
| |
Collapse
|