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Castelli G, Cocconcelli E, Grimaudo G, Di Leo I, Bellani S, Fiorentù G, Giulianelli G, Bernardinello N, Balestro E, Spagnolo P. Interstitial Lung Diseases and Lung Cancer: A Review on Similarities, Common Pathogenesis and Therapeutic Approach. J Pers Med 2025; 15:213. [PMID: 40423084 DOI: 10.3390/jpm15050213] [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: 03/17/2025] [Revised: 05/12/2025] [Accepted: 05/20/2025] [Indexed: 05/28/2025] Open
Abstract
Interstitial lung disease (ILD) prevalence and survival are increasing due to improvement in scientific research together with clinical complications typical of advanced disease. Lung cancer (LC) is described as a possible event occurring in lung parenchyma in the context of fibrotic abnormalities that worsen patients' prognosis. This growth of malignant cells on a fibrotic background has also been called scar-cinoma. For this reason, not only an early diagnosis but also personalized decisions on the best treatment approach should be considered for each patient in a multidisciplinary discussion, since in some cases chemotherapy or surgery could be detrimental for patients with pulmonary fibrosis. LC and lung fibrosis may share common pathogenetic mechanisms like an altered healing process in response to repeated tissue damage from environmental exposure in genetically susceptible individuals. Smoking history and air pollution together with mutations in telomere and surfactant protein genes lead to the production of cytokines and nitro derivatives in the microenvironment that facilitate the carcinomatous transformation during fibrogenesis. The evolution of LC therapy and the implementation of immunotherapy acting on targetable immune checkpoints have raised interest in evaluating ILD-LC actionable mutations. The main pathogenetic mechanisms, clinical presentations and treatment implications are presented in this review.
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Affiliation(s)
- Gioele Castelli
- Respiratory Disease Unit, Department of Cardiac, Thoracic, Vascular Sciences and Public Health, University of Padova and Padova City Hospital, 35128 Padua, Italy
| | - Elisabetta Cocconcelli
- Respiratory Disease Unit, Department of Cardiac, Thoracic, Vascular Sciences and Public Health, University of Padova and Padova City Hospital, 35128 Padua, Italy
| | - Giuliana Grimaudo
- Respiratory Disease Unit, Department of Cardiac, Thoracic, Vascular Sciences and Public Health, University of Padova and Padova City Hospital, 35128 Padua, Italy
| | - Irene Di Leo
- Division of Respiratory Medicine, Department PROMISE, "Paolo Giaccone" University Hospital, University of Palermo, 90133 Palermo, Italy
| | - Serena Bellani
- Respiratory Disease Unit, Department of Cardiac, Thoracic, Vascular Sciences and Public Health, University of Padova and Padova City Hospital, 35128 Padua, Italy
| | - Giordano Fiorentù
- Respiratory Disease Unit, Department of Cardiac, Thoracic, Vascular Sciences and Public Health, University of Padova and Padova City Hospital, 35128 Padua, Italy
| | - Giacomo Giulianelli
- Respiratory Disease Unit, Department of Cardiac, Thoracic, Vascular Sciences and Public Health, University of Padova and Padova City Hospital, 35128 Padua, Italy
| | - Nicol Bernardinello
- Respiratory Disease Unit, Department of Cardiac, Thoracic, Vascular Sciences and Public Health, University of Padova and Padova City Hospital, 35128 Padua, Italy
| | - Elisabetta Balestro
- Respiratory Disease Unit, Department of Cardiac, Thoracic, Vascular Sciences and Public Health, University of Padova and Padova City Hospital, 35128 Padua, Italy
| | - Paolo Spagnolo
- Respiratory Disease Unit, Department of Cardiac, Thoracic, Vascular Sciences and Public Health, University of Padova and Padova City Hospital, 35128 Padua, Italy
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Parajuli J, Chen ZJ, Smith RM, Hernandez LM, Norris S, Rutledge S, Williams G, Bakitas M, Hsiang S. Development and initial validation of a palliative care readiness (PALCARE) tool for older adults with cancer: Study protocol. PLoS One 2025; 20:e0323366. [PMID: 40397967 DOI: 10.1371/journal.pone.0323366] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/31/2025] [Accepted: 04/04/2025] [Indexed: 05/23/2025] Open
Abstract
INTRODUCTION Early palliative care (PC) has been recommended for older adults with cancer to address their cancer and treatment related high symptom burden and unmet needs. However, it is underutilized; older adults with cancer are 60% less likely to use PC compared to their younger counterparts. One approach to reduce existing barriers and improve utilization is to assess their readiness for PC. However, there are no gold-standard tools to measure older adults with cancer PC readiness. METHODS Informed by the 8 domains of PC recommended by National Consensus Project guidelines, Readiness to Change Framework, and principles of community engaged research, we will use a mixed methods approach, to develop and validate a Palliative Care Readiness (PALCARE) Tool through the following steps: 1) Identify items using semi-structured interviews with 20 diverse (race/ethnicity, rural/urban residence, cancer types) older adults with cancer; 2) Develop draft tool via expert panel surveys followed by focus group with PC experts, and 3) Determine item clarity and wording via cognitive interviews with 20 dyads of older adults with cancer and their family caregivers. DISCUSSION/CONCLUSION The PALCARE tool will be one of the first measures of PC readiness among a diverse sample of older adults with cancer. Once validated, PALCARE can enhance clinical practice by identifying those who are/are not ready for PC, providing targeted PC that is congruent with their readiness, and educating and supporting those who report being not yet ready for PC. The ultimate goal of this study is to improve PC early access and older adults' quality of life.
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Affiliation(s)
- Jyotsana Parajuli
- University of North Carolina at Charlotte, Charlotte, North Carolina, United States of America
| | - Zhuo Job Chen
- University of North Carolina at Charlotte, Charlotte, North Carolina, United States of America
| | - Regine M Smith
- University of North Carolina at Charlotte, Charlotte, North Carolina, United States of America
| | - Liliana M Hernandez
- University of North Carolina at Charlotte, Charlotte, North Carolina, United States of America
| | - Savannah Norris
- University of North Carolina at Charlotte, Charlotte, North Carolina, United States of America
| | - Sarah Rutledge
- Atrium Health, Charlotte, North Carolina, United States of America
| | - Grant Williams
- University of Alabama at Birmingham, Birmingham, Alabama, United States of America
| | - Marie Bakitas
- University of Alabama at Birmingham, Birmingham, Alabama, United States of America
| | - Simon Hsiang
- Atrium Health, Charlotte, North Carolina, United States of America
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King S, Sinnarajah A, Ahmed S, Paolucci A, Shirt L, Slobogian V, Vig C, Hao D, Barbera LC, Kurien EC, Santana MJ, Pabani A, Biondo PD, Simon JE. Patient-Rated Acceptability of Automatic Palliative Care Referral: A Prospective Cohort Study. J Pain Symptom Manage 2025; 69:465-472. [PMID: 39914578 DOI: 10.1016/j.jpainsymman.2025.01.021] [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: 12/23/2024] [Revised: 01/27/2025] [Accepted: 01/30/2025] [Indexed: 02/17/2025]
Abstract
CONTEXT Timely palliative care can alleviate distress after diagnosis of an incurable cancer. However, late referrals to palliative care continue, reflecting various provider and patient barriers. OBJECTIVES To determine patient/caregiver-reported acceptability of a phone call offering a supportive and palliative care (SPC) consultation without requiring oncologist referral. METHODS Two SPC nurses screened out-patient clinic lists at a tertiary cancer center weekly and called all eligible patients to offer an SPC consultation. Eligibility: >18 years, newly diagnosed/suspected stage IV nonsmall cell lung cancer, and completed first oncologist visit. Patients/caregivers were surveyed about the acceptability of the phone call offering SPC consultation, using Sekhon's Framework of Acceptability domains. RESULTS Among 113 patients screened, 81 patients/caregivers were contacted and offered an SPC consultation; 72% accepted the consultation. Of 48 patients/caregivers surveyed, 94% rated overall acceptability of the call somewhat/completely acceptable; 6% rated it neither acceptable nor unacceptable. Within specific acceptability domains, 95% were comfortable receiving the call; 92% understood why they received the call; 87% found the call valuable; 70% found the call helpful; 66% learned about SPC from the call; no one expressed concern that the SPC nurse had access to their contact/health information; 97% thought the call required little physical/emotional effort and were confident in their ability to participate (i.e., to ask questions/make decisions). CONCLUSION These unsolicited phone calls offering SPC consultation were highly acceptable to patients/caregivers, and most agreed to the consultation. Implementing routine calls offering SPC consultation may be a timely alternative to awaiting conventional oncologist referral.
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Affiliation(s)
- Seema King
- Department of Community Health Sciences (S.K., S.A., A.P., M.J.S., and J.E.S.), Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada
| | - Aynharan Sinnarajah
- Department of Oncology (A.S., D.H., L.C.B., E.C.K., P.D.B., and J.E.S.), Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada; Department of Medicine (A.S.), Queen's University, Kingston, Ontario, Canada
| | - Sadia Ahmed
- Department of Community Health Sciences (S.K., S.A., A.P., M.J.S., and J.E.S.), Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada
| | - Alessandra Paolucci
- Department of Community Health Sciences (S.K., S.A., A.P., M.J.S., and J.E.S.), Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada
| | - Lisa Shirt
- Palliative and End of Life Care (L.S., V.S., and C.V.), Alberta Health Services, Calgary, Alberta, Canada
| | - Vanessa Slobogian
- Palliative and End of Life Care (L.S., V.S., and C.V.), Alberta Health Services, Calgary, Alberta, Canada
| | - Chandra Vig
- Palliative and End of Life Care (L.S., V.S., and C.V.), Alberta Health Services, Calgary, Alberta, Canada
| | - Desiree Hao
- Department of Oncology (A.S., D.H., L.C.B., E.C.K., P.D.B., and J.E.S.), Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada; Tom Baker Cancer Centre (D.H., L.C.B., E.C.K., and A.P.), Calgary, Alberta, Canada
| | - Lisa C Barbera
- Department of Oncology (A.S., D.H., L.C.B., E.C.K., P.D.B., and J.E.S.), Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada; Tom Baker Cancer Centre (D.H., L.C.B., E.C.K., and A.P.), Calgary, Alberta, Canada
| | - Elizabeth C Kurien
- Department of Oncology (A.S., D.H., L.C.B., E.C.K., P.D.B., and J.E.S.), Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada; Tom Baker Cancer Centre (D.H., L.C.B., E.C.K., and A.P.), Calgary, Alberta, Canada
| | - Maria J Santana
- Department of Community Health Sciences (S.K., S.A., A.P., M.J.S., and J.E.S.), Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada
| | - Aliyah Pabani
- Department of Oncology (A.S., D.H., L.C.B., E.C.K., P.D.B., and J.E.S.), Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada; Tom Baker Cancer Centre (D.H., L.C.B., E.C.K., and A.P.), Calgary, Alberta, Canada
| | - Patricia D Biondo
- Department of Oncology (A.S., D.H., L.C.B., E.C.K., P.D.B., and J.E.S.), Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada
| | - Jessica E Simon
- Department of Community Health Sciences (S.K., S.A., A.P., M.J.S., and J.E.S.), Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada; Department of Oncology (A.S., D.H., L.C.B., E.C.K., P.D.B., and J.E.S.), Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada.
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Hoesseini A, Dronkers EAC, Dieleman E, De Herdt MJ, Wieringa MH, van Velthuysen MLF, Offerman MPJ, Sewnaik A, Monserez D, Keereweer S, Hardillo JAU, de Jong RJB. Rotterdam Oncology Documentation (RONCDOC) - a high-quality data warehouse and tissue collection for head and neck cancer. BMC Cancer 2025; 25:778. [PMID: 40281465 PMCID: PMC12032767 DOI: 10.1186/s12885-025-14100-4] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/02/2024] [Accepted: 04/07/2025] [Indexed: 04/29/2025] Open
Abstract
BACKGROUND Every year, almost 900.000 people are diagnosed with head and neck cancer (HNC) worldwide. HNC contains many different subsites and a large variability in tumor biology. This often results in small and/or heterogeneous study populations. Developing overarching databases is an efficient solution to collect and analyze data of these smaller subsets of patients and to facilitate data sharing among research groups. The few existing large databases often include only basic characteristics. In addition, hospital-based cohorts that include more variables are often not collected consecutively, resulting in selection bias. Therefore, we established a hospital-based cancer registry system "Rotterdam Oncology Documentation" (RONCDOC), a complete and consecutive data warehouse and tissue collection for HNC, directly registered at the source. The primary aim of this paper is to report on our data collection protocol in order to make the RONCDOC data accessible and reusable for other researchers, and to offer a blue print to other consortia planning to establish their own data warehouse. METHODS Data collected in the Netherlands Cancer Registry (NCR) of patients with HNC were obtained from the Netherlands comprehensive cancer organization (IKNL) and merged with corresponding data from the electronic patient file (EPF). The data were manually verified using the EPF, and enriched with additional variables from the EPF according to an extensive data entry protocol. Furthermore, a comprehensive validation protocol was developed to guarantee the quality of the data. Tissue microarrays (TMAs) were constructed from resection specimens of patients with primary oral squamous cell carcinoma. CONCLUSION With RONCDOC, we have established a consecutive and high-quality data warehouse for HNC. This paper outlines the essential steps for establishing such a data warehouse, offering a blueprint for other consortia. TRIAL REGISTRATION This study was approved by the ethics committee of the Erasmus Medical Center (MEC-2016-751).
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Affiliation(s)
- Arta Hoesseini
- Department of Otorhinolaryngology and Head and Neck Surgery, Erasmus MC Cancer Institute, Erasmus University Medical Center, Dr. Molewaterplein 40, Rotterdam, 3015 GD, The Netherlands.
| | - Emilie A C Dronkers
- Department of Otorhinolaryngology and Head and Neck Surgery, Erasmus MC Cancer Institute, Erasmus University Medical Center, Dr. Molewaterplein 40, Rotterdam, 3015 GD, The Netherlands
- Department of Otorhinolaryngology and Head and Neck Surgery, Leiden University Medical Centre, Leiden, The Netherlands
| | - Eveline Dieleman
- Department of Otorhinolaryngology and Head and Neck Surgery, Erasmus MC Cancer Institute, Erasmus University Medical Center, Dr. Molewaterplein 40, Rotterdam, 3015 GD, The Netherlands
| | - Maria J De Herdt
- Department of Pathology, Erasmus MC, Erasmus University Medical Center, Rotterdam, The Netherlands
| | - Marjan H Wieringa
- Department of Education and Research, Elisabeth TweeSteden Hospital (ETZ), Tilburg, The Netherlands
| | | | - Marinella P J Offerman
- Department of Otorhinolaryngology and Head and Neck Surgery, Erasmus MC Cancer Institute, Erasmus University Medical Center, Dr. Molewaterplein 40, Rotterdam, 3015 GD, The Netherlands
| | - Aniel Sewnaik
- Department of Otorhinolaryngology and Head and Neck Surgery, Erasmus MC Cancer Institute, Erasmus University Medical Center, Dr. Molewaterplein 40, Rotterdam, 3015 GD, The Netherlands
| | - Dominiek Monserez
- Department of Otorhinolaryngology and Head and Neck Surgery, Erasmus MC Cancer Institute, Erasmus University Medical Center, Dr. Molewaterplein 40, Rotterdam, 3015 GD, The Netherlands
| | - Stijn Keereweer
- Department of Otorhinolaryngology and Head and Neck Surgery, Erasmus MC Cancer Institute, Erasmus University Medical Center, Dr. Molewaterplein 40, Rotterdam, 3015 GD, The Netherlands
| | - Jose A U Hardillo
- Department of Otorhinolaryngology and Head and Neck Surgery, Erasmus MC Cancer Institute, Erasmus University Medical Center, Dr. Molewaterplein 40, Rotterdam, 3015 GD, The Netherlands
| | - Robert Jan Baatenburg de Jong
- Department of Otorhinolaryngology and Head and Neck Surgery, Erasmus MC Cancer Institute, Erasmus University Medical Center, Dr. Molewaterplein 40, Rotterdam, 3015 GD, The Netherlands
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Wong R, D'Mello B, Mah K, Miljanovski M, Li A, Shapiro G, Rydall A, Zimmermann C, Hannon B, Rodin G. Prognostic beliefs in patients with cancer receiving outpatient palliative care. Support Care Cancer 2025; 33:377. [PMID: 40220047 DOI: 10.1007/s00520-025-09404-x] [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: 11/24/2024] [Accepted: 03/24/2025] [Indexed: 04/14/2025]
Abstract
PURPOSE Prognostic awareness refers to a patient's knowledge of their prognosis. Since this term implies that there is a knowable truth about survival, we propose utilizing the more neutral construct of "prognostic beliefs." We aimed to assess prognostic beliefs of patients with cancer receiving palliative care and their relationship to: i) recall of physician-communicated prognosis, ii) physical/psychological well-being, and iii) actual survival. METHODS Participants were recruited in the outpatient palliative care clinic of a comprehensive cancer center in Toronto, Canada. Eligibility criteria were: ≥ 18 years, English-speaking, diagnosed with cancer, and receiving palliative care. Group comparisons of well-being were conducted using independent samples t-tests. RESULTS 188 participants completed physical and psychosocial well-being questionnaires and the Prognostic Beliefs Questionnaire. 167/188 participants (88.8%) recalled discussing treatability/curability and 81 (43.1%) recalled discussing expected survival with their physician. Among 147 participants who rated treatability/curability, 129 (87.8%) had prognostic beliefs concordant with their recall of physician communication, none had worse prognostic beliefs than their oncologist, and 18 (12.2%) had better prognostic beliefs. Of 77 participants who rated expected survival, 58 (75.3%) had concordant prognostic beliefs, 1 (1.3%) had worse beliefs, and 18 (23.4%) had better beliefs. Among 66 participants who died, 45 (68.2%) were realistic regarding survival time, 12 (18.2%) had more pessimistic beliefs, and 9 (13.6%) had more optimistic beliefs. CONCLUSION Patients with cancer receiving palliative care tend to have realistic prognostic beliefs about the treatability and curability of their disease and their expected survival, without adverse effects of this knowledge on their well-being.
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Affiliation(s)
- Rebecca Wong
- Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, 620 University Ave., 12th Floor, Toronto, ON, M5G 2C1, Canada.
- Faculty of Health Sciences, Western University, London, ON, Canada.
| | - Brooke D'Mello
- Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, 620 University Ave., 12th Floor, Toronto, ON, M5G 2C1, Canada
- Temerty Faculty of Medicine, University of Toronto, Toronto, ON, Canada
| | - Kenneth Mah
- Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, 620 University Ave., 12th Floor, Toronto, ON, M5G 2C1, Canada
| | - Melissa Miljanovski
- Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, 620 University Ave., 12th Floor, Toronto, ON, M5G 2C1, Canada
- Department of Psychology, University of Windsor, Windsor, ON, Canada
| | - Athena Li
- Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, 620 University Ave., 12th Floor, Toronto, ON, M5G 2C1, Canada
- Faculty of Health Sciences, McMaster University, Hamilton, ON, Canada
| | - Gilla Shapiro
- Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, 620 University Ave., 12th Floor, Toronto, ON, M5G 2C1, Canada
| | - Anne Rydall
- Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, 620 University Ave., 12th Floor, Toronto, ON, M5G 2C1, Canada
| | - Camilla Zimmermann
- Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, 620 University Ave., 12th Floor, Toronto, ON, M5G 2C1, Canada
- Division of Palliative Medicine, Department of Medicine, University of Toronto, Toronto, ON, Canada
- Department of Psychiatry, University of Toronto, Toronto, ON, Canada
- Global Institute of Psychosocial, Palliative and End-of-Life Care, University of Toronto and Princess Margaret Cancer Centre, University Health Network, Toronto, ON, Canada
| | - Breffni Hannon
- Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, 620 University Ave., 12th Floor, Toronto, ON, M5G 2C1, Canada
- Division of Palliative Medicine, Department of Medicine, University of Toronto, Toronto, ON, Canada
| | - Gary Rodin
- Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, 620 University Ave., 12th Floor, Toronto, ON, M5G 2C1, Canada.
- Department of Psychiatry, University of Toronto, Toronto, ON, Canada.
- Global Institute of Psychosocial, Palliative and End-of-Life Care, University of Toronto and Princess Margaret Cancer Centre, University Health Network, Toronto, ON, Canada.
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Durieux BN, Zverev SR, Agaronnik ND, Davis J, Pollak KI, Tulsky JA, Tarbi E, Lindvall C. Physician-dominated conversations: An analysis of illness understanding discussions among patients with advanced cancer. PATIENT EDUCATION AND COUNSELING 2025; 133:108633. [PMID: 39793420 DOI: 10.1016/j.pec.2024.108633] [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: 09/18/2024] [Revised: 12/30/2024] [Accepted: 12/31/2024] [Indexed: 01/13/2025]
Abstract
CONTEXT Effective communication between patients and oncologists is crucial, particularly around illness understanding. When this communication is asymmetric or imbalanced, it can hinder shared decision-making and lead to suboptimal clinical outcomes. OBJECTIVES We sought to describe physician-patient speech imbalances ("asymmetry") in illness understanding portions of discussions between oncologists and advanced cancer patients and explore potential trends related to patient characteristics. METHODS Our study included 285 audio recordings of outpatient encounters between 40 oncologists and 139 patients with advanced cancer. We identified illness understanding communication via manual data annotation and analyzed clinician-patient speech ratios. For this project, a communication outcome of "asymmetry" was defined as taking place when one party spoke more than 60 % of all spoken characters related to illness understanding in the conversation. We used descriptive statistics to report frequency of asymmetric conversations by patient characteristics. We then examined whether certain patient characteristics were associated with presence of at least one asymmetric illness understanding discussion as a categorical variable. RESULTS At the conversation level, 77 % of all illness understanding discussions were asymmetric and clinician-dominated. At the patient level, 89 % experienced asymmetric illness understanding communication. We found that non-Hispanic white patients experienced a lower rate of asymmetry across their conversations compared to patients from other racial and ethnic backgrounds (73 % of conversations vs. 82 %). CONCLUSIONS Asymmetric, clinician-dominated communication was prevalent in illness understanding discussions. PRACTICE IMPLICATIONS Communication balances may be a relevant factor driving disparities in cancer care. Strategies are needed to address communication imbalances in serious illness conversations and enhance communication education.
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Affiliation(s)
| | - Samuel R Zverev
- Dana-Farber Cancer Institute, Boston, MA, USA; New York University Long Island School of Medicine, New York, NY, USA
| | - Nicole D Agaronnik
- Dana-Farber Cancer Institute, Boston, MA, USA; Harvard Medical School, Boston, MA, USA
| | - Joshua Davis
- Dana-Farber Cancer Institute, Boston, MA, USA; Albany Medical College, Albany, NY, USA
| | - Kathryn I Pollak
- Duke University School of Medicine, Duke University, Durham, NC, USA; Cancer Prevention and Control Program, Duke Cancer Institute, Duke University, Durham, NC, USA
| | - James A Tulsky
- Dana-Farber Cancer Institute, Boston, MA, USA; Harvard Medical School, Boston, MA, USA; Brigham and Women's Hospital, Boston, MA, USA
| | - Elise Tarbi
- Dana-Farber Cancer Institute, Boston, MA, USA; University of Vermont, Burlington, VT, USA
| | - Charlotta Lindvall
- Dana-Farber Cancer Institute, Boston, MA, USA; Harvard Medical School, Boston, MA, USA; Brigham and Women's Hospital, Boston, MA, USA.
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Maiga AW, Ho V, Morris RS, Kodadek LM, Puzio TJ, Tominaga GT, Tabata-Kelly M, Cooper Z. Palliative care in acute care surgery: research challenges and opportunities. Trauma Surg Acute Care Open 2025; 10:e001615. [PMID: 40124208 PMCID: PMC11927415 DOI: 10.1136/tsaco-2024-001615] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/26/2024] [Accepted: 02/08/2025] [Indexed: 03/25/2025] Open
Abstract
Palliative care includes effective communication, relief of suffering and symptom management with an underlying goal of improving the quality of life for patients with serious illness and their families. Best practice palliative care is delivered in parallel with life-sustaining or life-prolonging care. Palliative care affirms life and regards death as a normal process, intends neither to hasten death nor to postpone death and includes but is not limited to end-of-life care. Palliative care encompasses both primary palliative care (which can and should be incorporated into the practice of acute care surgery) and specialty palliative care (consultation with a fellowship-trained palliative care provider). Acute care surgeons routinely care for individuals who may benefit from palliative care. Patients exposed to traumatic injury, emergency surgical conditions, major burns and/or critical surgical illness are more likely to be experiencing a serious illness than other hospitalized patients. Palliative care research is urgently needed in acute care surgery. At present, minimal high-quality research is available to guide selection of palliative care interventions. This narrative review summarizes the current state of research challenges and opportunities to address palliative care in acute care surgery. Palliative care research in acute care surgery can rely on either primary data collection or secondary and administrative data. Each approach has its advantages and limitations, which we will review in this article.
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Affiliation(s)
- Amelia W Maiga
- Division of Acute Care Surgery, Department of Surgery, Vanderbilt University Medical Center, Nashville, Tennessee, USA
| | - Vanessa Ho
- Division of Trauma, Critical Care, Emergency General Surgery, and Burns, Department of Surgery, MetroHealth, Cleveland, Ohio, USA
| | | | - Lisa M Kodadek
- Division of General Surgery, Trauma and Surgical Critical Care, Department of Surgery, Yale School of Medicine, New Haven, Connecticut, USA
| | - Thaddeus J Puzio
- University of Texas Health Science Center at Houston, Houston, Texas, USA
| | - Gail T Tominaga
- Scripps Memorial Hospital La Jolla, La Jolla, California, USA
| | - Masami Tabata-Kelly
- Center for Surgery and Public Health, Brigham and Women’s Hospital, Boston, Massachusetts, USA
| | - Zara Cooper
- Center for Surgery and Public Health, Brigham and Women’s Hospital, Boston, Massachusetts, USA
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Tarbi EC, Schuler SL, Ambrose N, Hutchinson RN, Reblin M, Cheung KL. Telehealth for the study of palliative care communication: opportunities, methodological challenges, and recommendations. BMC Palliat Care 2025; 24:55. [PMID: 40033257 PMCID: PMC11874772 DOI: 10.1186/s12904-025-01700-x] [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: 11/04/2024] [Accepted: 02/20/2025] [Indexed: 03/05/2025] Open
Abstract
BACKGROUND While telehealth may offer promise for accessible, efficient palliative care delivery, leveraging telehealth technologies as an opportunity to better understand and advance the science of palliative care communication has been less well explored. Without identifying solutions to overcome challenges to conducting research in the virtual environment, we are unable to conduct the foundational work to offer evidence-based recommendations for high-quality telehealth, particularly in the context of palliative care. Our objective is to highlight methodological challenges in the use of telehealth for the study of palliative care communication and share lessons learned from using these methods. METHODS This paper is the result of a reflective process and experience across three ongoing observational communication research studies focused on the use of telehealth during serious illness. These research datasets have been collected from multiple sites and represent rural and urban telehealth palliative care consultations for patients receiving dialysis (n = 34), patients with cancer (n = 13), and seriously ill, home-bound patients (n = 9). We illustrate challenges, insights, and recommendations with case studies from these studies. RESULTS We identify key challenges, and offer recommendations to address them, in telehealth palliative care communication research. Key insights fall within three themes: 1) addressing accessibility barriers to enrollment in telehealth research; 2) technical considerations regarding how software and hardware choices have implications for data collection and analysis; and 3) ethical considerations regarding the nuances of consent and privacy in telehealth encounters. CONCLUSIONS Overall, our approach demonstrates possibilities for the use of telehealth to study palliative care communication and provides a "how-to" example for unique telehealth considerations from data collection through analysis. These strategies can facilitate success with large-scale health communication research studies in the telehealth context.
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Affiliation(s)
- Elise C Tarbi
- Department of Nursing, University of Vermont, 106 Carrigan Drive, Burlington, VT, 05405, USA.
- Department of Family Medicine, Vermont Conversation Lab, University of Vermont, Burlington, VT, USA.
| | - Susanna L Schuler
- Larner College of Medicine, University of Vermont, Burlington, VT, USA
| | - Natalie Ambrose
- Department of Nursing, University of Vermont, 106 Carrigan Drive, Burlington, VT, 05405, USA
| | - Rebecca N Hutchinson
- Center for Interdisciplinary Population and Health Research, Mainehealth Institute for Research, Westbrook, ME, USA
| | - Maija Reblin
- Department of Family Medicine, Vermont Conversation Lab, University of Vermont, Burlington, VT, USA
| | - Katharine L Cheung
- Department of Family Medicine, Vermont Conversation Lab, University of Vermont, Burlington, VT, USA
- Department of Medicine, Division of Nephrology, Larner College of Medicine, University of Vermont, Burlington, VT, USA
- Center on Aging, Larner College of Medicine, University of Vermont, Burlington, VT, USA
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9
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Luciani F, Veneziani G, Giraldi E, Campedelli V, Galli F, Lai C. To be aware or not to be aware of the prognosis in the terminal stage of cancer? A systematic review of the associations between prognostic awareness with anxiety, depression, and quality of life according to cancer stage. Clin Psychol Rev 2025; 116:102544. [PMID: 39809049 DOI: 10.1016/j.cpr.2025.102544] [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: 10/09/2024] [Accepted: 01/07/2025] [Indexed: 01/16/2025]
Abstract
Prognostic awareness (PA) has an important role in promoting informed care planning in cancer patients. However, studies in the literature showed discordant results regarding the impact of PA on psychological and quality of life outcomes. The present systematic review aimed to investigate the associations between PA with anxiety, depression, and quality of life in oncological patients according to early, advanced, and terminal cancer stages. The review adhered to PRISMA guidelines and was registered on PROSPERO. The research identified 42.357 studies, of which 54 were included. The main result showed that the associations of PA with anxiety, depression, and quality of life varied according to the cancer stage. In studies with early and advanced cancer patients, 0 % and 9 %, respectively, showed favourable associations, while in those with terminal cancer patients, 53 % showed favourable associations. In terminal stage cancer, the associations were favourable when patients were enrolled in hospice, had a mean survival time shorter than 60 days, and a mean age older than 65 years. These findings suggest that it could be important within psychological interventions for patients to consider the impact of PA at different stages of cancer. While in the early and advanced stages of cancer, patients might benefit most from interventions focused on implementing psychological resources to face the illness and maintaining a hopeful outlook, in the terminal stage of cancer, it could be important to promote the process of becoming aware of their prognosis.
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Affiliation(s)
- Federica Luciani
- Department of Dynamic and Clinical Psychology, and Health Studies, Sapienza University of Rome, 00185 Rome, Italy
| | - Giorgio Veneziani
- Department of Dynamic and Clinical Psychology, and Health Studies, Sapienza University of Rome, 00185 Rome, Italy
| | - Emanuele Giraldi
- Department of Dynamic and Clinical Psychology, and Health Studies, Sapienza University of Rome, 00185 Rome, Italy
| | - Virginia Campedelli
- Department of Dynamic and Clinical Psychology, and Health Studies, Sapienza University of Rome, 00185 Rome, Italy
| | - Federica Galli
- Department of Dynamic and Clinical Psychology, and Health Studies, Sapienza University of Rome, 00185 Rome, Italy
| | - Carlo Lai
- Department of Dynamic and Clinical Psychology, and Health Studies, Sapienza University of Rome, 00185 Rome, Italy.
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10
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Osborne TF, Veigulis ZP, Ware A, Arreola DM, Curtin C, Yeung M. Automated Electronic Health Record Score to Predict Mortality Risk at the US Department of Veterans Affairs. Am J Hosp Palliat Care 2025; 42:230-235. [PMID: 38627935 DOI: 10.1177/10499091241247841] [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] [Indexed: 02/05/2025] Open
Abstract
BACKGROUND Terminally ill patients benefit from earlier engagement in palliative care. However, this does not always occur. This project assessed if an already available risk score, the Care Assessment Needs (CAN) score, would be able to identify patients at greatest risk for mortality within 30 days of hospital admission within the Veterans Health Administration (VHA). METHODS The cohort of this retrospective analysis included all VA acute are patients over 18 years of age with a recent CAN score. The CAN score is an automatically calculated VA risk score that was repurposed to determine if it could predict risk of mortality after acute care admission. Univariate logistic regression was performed to obtain the probability of mortality within 30 days of admission, based on their CAN score. RESULTS 298,467 patient records were assessed from January 1, 2019, to December 31, 2019. There was 6% mortality after 30 days of admissions, and 17% mortality within 1-year post-admission. Mean CAN score was 65 (SD: 29). On average, each incremental increase in the CAN score increased the probability of mortality by 7%. Patients with a CAN score of 90 had a 10% probability of 30-day post-admission mortality. CONCLUSION A readily available risk score, automatically calculated from EHR data, was able to identify patients at high risk for 30-day mortality in the acute care setting. Next steps will be to assess how the CAN score can be utilized to in improve end of life care for high-risk hospitalized Veterans.
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Affiliation(s)
- Thomas F Osborne
- US Department of Veterans Affairs, Palo Alto Healthcare System, Palo Alto, CA, USA
- Department of Radiology, Stanford University School of Medicine, Stanford, CA, USA
| | - Zachary P Veigulis
- US Department of Veterans Affairs, Palo Alto Healthcare System, Palo Alto, CA, USA
| | - Anna Ware
- US Department of Veterans Affairs, Palo Alto Healthcare System, Palo Alto, CA, USA
| | - David M Arreola
- US Department of Veterans Affairs, Palo Alto Healthcare System, Palo Alto, CA, USA
| | - Catherine Curtin
- US Department of Veterans Affairs, Palo Alto Healthcare System, Palo Alto, CA, USA
- Department of Surgery, Stanford University School of Medicine, Stanford, CA, USA
| | - Marianne Yeung
- US Department of Veterans Affairs, Palo Alto Healthcare System, Palo Alto, CA, USA
- Department of Medicine, Stanford University School of Medicine, Stanford, CA, USA
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11
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Heuser N, Heers H, Gschnell M, Urhahn F, Schrade S, Volberg C. Do We Have a Knowledge Gap with Our Patients?-On the Problems of Knowledge Transfer and the Implications at the End of Life. INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH 2025; 22:247. [PMID: 40003472 PMCID: PMC11855585 DOI: 10.3390/ijerph22020247] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Subscribe] [Scholar Register] [Received: 01/02/2025] [Revised: 01/21/2025] [Accepted: 02/08/2025] [Indexed: 02/27/2025]
Abstract
BACKGROUND Cancer patients are often unaware of their exact diagnosis, stage of disease, and prognosis. This affects their treatment, quality of life, and end-of-life decisions. In this study, patients with skin and urological cancers were asked about their level of knowledge about their disease and its treatment in order to highlight this problem and describe possible effects on end-of-life decisions. METHODS 150 patients with advanced skin cancer and 88 patients with advanced urological cancer were interviewed using a structured questionnaire at a German university hospital. Descriptive and statistical analysis of the data were performed. The significance level was set at alpha ≤ 0.05. RESULTS 67% of skin cancer patients could not state their exact stage. Of these, younger patients (<60 y) were more likely to state their stage correctly (p = 0.017). All of those patients knew about their therapy. A total of 56 patients had distant and 143 had local metastasis. The majority was aware of that (84%, 78%). Also, 95% of the urological cancer patients stated that they knew their stage of disease, but not a single patient could tell it correctly. All urological patients knew about the presence of metastasis. A total of 30% of urological cancer patients were unaware of their tumor therapy, and one patient stated that he did not receive any treatment, even though he did. The majority of patients could not correctly name their exact therapy. CONCLUSIONS In the patients observed, it was found that many of them were unaware of their stage of disease, which can have a huge impact on their end-of-life decisions, such as the type of treatment they want. Many patients were also unaware of their own treatment. There is a risk that false hopes of cure may be attached to therapies and that, as a result, patients may be less likely to opt for palliative care with a focus on maintaining quality of life.
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Affiliation(s)
- Nils Heuser
- Department of Anaesthesiology and Intensive Care Medicine, Philipps University of Marburg, 35043 Marburg, Germany
| | - Hendrik Heers
- Department of Urology and Paediatric Urology, University Hospital RWTH Aachen, 52074 Aachen, Germany
- Department of Urology, Philipps University of Marburg, 35043 Marburg, Germany
| | - Martin Gschnell
- Department of Dermatology und Allergology, Philipps University of Marburg, 35043 Marburg, Germany
| | - Fabian Urhahn
- Department of Urology, Landesklinikum Mistelbach-Gänserndorf, 2130 Mistelbach, Austria
| | - Severin Schrade
- Department of Cardiology, Kreisklinik Ebersberg, 85560 Ebersberg, Germany
| | - Christian Volberg
- Department of Anaesthesiology and Intensive Care Medicine, Philipps University of Marburg, 35043 Marburg, Germany
- Research Group Medical Ethics, Faculty of Medicine, Philipps University of Marburg, 35043 Marburg, Germany
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Kodadek LM, Cook M, Young J, Cottrell-Cumber S, Farrell MS, Jawa R, Kirsch JM, Nohra EA, Haruta A, Lueckel S, Maerz LL, Toevs CC, Sanchez SE, Kaups KL, Pathak A, Zonies D, Cuschieri J, Stein DM, Cooper Z, American Association for the Surgery of Trauma Critical Care Committee. Primary palliative care in acute care surgery: an American Association for the Surgery of Trauma Critical Care Committee and Palliative Care Committee clinical consensus document. Trauma Surg Acute Care Open 2025; 10:e001616. [PMID: 40395463 PMCID: PMC12090898 DOI: 10.1136/tsaco-2024-001616] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/27/2024] [Accepted: 11/27/2024] [Indexed: 05/22/2025] Open
Affiliation(s)
| | - Mackenzie Cook
- Oregon Health & Science University, Portland, Oregon, USA
| | - Jason Young
- University of Utah Health, Salt Lake City, Utah, USA
| | | | | | - Randeep Jawa
- Stony Brook University, Stony Brook, New York, USA
| | | | - Eden A Nohra
- University of Colorado Anschutz Medical Campus, Aurora, Colorado, USA
| | | | | | - Linda L Maerz
- Yale School of Medicine, New Haven, Connecticut, USA
| | | | | | - Krista L Kaups
- Department of Surgery, UCSF Fresno, Fresno, California, USA
| | | | - David Zonies
- Oregon Health & Science University, Portland, Oregon, USA
| | - Joseph Cuschieri
- University of California San Francisco, San Francisco, California, USA
| | | | - Zara Cooper
- Harvard University, Cambridge, Massachusetts, USA
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13
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Tu A, de la Rosa A, Krause K, Brown JH, Hui D. Assessment Tools to Examine Illness Understanding in Patients with Advanced Cancer: A Systematic Review of Randomized Clinical Trials. Cancers (Basel) 2025; 17:385. [PMID: 39941754 PMCID: PMC11816152 DOI: 10.3390/cancers17030385] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/03/2024] [Revised: 01/10/2025] [Accepted: 01/20/2025] [Indexed: 02/16/2025] Open
Abstract
The best tools to assess patient illness understanding are unclear. Here, we examined the assessment tools for illness understanding administered in randomized clinical trials (RCTs) involving patients with advanced cancer, how accuracy of illness understanding was assessed, and each tool's level of accuracy. We conducted a systematic review of Ovid MEDLINE, Ovid EMBASE, and Web of Science from database inception to 28 February 2024. We included all RCTs that reported on illness understanding assessments in cancer patients. The assessment measures were classified into five categories: prognostic awareness, health status, curability, treatment intent, and treatment risks/benefits. We extracted the questions, answers, definitions of accuracy, and accuracy rates of each category. The final sample included 27 articles based on 16 RCTs; five articles (19%) had a Jadad score of ≥3. Among these articles, 10 (37%) assessed prognostic awareness, 4 (15%) assessed health status, 9 (33%) assessed curability, 11 (41%) assessed treatment intent, and 3 (11%) assessed treatment risks/benefits. Only four RCTs examined illness understanding as a primary outcome or communication intervention. We observed significant heterogeneity in the questions, answers, definition of accuracy, and accuracy rate of patients' responses for all themes except for health status. The accuracy rate ranged from 6% to 33% for prognostic awareness, 45% to 59% for health status, 35% to 84% for curability, 26% to 88% for treatment intent, and 17% to 75% for treatment risks/benefits. This study highlights significant variation in current illness understanding assessments and opportunities for standardization to support clinical practice and research.
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Affiliation(s)
- Ashlyn Tu
- Department of Palliative, Rehabilitation and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX 77030, USA;
| | - Allison de la Rosa
- Center for Goal Concordant Care Research, The University of Texas MD Anderson Cancer Center, Houston, TX 77030, USA; (A.d.l.R.); (J.H.B.)
| | - Kate Krause
- Biomedical Library, The University of Texas MD Anderson Cancer Center, Houston, TX 77030, USA;
| | - Jessica H. Brown
- Center for Goal Concordant Care Research, The University of Texas MD Anderson Cancer Center, Houston, TX 77030, USA; (A.d.l.R.); (J.H.B.)
| | - David Hui
- Department of Palliative, Rehabilitation and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX 77030, USA;
- Center for Goal Concordant Care Research, The University of Texas MD Anderson Cancer Center, Houston, TX 77030, USA; (A.d.l.R.); (J.H.B.)
- Department of General Oncology, The University of Texas MD Anderson Cancer Center, Houston, TX 77030, USA
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14
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van den Besselaar BN, Sewnaik A, Dorr MC, Hoesseini A, Hardillo JA, Baatenburg de Jong RJ, Offerman MPJ. A study protocol for individualized prognostic counselling in the palliative phase. BMC Palliat Care 2025; 24:9. [PMID: 39794711 PMCID: PMC11720302 DOI: 10.1186/s12904-025-01647-z] [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: 11/21/2024] [Accepted: 01/06/2025] [Indexed: 01/13/2025] Open
Abstract
BACKGROUND Head and neck squamous cell cancer (HNSCC) has a poor prognosis, with approximately 25-30% of patients transitioning into the palliative phase at some point. The length of this phase is relatively short, with a median duration of five months. Patients in this stage often have increased prognostic information needs. Unfortunately, predicting individual life expectancy in this phase is particularly challenging, as physicians and patients tend to overestimate survival. To address this issue, we developed the prognostic model OncologIQ Palliative based on user preferences. In this study, we now aim to assess the clinical impact of utilizing this model during counselling. METHODS This study will employ both quantitative and qualitative approaches. The primary outcome is decisional conflict and satisfaction with the decision-making process after counselling without (cohort 1) and with (cohort 2) OncologIQ Palliative. Therefore, a prospective sequential cohort study will be conducted. Secondary outcomes include the amount of palliative treatment, overall survival rates, and quality of life. These measurements will be collected after the intervention. Additionally, patients' perspectives on the decision-making process and proactive care planning, including end-of-life discussions, will be explored through interviews. DISCUSSION By offering more personalized prognostic information for HNSCC patients in the palliative phase, we anticipate a shift towards more patient-centred counselling. This approach can facilitate enhanced end-of-life discussions and better proactive care planning. Patients may experience reduced decisional conflict, feel better prepared for what's coming, and find assistance in their decision-making process. This could potentially lead to fewer palliative treatments. Overall, these aspects can contribute to a better quality of life and quality of care for HNSCC patients in the last phase of their lives. TRIAL REGISTRATION This study was registered November 18, 2024, on ClinicalTrials.gov: NCT06699316.
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Affiliation(s)
- Boyd Noël van den Besselaar
- Department of Otorhinolaryngology and Head and Neck Surgery, Erasmus MC Cancer Institute, University Medical Centre Rotterdam, Dr. Molewaterplein 40, Rotterdam, 3015 GD, The Netherlands.
| | - A Sewnaik
- Department of Otorhinolaryngology and Head and Neck Surgery, Erasmus MC Cancer Institute, University Medical Centre Rotterdam, Dr. Molewaterplein 40, Rotterdam, 3015 GD, The Netherlands
| | - M C Dorr
- Department of Otorhinolaryngology and Head and Neck Surgery, Erasmus MC Cancer Institute, University Medical Centre Rotterdam, Dr. Molewaterplein 40, Rotterdam, 3015 GD, The Netherlands
| | - A Hoesseini
- Department of Otorhinolaryngology and Head and Neck Surgery, Erasmus MC Cancer Institute, University Medical Centre Rotterdam, Dr. Molewaterplein 40, Rotterdam, 3015 GD, The Netherlands
| | - J A Hardillo
- Department of Otorhinolaryngology and Head and Neck Surgery, Erasmus MC Cancer Institute, University Medical Centre Rotterdam, Dr. Molewaterplein 40, Rotterdam, 3015 GD, The Netherlands
| | - R J Baatenburg de Jong
- Department of Otorhinolaryngology and Head and Neck Surgery, Erasmus MC Cancer Institute, University Medical Centre Rotterdam, Dr. Molewaterplein 40, Rotterdam, 3015 GD, The Netherlands
| | - M P J Offerman
- Department of Otorhinolaryngology and Head and Neck Surgery, Erasmus MC Cancer Institute, University Medical Centre Rotterdam, Dr. Molewaterplein 40, Rotterdam, 3015 GD, The Netherlands
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Cruz RP, Serafim JA, Klug D, Santos CED. Palliative care in the public health system: how do physicians deal with their patients at the end of life? Int J Palliat Nurs 2025; 31:6-16. [PMID: 39853184 DOI: 10.12968/ijpn.2025.31.1.6] [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] [Indexed: 01/26/2025]
Abstract
BACKGROUND Patients with cancer are referred late to palliative care services (PCS). AIM To analyse the time of referral to PCSs and the characteristics of patients that are referred. METHODS A retrospective cohort. All patients admitted in a single tertiary care institution were evaluated by the PCSs from February 1, 2018 to January 31, 2019. FINDINGS Among the 642 patients (557 patients with cancer) referred to PCSs: 7.47% died before evaluation, 13.08% died before transfer, and 15.6% died within 8 days after transfer. Out of all the patients with cancer included in the study, 85.28% had less than 2 months of PCS follow-up during their disease. In the last 30 days of life, 96.26% had were readmitted to hospital. A total of 94.09% of patients with cancer died in a hospital. CONCLUSION These findings suggest that patients with cancer in Brazil are not referred early enough to PCSs. Early integration with PCS must be sought to improve the accuracy of referral.
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Affiliation(s)
| | - José Américo Serafim
- Department of Monitoring, Evaluation and Dissemination of Strategic Health Data and Information, Brazil
| | - Daniel Klug
- Teaching and Research Management, Hospital Nossa Senhora da Conceição. Av. Francisco Trein, Brazil
- PhD
| | - Cledy Eliana Dos Santos
- Teaching and Research Management, Hospital Nossa Senhora da Conceição. Av. Francisco Trein, Brazil
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16
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Fabbro M, Thomaso M, Darlix A, Perotin V, Gallay C, Charissoux M, Granier AC, Bouazza N, Champoiral P, Coutant L, Jarlier M, Guerdoux E. Integrated early palliative care for patients with newly diagnosed glioblastoma: The GLIOSUPPORT feasibility study. Neurooncol Adv 2025; 7:vdaf064. [PMID: 40351836 PMCID: PMC12063082 DOI: 10.1093/noajnl/vdaf064] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 05/14/2025] Open
Abstract
Background Early palliative care improves the quality of life (QoL) and survival in patients with cancer; however, its effects in patients with glioblastoma remain unclear. The GLIOSUPPORT study assessed the feasibility (adherence; primary objective) of an early palliative care program integrated into the standard glioblastoma care pathway. Secondary objectives included the description of the patients' characteristics, QoL, and neuropsychological changes over time, end-of-life decisions, end-of-life treatments, and family carers' perceptions/experiences. Methods This interventional, prospective, longitudinal, feasibility study was conducted in a French comprehensive cancer center. Thirty-five patients with newly diagnosed glioblastoma were required to reach an adherence rate of 60%. Adherence was defined as going to 3 palliative care visits scheduled every 12 weeks. Baseline characteristics were compared in patients who did and did not adhere to the palliative care program. Minimal clinically important differences and cut-offs were used to quantify QoL changes. Results The adherence rate was 60% (95% CI [42.1%-76.1%]), indicating that the program was feasible. Visual disturbances, communication/initiation deficits, and anxiety were more frequent in the group that did not adhere to the program. Emotional and social functioning, pain, appetite loss, constipation, and headache increased over time (clinically significant differences), whereas neuropsychological disturbances did not change. Half of the participants identified a family proxy and 8.6% wrote advance directives. One month before death, 28.6% of patients were receiving cancer treatment. Conclusions Integrating early palliative care in glioblastoma management is feasible. The potential benefits on QoL, mood, and survival must now be evaluated in a larger randomized controlled trial.
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Affiliation(s)
- Michel Fabbro
- Department of Medical Oncology, Montpellier Cancer Institute, University of Montpellier, Montpellier, France
| | - Muriel Thomaso
- Palliative and Supportive Care Department, Montpellier Cancer Institute, University of Montpellier, Montpellier, France
| | - Amélie Darlix
- Institute of Functional Genomics, University of Montpellier, CNRS, INSERM, Montpellier, France
- Department of Medical Oncology, Montpellier Cancer Institute, University of Montpellier, Montpellier, France
| | - Virginie Perotin
- Palliative and Supportive Care Department, Montpellier Cancer Institute, University of Montpellier, Montpellier, France
| | - Caroline Gallay
- Palliative and Supportive Care Department, Montpellier Cancer Institute, University of Montpellier, Montpellier, France
| | - Marie Charissoux
- Department of Oncological Radiotherapy, University of Montpellier, Montpellier, France
| | - Anne-Chantal Granier
- Palliative and Supportive Care Department, Montpellier Cancer Institute, University of Montpellier, Montpellier, France
| | - Nabila Bouazza
- Clinical Research and Innovation Department, Montpellier Cancer Institute, University of Montpellier, Montpellier, France
| | - Patrice Champoiral
- Palliative and Supportive Care Department, Montpellier Cancer Institute, University of Montpellier, Montpellier, France
| | - Louise Coutant
- Palliative and Supportive Care Department, Montpellier Cancer Institute, University of Montpellier, Montpellier, France
| | - Marta Jarlier
- Biometrics Unit, Montpellier Cancer Institute, University of Montpellier, Montpellier, France
| | - Estelle Guerdoux
- Institute Desbrest of Epidemiology and Public Health, INSERM UMR 1318, University Montpellier, Montpellier, France
- Palliative and Supportive Care Department, Montpellier Cancer Institute, University of Montpellier, Montpellier, France
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17
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Caspers AM, Eichenauer DA, Pralong A, Simon ST. Hospital Palliative Care Team Involvement in Inpatients with Hematologic Malignancies: A Retrospective Study. J Palliat Med 2025; 28:26-34. [PMID: 39344793 DOI: 10.1089/jpm.2024.0265] [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] [Indexed: 10/01/2024] Open
Abstract
Background: Data on the involvement of hospital palliative care teams (HPCT) in the management of patients with hematologic malignancies (HM) are limited. Objectives: To describe characteristics, symptom burden according to the German Hospice and Palliative Care Evaluation assessment tool, and course of inpatients with HM who were referred to a HPCT, and compare them with their counterparts with solid tumors (ST). Design: Retrospective analysis. Setting/Subjects: Inpatients with HM and ST who were referred to the HPCT of a comprehensive cancer center in Germany between January 1, 2015, and December 31, 2019. Results: The analysis included 2885 patients; 412 (14.3%) had HM and 2473 (85.7%) had ST. Patients with HM more often experienced depression (p = 0.003), tension (p < 0.001), and disorientation (p = 0.003); pain (p = 0.029), nausea (p = 0.003), weakness (p < 0.001), loss of appetite (p = 0.005), tiredness (p < 0.001), and need for assistance with activities of daily living (p < 0.001) were more common in patients with ST. Patients with HM were more often admitted to the intensive care unit (ICU) (p < 0.001), had longer ICU stays (p = 0.005), and had a higher death rate (p < 0.001) during their last stay in the hospital. The time between the first contact with the HPCT and death was shorter for patients with HM (p < 0.001). Patients with HM also had a shorter overall time of care by the HPCT (p < 0.001). Conclusions: As compared with their counterparts with ST, inpatients with HM were closer to death at referral to the HPCT, experienced a comparable overall symptom burden, and were admitted to the ICU more frequently after HPCT involvement.
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Affiliation(s)
- Anja M Caspers
- Department of Palliative Medicine, University Hospital Cologne, Germany and Centre for Integrated Oncology Aachen Bonn Cologne Düsseldorf (CIO), University Hospital Cologne, Cologne, Germany
| | - Dennis A Eichenauer
- First Department of Internal Medicine, University Hospital Cologne, Germany and Centre for Integrated Oncology Aachen Bonn Cologne Düsseldorf (CIO), University Hospital Cologne, Cologne, Germany
| | - Anne Pralong
- Department of Palliative Medicine, University Hospital Cologne, Germany and Centre for Integrated Oncology Aachen Bonn Cologne Düsseldorf (CIO), University Hospital Cologne, Cologne, Germany
| | - Steffen T Simon
- Department of Palliative Medicine, University Hospital Cologne, Germany and Centre for Integrated Oncology Aachen Bonn Cologne Düsseldorf (CIO), University Hospital Cologne, Cologne, Germany
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18
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Walker AM, Sullivan DR, Nguyen P, Holland AE, Smallwood N. Early, integrated palliative care for people with chronic respiratory disease: lessons learnt from lung cancer. Ther Adv Respir Dis 2025; 19:17534666241305497. [PMID: 39921545 PMCID: PMC11807281 DOI: 10.1177/17534666241305497] [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: 07/15/2024] [Accepted: 11/07/2024] [Indexed: 02/10/2025] Open
Abstract
Lung cancer and chronic non-malignant respiratory disease cause pervasive, multifactorial suffering for patients and informal carers alike. Palliative care aims to reduce suffering and improve quality of life for patients and their families. An established evidence base exists that has demonstrated the essential role of specialist palliative care for people with lung cancer. Emerging evidence supports similar benefits among people with chronic respiratory disease. Many lessons can be learnt from lung cancer care, particularly as the model of care delivery has transformed over recent decades due to major advances in the diagnostic pathway and the development of new treatments. This narrative review aims to summarize the evidence for specialist palliative care in lung cancer and chronic respiratory disease, by highlighting seven key lessons from lung cancer care that can inform the development of proactive, integrated models of palliative care among those with chronic respiratory disease. These seven lessons emphasize (1) managing challenging symptoms; (2) the efficacy of specialist palliative care; (3) the importance of providing specialist palliative care integrated with disease-directed care according to patients' needs not prognosis; (4) the need for new models of collaborative palliative care, (5) which are culturally appropriate and (6) able to evolve with changes in disease-directed care. Finally, we discuss (7) some of the critical research gaps that persist and reduce implementation in practice.
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Affiliation(s)
- Anne M. Walker
- Heart and Lung, Central Adelaide Local Health Network, SA 5000, Australia
- Respiratory Research @ Alfred, School of Translational Medicine, Monash University, Melbourne, VIC, Australia
- Faculty of Health and Medical Sciences, Adelaide Medical School, University of Adelaide, Adelaide, SA, Australia
| | - Donald R. Sullivan
- Oregon Health and Science University, Division of Pulmonary, Allergy and Critical Care Medicine, Portland, OR, USA
- VA Portland Health Care System, Centre to Improve Veteran Involvement in Care, Portland, OR, USA
| | - Phan Nguyen
- Heart and Lung, Central Adelaide Local Health Network, Adelaide, SA, Australia
- Faculty of Health and Medical Sciences, Adelaide Medical School, University of Adelaide, Adelaide, SA, Australia
| | - Anne E. Holland
- Respiratory Research @ Alfred, School of Translational Medicine, Monash University, Melbourne, VIC, Australia
- Department of Respiratory & Sleep Medicine, Alfred Health, Melbourne, VIC, Australia
| | - Natasha Smallwood
- Respiratory Research @ Alfred, School of Translational Medicine, Monash University, Melbourne, VIC, Australia
- Department of Respiratory & Sleep Medicine, Alfred Health, Melbourne, VIC, Australia
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Slominska A, Loban K, Kinsella EA, Ho J, Sandal S. Supportive care in transplantation: A patient-centered care model to better support kidney transplant candidates and recipients. World J Transplant 2024; 14:97474. [PMID: 39697448 PMCID: PMC11438939 DOI: 10.5500/wjt.v14.i4.97474] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/31/2024] [Revised: 07/31/2024] [Accepted: 08/06/2024] [Indexed: 09/20/2024] Open
Abstract
Kidney transplantation (KT), although the best treatment option for eligible patients, entails maintaining and adhering to a life-long treatment regimen of medications, lifestyle changes, self-care, and appointments. Many patients experience uncertain outcome trajectories increasing their vulnerability and symptom burden and generating complex care needs. Even when transplants are successful, for some patients the adjustment to life post-transplant can be challenging and psychological difficulties, economic challenges and social isolation have been reported. About 50% of patients lose their transplant within 10 years and must return to dialysis or pursue another transplant or conservative care. This paper documents the complicated journey patients undertake before and after KT and outlines some initiatives aimed at improving patient-centered care in transplantation. A more cohesive approach to care that borrows its philosophical approach from the established field of supportive oncology may improve patient experiences and outcomes. We propose the "supportive care in transplantation" care model to operationalize a patient-centered approach in transplantation. This model can build on other ongoing initiatives of other scholars and researchers and can help advance patient-centered care through the entire care continuum of kidney transplant recipients and candidates. Multi-dimensionality, multi-disciplinarity and evidence-based approaches are proposed as other key tenets of this care model. We conclude by proposing the potential advantages of this approach to patients and healthcare systems.
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Affiliation(s)
- Anita Slominska
- MEDIC Program, Research Institute of the McGill University Health Centre, Montreal H4A3J1, QC, Canada
| | - Katya Loban
- MEDIC Program, Research Institute of the McGill University Health Centre, Montreal H4A3J1, QC, Canada
| | - Elizabeth Anne Kinsella
- Institute of Health Sciences Education, Faculty of Medicine and Health Sciences, McGill University, Montreal H4A3J1, QC, Canada
| | - Julie Ho
- Department of Medicine, University of Manitoba, Winnipeg R3A1R9, MB, Canada
| | - Shaifali Sandal
- Department of Medicine, McGill University Health Centre, Montreal H4A3J1, QC, Canada
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Akagi H, Katsumata N, Suzuki K, Masukawa K, Morita T, Kizawa Y, Tsuneto S, Shima Y, Miyashita M. Unapproved and unproven cancer treatments in patients admitted to palliative care units. Support Care Cancer 2024; 32:841. [PMID: 39621134 DOI: 10.1007/s00520-024-09057-2] [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: 06/09/2024] [Accepted: 11/28/2024] [Indexed: 01/06/2025]
Abstract
PURPOSE To clarify the current use of unapproved and unproven cancer treatment (UUCT) among the bereaved families of patients with cancer who died in palliative care units, the financial burden and psychological experiences of the families, and the relationship between patients in palliative care who used UUCT and communication with their physicians'. METHODS This study was conducted as part of a cross-sectional, anonymous nationwide survey of the bereaved family members of cancer patients who died in palliative care unit in Japan. RESULTS Questionnaires were sent to 1,039 bereaved family members, and responses were received from 661 (64%). Of these, 558 were included in the study after excluding the 103 who did not complete the questionnaire. A total of 7.3% (41 of 558) of patients received UUCT. Of these, 34% (14 of 41) of patients were informed that the treatment was in the research phase, and 49% (20 of 41) were informed that the efficacy of the treatment was unknown. Regarding expectations for UUCT, 61% (25/41) expected to be cured, and 80% (33/41) expected it to slow disease progression. In multivariate logistic regression analysis, use of complementary and alternative medicine (CAM) was associated with receiving UUCT (p = 0.024), and patients who could discuss CAM with their doctors tended to receive UUCT (p = 0.054). CONCLUSION Patients in palliative care unit who expect to cure tended to receive UUCT. These results highlight the challenge of telling patients that UUCT is ineffective and informing them of their prognosis and severe medical conditions.
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Affiliation(s)
- Hideko Akagi
- Department of Medical Oncology, Nippon Medical School Musashi-Kosugi Hospital, 1-396 Kosugi-Cho, Nakahara-Ku, Kawasaki-Shi, Kanagawa, 211-8533, Japan.
| | - Noriyuki Katsumata
- Department of Medical Oncology, Nippon Medical School Musashi-Kosugi Hospital, 1-396 Kosugi-Cho, Nakahara-Ku, Kawasaki-Shi, Kanagawa, 211-8533, Japan
| | - Kozue Suzuki
- Department of Palliative Care, Tokyo Metropolitan Cancer and Infectious Diseases Center Komagome Hospital, Tokyo, Japan
| | - Kento Masukawa
- Department of Palliative Nursing, Health Sciences, Tohoku University Graduate School of Medicine, Sendai, Japan
| | - Tatsuya Morita
- Department of Palliative and Supportive Care Division, Seirei Mikatahara General Hospital, Hamamatsu, Japan
| | - Yoshiyuki Kizawa
- Department of Palliative and Supportive Care, Faculty of Medicine, University of Tsukuba, Tsukuba, Japan
| | - Satoru Tsuneto
- Department of Palliative Medicine, Palliative Care Center, Graduate School of Medicine, Kyoto University, Kyoto, Japan
| | - Yasuo Shima
- Department of Palliative Medicine, Tsukuba Medical Center Hospital, Tsukuba, Japan
| | - Mitsunori Miyashita
- Department of Palliative Nursing, Health Sciences, Tohoku University Graduate School of Medicine, Sendai, Japan
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21
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Cloyd JM, Khatri R, Sarna A, Stevens L, Heh V, Dillhoff M, Kim A, Pawlik TM, Ejaz A, Wells-Di Gregorio S, Scott E, Kale SS. Early Palliative Care Following Aborted Cancer Surgery: Results of a Prospective Feasibility Trial. ANNALS OF SURGERY OPEN 2024; 5:e520. [PMID: 39711683 PMCID: PMC11661761 DOI: 10.1097/as9.0000000000000520] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/09/2024] [Accepted: 10/18/2024] [Indexed: 12/24/2024] Open
Abstract
Background Although resection is generally necessary for curative-intent treatment of most solid organ cancers, surgery is occasionally aborted due to intraoperative findings. Following aborted cancer surgery, patients have unique care needs that specialized palliative care (PC) providers may be best equipped to manage. We hypothesized that early ambulatory PC referral following aborted cancer surgery would be feasible and acceptable. Methods This single-institution prospective clinical trial enrolled adult patients with gastrointestinal or hepatopancreatobiliary cancer with no prior PC exposure who had curative-intent oncologic surgery that was unexpectedly aborted. The primary endpoint was the completion of an ambulatory PC consultation within 30 days of enrollment. Secondary outcomes included changes in standardized measures of quality-of-life (QOL) and anxiety/depression during the 3-month follow-up. Results Among 25 enrolled participants, the mean age was 65.3 ± 9.9 years, 68% were male, and 88% were White. The most common types of cancers were pancreatic (44%), hepatobiliary (20%), and colorectal (12%); reasons for aborting surgery were occult metastatic disease (52%) and local unresectability (36%). Only 13 of 25 (52%) met the primary endpoint of ambulatory PC within 30 days, less than the prespecified threshold of 70%. Overall, 16 (64%) patients completed ambulatory PC consultation a mean of 29.2 ± 15.8 days after enrollment. Of the 9 (36%) who did not, reasons included patient preference (n = 4), withdrawal from study (n = 1), lost to follow-up (n = 1), scheduling conflict (n = 1), and required inpatient PC before discharge (n = 2). Anxiety (4.94 ± 3.56 vs 3.35 ± 2.60, P = 0.06), depression (4.18 ± 4.02 vs 4.76 ± 3.44, P = 0.49), and QOL (82.44 ± 11.41 vs 82.03 ± 15.37, P = 0.92) scores did not significantly differ at 3-month follow-up compared to baseline. Conclusions Barriers to early ambulatory palliative care consultation exist after aborted cancer surgery. Given the unique and complex care needs of this patient population, additional research is needed to optimize supportive care strategies.
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Affiliation(s)
- Jordan M. Cloyd
- From the Division of Surgical Oncology, Department of Surgery, The Ohio State University Wexner Medical Center, Columbus, OH
| | - Rakhsha Khatri
- From the Division of Surgical Oncology, Department of Surgery, The Ohio State University Wexner Medical Center, Columbus, OH
| | - Angela Sarna
- From the Division of Surgical Oncology, Department of Surgery, The Ohio State University Wexner Medical Center, Columbus, OH
| | - Lena Stevens
- From the Division of Surgical Oncology, Department of Surgery, The Ohio State University Wexner Medical Center, Columbus, OH
| | - Victor Heh
- From the Division of Surgical Oncology, Department of Surgery, The Ohio State University Wexner Medical Center, Columbus, OH
| | - Mary Dillhoff
- From the Division of Surgical Oncology, Department of Surgery, The Ohio State University Wexner Medical Center, Columbus, OH
| | - Alex Kim
- Department of Surgery, UT Southwestern Medical Center, Dallas, TX
| | - Timothy M. Pawlik
- From the Division of Surgical Oncology, Department of Surgery, The Ohio State University Wexner Medical Center, Columbus, OH
| | - Aslam Ejaz
- Division of Surgical Oncology, Department of Surgery, University of Illinois Chicago, Chicago, IL
| | - Sharla Wells-Di Gregorio
- Division of Palliative Medicine, Department of Internal Medicine, The Ohio State University Wexner Medical Center, Columbus, OH
| | - Erin Scott
- Division of Palliative Medicine, Department of Internal Medicine, The Ohio State University Wexner Medical Center, Columbus, OH
| | - Sachin S. Kale
- Division of Palliative Medicine, Department of Internal Medicine, The Ohio State University Wexner Medical Center, Columbus, OH
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Katyukha A, Qiu F, Qeska D, Manoragavan R, Wijeysundera HC, Cheung CC. Relationship Between Social Deprivation and Access to Catheter Ablation for Atrial Fibrillation: A Population-Level Study. JACC. ADVANCES 2024; 3:101400. [PMID: 39629063 PMCID: PMC11612362 DOI: 10.1016/j.jacadv.2024.101400] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Subscribe] [Scholar Register] [Received: 07/09/2024] [Revised: 10/02/2024] [Accepted: 10/08/2024] [Indexed: 12/06/2024]
Abstract
Background Access to catheter ablation for atrial fibrillation (AF) may vary due to social deprivation. Objectives This study sought to characterize the correlation between our outcomes of interest (rates of AF diagnoses, ablation referrals, and procedures) and the association between social deprivation and our outcomes. Methods Rates and correlations of AF diagnoses, ablation referrals, and procedures were reported across 49 census divisions in Ontario, Canada. We used the Ontario Marginalization Index to determine the relationship between dependency, material deprivation, ethnic concentration, and residential instability and our outcomes. Results Between April 2016 and March 2020, there were 146,366 patients diagnosed with AF; 6,506 patients were referred for ablation; and 4,673 patients underwent de novo ablation. The median age was 72 years (IQR: 61-81 years; 45% female) for the AF cohort and 62 years (IQR: 55-69 years, 33% to 34% female) for the referral and procedure cohorts. There was geographic variation and a weak concordance between AF diagnoses, ablation referrals, and procedures (correlation coefficients 0.33-0.36). Increased material deprivation was associated with more AF diagnoses (rate ratio [RR]: 1.13), but fewer ablation referrals (RR: 0.49) and procedures (RR: 0.48). Increased residential instability was associated with more AF diagnoses (RR: 1.02), but fewer ablation referrals (RR: 0.63) and procedures (RR: 0.64). Higher ethnic concentration was associated with fewer AF diagnoses, ablation referrals, and procedures. Conclusions In a jurisdiction with universal health care, greater material deprivation and residential instability were associated with more AF diagnoses but less access to ablation, suggesting substantial social gradients in equitable access to AF care.
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Affiliation(s)
- Andriy Katyukha
- Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada
- University of Toronto Department of Medicine, Toronto, Ontario, Canada
- Schulich Heart Program, Sunnybrook Health Sciences Centre, University of Toronto, Toronto, Ontario, Canada
| | | | - Denis Qeska
- Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada
- Schulich Heart Program, Sunnybrook Health Sciences Centre, University of Toronto, Toronto, Ontario, Canada
| | - Ragavie Manoragavan
- Schulich Heart Program, Sunnybrook Health Sciences Centre, University of Toronto, Toronto, Ontario, Canada
| | - Harindra C. Wijeysundera
- Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada
- Schulich Heart Program, Sunnybrook Health Sciences Centre, University of Toronto, Toronto, Ontario, Canada
- ICES, Toronto, Ontario, Canada
| | - Christopher C. Cheung
- Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada
- Schulich Heart Program, Sunnybrook Health Sciences Centre, University of Toronto, Toronto, Ontario, Canada
- ICES, Toronto, Ontario, Canada
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23
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Thompson L, Florissi C, Yoon J, Singh A, Saraf A. Optimizing Care Across the Continuum for Older Adults with Lung Cancer: A Review. Cancers (Basel) 2024; 16:3800. [PMID: 39594755 PMCID: PMC11593030 DOI: 10.3390/cancers16223800] [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: 09/26/2024] [Revised: 11/01/2024] [Accepted: 11/04/2024] [Indexed: 11/28/2024] Open
Abstract
Older adults with lung cancer experience inferior clinical outcomes compared to their younger counterparts. This review provides the scaffolding to address these disparities by delineating (1) the distinct and varied care needs of older adults with lung malignancies, (2) evidence-based measures for identifying subgroups within this population meriting tailored approaches to care, (3) age-specific considerations for the selection of cancer-directed therapy, and (4) opportunities for future work to enhance clinical outcomes and care delivery.
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Affiliation(s)
- Leah Thompson
- Department of Radiation Oncology, Brigham and Women’s Hospital, Boston, MA 02115, USA
- Harvard Medical School, Boston, MA 02115, USA; (C.F.)
| | | | - Jaewon Yoon
- Harvard Medical School, Boston, MA 02115, USA; (C.F.)
| | - Anupama Singh
- Department of Surgery, University of Massachusetts Chan Medical School, Worcester, MA 01655, USA;
| | - Anurag Saraf
- Department of Radiation Oncology, Brigham and Women’s Hospital, Boston, MA 02115, USA
- Harvard Medical School, Boston, MA 02115, USA; (C.F.)
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24
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Moons L, Ombelet F, Deschodt M, De Roo ML, Oldenburger E, Bossuyt I, Pype P. Interprofessional collaboration between hospital-based palliative care teams and general healthcare workers: A realist review protocol. PLoS One 2024; 19:e0310709. [PMID: 39527554 PMCID: PMC11554213 DOI: 10.1371/journal.pone.0310709] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/01/2024] [Accepted: 09/02/2024] [Indexed: 11/16/2024] Open
Abstract
BACKGROUND Palliative care, vital for patients with advanced, life-limiting or life-threatening illnesses, faces an increasing global demand due to aging populations and rising non-communicable diseases. Specialized palliative care teams (PCTs) within hospitals significantly impact patient outcomes, which requires effective interprofessional collaboration with general healthcare workers. Therefore, We will conduct a realist review to explore the contextual factors, mechanisms and outcomes related to the interprofessional collaboration between PCTs and general healthcare workers. METHODS Grounded in the third generation Cultural-Historical Activity Theory, this review will follow 5-step iterative process. First, a preliminary literature search will define the review scope. Second, based on the preliminary searches an initial program theory will be developed. Third, systematic searches across PubMed, Embase, CINHAL, Web of Science, and Scopus will be caried out. Fourth, data extraction of included studies will be conducted. Simultaneously, relevance and rigour of individual studies will be evaluated. Lastly, data analysis and synthesis will be conducted in which identified individual Context-Mechanism-Outcome (CMO) configurations will be combined in chains of inference through which hypotheses can be formulated. In summary, this realist review will refine an initially developed program theory, producing a framework elucidating how interprofessional collaboration works between PCTs and general healthcare workers. DISCUSSION This review aims to provide crucial insights into interprofessional collaboration between PCTs and general healthcare workers, informing optimized palliative care delivery in acute care hospitals for diverse stakeholders.
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Affiliation(s)
- Louana Moons
- Department of Public Health and Primary Care, Gerontology and Geriatrics, KU Leuven, Leuven, Belgium
- Department of Palliative Medicine, University Hospitals Leuven, Leuven, Belgium
| | - Fouke Ombelet
- Department of Neurology, University Hospitals Leuven, Leuven, Belgium
- Laboratory of Neurobiology, Center for Brain & Disease Research, VIB, Leuven, Belgium
- Department of Neurosciences, Leuven Brain Institute (LBI), KU Leuven, Leuven, Belgium
| | - Mieke Deschodt
- Competence Center of Nursing, University Hospitals Leuven, Leuven, Belgium
| | - Maaike L. De Roo
- Department of Public Health and Primary Care, Gerontology and Geriatrics, KU Leuven, Leuven, Belgium
- Department of Geriatrics, University Hospitals Leuven, Leuven, Belgium
| | - Eva Oldenburger
- Department of Palliative Medicine, University Hospitals Leuven, Leuven, Belgium
- Department of Radiation Oncology, University Hospitals Leuven, Leuven, Belgium
| | - Inge Bossuyt
- Department of Palliative Medicine, University Hospitals Leuven, Leuven, Belgium
| | - Peter Pype
- Department of Public Health and Primary Care, Unit Interprofessional Collaboration in Education, Research, and Practice, Faculty of Medicine and Health Sciences, Ghent University, Ghent, Belgium
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Matsumoto Y, Umemura S, Okizaki A, Fujisawa D, Yamaguchi T, Oyamada S, Miyaji T, Mashiko T, Kobayashi N, Satomi E, Kiuchi D, Morita T, Uchitomi Y, Goto K, Ohe Y. Nurse-Led Screening-Triggered Early Specialized Palliative Care Program for Patients With Advanced Lung Cancer: A Multicenter Randomized Controlled Trial. Cancer Med 2024; 13:e70325. [PMID: 39556485 PMCID: PMC11572738 DOI: 10.1002/cam4.70325] [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: 04/30/2024] [Revised: 09/19/2024] [Accepted: 09/28/2024] [Indexed: 11/20/2024] Open
Abstract
BACKGROUND We aimed to examine the effectiveness of a nurse-led, screening-triggered early specialized palliative care intervention program for patients with advanced lung cancer. METHODS Patients with advanced lung cancer who underwent initial chemotherapy were randomized to intervention and usual care groups between January 2017 and September 2019. The intervention comprised comprehensive needs assessments, counseling, and service coordination by advanced-level nurses. Patients in the usual care group received the usual oncological care. The primary end point was a change in the trial outcome index (TOI) scores from baseline to 12 weeks. The secondary end-points were TOI scores at week 20, depression, anxiety, and survival. RESULTS In total, 102 patients were assigned to each group. Compared with the usual care group, no significant improvement in TOI scores was observed at 12 weeks in the intervention group (mean group difference: 2.13; 90% confidence interval: -0.70, 4.95; p = 0.107, one-sided), whereas significant improvement was observed at 20 weeks (3.58; 90% confidence interval: 0.15, 7.00; p = 0.043). There were no significant differences in the change from baseline depression and anxiety between the groups from baseline at week 12 and 20 weeks (depression: p = 0.60 and 0.10, anxiety: p = 0.78 and 0.067). Survival did not significantly differ between the groups (median survival time: 12.1 vs. 11.1 months; p = 0.302). CONCLUSIONS Nurse-led, screening-triggered, early specialized palliative care did not show significant superiority over usual care during the 12-week study period. However, it may have yielded delayed clinical benefits, such as improved quality of life and this feasible model can be acceptable in clinical practice. TRIAL REGISTRATION The University Hospital Medical Information Network Clinical Trials Registry: UMIN000025491.
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Affiliation(s)
- Yoshihisa Matsumoto
- Department of Palliative MedicineNational Cancer Center Hospital EastKashiwaJapan
- Department of Palliative TherapyCancer Institute Hospital of Japanese Foundation for Cancer ResearchTokyoJapan
| | - Shigeki Umemura
- Department of Thoracic OncologyNational Cancer Center Hospital EastKashiwaJapan
| | - Ayumi Okizaki
- Department of Palliative MedicineNational Cancer Center Hospital EastKashiwaJapan
- Center for Public Health SciencesNational Cancer CenterTokyoJapan
- Innovation Center for SupportivePalliative and Psychosocial Care, National Cancer Center HospitalTokyoJapan
| | - Daisuke Fujisawa
- Department of NeuropsychiatryKeio University School of MedicineTokyoJapan
| | - Takuhiro Yamaguchi
- Division of BiostatisticsTohoku University School of MedicineSendaiJapan
| | - Shunsuke Oyamada
- Division of BiostatisticsTohoku University School of MedicineSendaiJapan
- Department of BiostatisticsJORTC Data CenterTokyoJapan
| | - Tempei Miyaji
- Innovation Center for SupportivePalliative and Psychosocial Care, National Cancer Center HospitalTokyoJapan
- Department of Clinical Trial Data ManagementGraduate School of Medicine, the University of TokyoTokyoJapan
| | - Tomoe Mashiko
- Innovation Center for SupportivePalliative and Psychosocial Care, National Cancer Center HospitalTokyoJapan
| | - Naoko Kobayashi
- Department of NursingNational Cancer Center Hospital EastKashiwaJapan
| | - Eriko Satomi
- Department of Palliative MedicineNational Cancer Center HospitalTokyoJapan
| | - Daisuke Kiuchi
- Department of Palliative MedicineNational Cancer Center HospitalTokyoJapan
- Department of Palliative CareCenter Hospital of the National Center for Global Health and MedicineTokyoJapan
| | - Tatsuya Morita
- Palliative and Supportive CareSeirei Mikatahara HospitalHamamatsuJapan
| | - Yosuke Uchitomi
- Center for Public Health SciencesNational Cancer CenterTokyoJapan
- Innovation Center for SupportivePalliative and Psychosocial Care, National Cancer Center HospitalTokyoJapan
| | - Koichi Goto
- Department of Thoracic OncologyNational Cancer Center Hospital EastKashiwaJapan
| | - Yuichiro Ohe
- Department of Thoracic OncologyNational Cancer Center HospitalTokyoJapan
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Gabbard J, Nur S, Levine BJ, Lycan TW, Pajewski N, Frechman E, Callahan KE, Klepin H, McLouth LE. The Association Between an Electronic Health Record (EHR)-Embedded Frailty Index and Patient-Reported Outcomes Among Patients with Metastatic Non-Small-Cell Lung Cancer on Immunotherapy: A Brief Report. Am J Hosp Palliat Care 2024; 41:1280-1287. [PMID: 38133583 PMCID: PMC11192858 DOI: 10.1177/10499091231223964] [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: 12/23/2023] Open
Abstract
Background: While frailty is a well-established predictor of overall mortality among patients with metastatic non-small cell lung cancer (mNSCLC), its association with patient-reported outcomes is not well-characterized. The goal of this study was to examine the association between an electronic frailty index (eFI) score and patient-reported outcome measures along with prognostic awareness among patients with mNSCLC receiving immunotherapy. Methods: In a cross-sectional study, patients with mNSCLC who were on immunotherapy completed the European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC-QLQ-C30) and the National Cancer Institute Patient Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). We utilized bivariate analyses to compare quality of life, symptoms, supportive services, and prognostic awareness among 3 groups defined by e-frailty status. Results: Sixty patients (mean age 62.5 years, 75% Caucasian, 60% women) participated. Most patients were pre-frail (68%), with 13% being frail and 18% non-frail. Pre-frail and frail patients had significantly lower physical function scores (mean 83.9 fit vs 74.8 pre-frail vs 60.0 frail, P = .04) and higher rates of self-reported pain (75% frail vs 41.5% pre-frail vs 18.2% fit; P = .04) compared to non-frail patients. We found no differences in palliative referral rates. Conclusion: Pre-frail and frail mNSCLC patients identified by the eFI have higher rates of pain and physical functional impairments than non-frail patients. These findings highlight the importance of emphasizing preventive interventions targeting social needs, functional limitations, and pain management, especially among pre-frail patients to reduce further decline.
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Affiliation(s)
- Jennifer Gabbard
- Department of Internal Medicine, Section on Gerontology and Geriatric Medicine, Wake Forest University School of Medicine, Winston-Salem, NC, USA
- School of Medicine, Wake Forest University, Winston-Salem, NC, USA
| | - Saadia Nur
- School of Medicine, Wake Forest University, Winston-Salem, NC, USA
| | - Beverly J. Levine
- Department of Social Sciences and Health Policy, School of Medicine, Wake Forest University, Winston-Salem, NC, USA
| | - Thomas W. Lycan
- Department of Internal Medicine, Section on Hematology and Oncology, Wake Forest University School of Medicine, Winston-Salem, NC, USA
| | - Nicholas Pajewski
- Department of Biostatistics and Data Science, Wake Forest University School of Medicine, Winston-Salem, NC, USA
| | - Erica Frechman
- Department of Internal Medicine, Section on Gerontology and Geriatric Medicine, Wake Forest University School of Medicine, Winston-Salem, NC, USA
| | - Kathryn E. Callahan
- Department of Internal Medicine, Section on Gerontology and Geriatric Medicine, Wake Forest University School of Medicine, Winston-Salem, NC, USA
- School of Medicine, Wake Forest University, Winston-Salem, NC, USA
| | - Heidi Klepin
- Department of Internal Medicine, Section on Hematology and Oncology, Wake Forest University School of Medicine, Winston-Salem, NC, USA
| | - Laurie E. McLouth
- Department of Behavioral Science, University of Kentucky College of Medicine, Lexington, KY, USA
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Hui D, Maxwell JP, de la Rosa A, Jennings K, Vidal M, Reddy A, Azhar A, Dev R, Tanco K, Heung Y, Delgado-Guay M, Zhukovsky D, Arthur J, Reddy S, Yennu S, Ontai A, Bruera E. The impact of a web-based prognostic calculator on prognostic confidence in outpatient palliative care. Support Care Cancer 2024; 32:714. [PMID: 39377783 PMCID: PMC11875840 DOI: 10.1007/s00520-024-08911-7] [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: 07/29/2024] [Accepted: 09/30/2024] [Indexed: 10/09/2024]
Abstract
PURPOSE Clinicians are often uncertain about their prognostic estimates, which may impede prognostic communication and clinical decision-making. We assessed the impact of a web-based prognostic calculator on physicians' prognostic confidence. METHODS In this prospective study, palliative care physicians estimated the prognosis of patients with advanced cancer in an outpatient clinic using the temporal, surprise, and probabilistic approaches for 6 m, 3 m, 2 m, 1 m, 2 w, 1 w, and 3 d. They then reviewed information from www.predictsurvival.com , which calculated survival estimates from seven validated prognostic scores, including the Palliative Prognostic Score, Palliative Prognostic Index, and Palliative Performance Status, and again provided their prognostic estimates after calculator use. The primary outcome was prognostic confidence in temporal CPS (0-10 numeric rating scale, 0 = not confident, 10 = most confident). RESULTS Twenty palliative care physicians estimated prognoses for 217 patients. The mean (standard deviation) prognostic confidence significantly increased from 5.59 (1.68) before to 6.94 (1.39) after calculator use (p < 0.001). A significantly greater proportion of physicians reported feeling confident enough in their prognosis to share it with patients (44% vs. 74%, p < 0.001) and formulate care recommendations (80% vs. 94%, p < 0.001) after calculator use. Prognostic accuracy did not differ significantly before or after calculator use, ranging from 55-100%, 29-98%, and 48-100% for the temporal, surprise, and probabilistic approaches, respectively. CONCLUSION This web-based prognostic calculator was associated with increased prognostic confidence and willingness to discuss prognosis. Further research is needed to examine how prognostic tools may augment prognostic discussions and clinical decision-making.
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Affiliation(s)
- David Hui
- Department of Palliative, Rehabilitation and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Unit 1414, 11515 Holcombe Boulevard, Houston, TX, 77030, USA.
- Department of General Oncology, The University of Texas MD Anderson Cancer Center, Houston, TX, USA.
| | | | - Allison de la Rosa
- Department of Palliative, Rehabilitation and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Unit 1414, 11515 Holcombe Boulevard, Houston, TX, 77030, USA
| | - Kristofer Jennings
- Department of Biostatistics, The University of Texas MD Anderson Cancer Center, Houston, TX, USA
| | - Marieberta Vidal
- Department of Palliative, Rehabilitation and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Unit 1414, 11515 Holcombe Boulevard, Houston, TX, 77030, USA
| | - Akhila Reddy
- Department of Palliative, Rehabilitation and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Unit 1414, 11515 Holcombe Boulevard, Houston, TX, 77030, USA
| | - Ahsan Azhar
- Department of Palliative, Rehabilitation and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Unit 1414, 11515 Holcombe Boulevard, Houston, TX, 77030, USA
| | - Rony Dev
- Department of Palliative, Rehabilitation and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Unit 1414, 11515 Holcombe Boulevard, Houston, TX, 77030, USA
| | - Kimberson Tanco
- Department of Palliative, Rehabilitation and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Unit 1414, 11515 Holcombe Boulevard, Houston, TX, 77030, USA
| | - Yvonne Heung
- Department of Palliative, Rehabilitation and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Unit 1414, 11515 Holcombe Boulevard, Houston, TX, 77030, USA
| | - Marvin Delgado-Guay
- Department of Palliative, Rehabilitation and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Unit 1414, 11515 Holcombe Boulevard, Houston, TX, 77030, USA
| | - Donna Zhukovsky
- Department of Palliative, Rehabilitation and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Unit 1414, 11515 Holcombe Boulevard, Houston, TX, 77030, USA
| | - Joseph Arthur
- Department of Palliative, Rehabilitation and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Unit 1414, 11515 Holcombe Boulevard, Houston, TX, 77030, USA
| | - Suresh Reddy
- Department of Palliative, Rehabilitation and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Unit 1414, 11515 Holcombe Boulevard, Houston, TX, 77030, USA
| | - Sriram Yennu
- Department of Palliative, Rehabilitation and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Unit 1414, 11515 Holcombe Boulevard, Houston, TX, 77030, USA
| | - Amy Ontai
- Department of Palliative, Rehabilitation and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Unit 1414, 11515 Holcombe Boulevard, Houston, TX, 77030, USA
| | - Eduardo Bruera
- Department of Palliative, Rehabilitation and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Unit 1414, 11515 Holcombe Boulevard, Houston, TX, 77030, USA
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Ito Süffert SC, Mantese CEA, Meira FRDC, Trindade KFRDO, Etges APBDS, Vargas Alves RJ, Bica CG. End-of-Life Costs in Cancer Patients: A Systematic Review. Am J Hosp Palliat Care 2024:10499091241285890. [PMID: 39313454 DOI: 10.1177/10499091241285890] [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: 09/25/2024] Open
Abstract
OBJECTIVES Identify the costs of an oncology patient at the end of life. METHODS A systematic literature review was conducted by screening Embase, PubMed and Lilacs databases, including all studies evaluating end-of-life care costs for cancer patients up to March 2024. The review writing followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. The quality of the included studies was assessed using the Drummond checklist. The protocol is available at PROSPERO CRD42023403186. RESULTS A total of 733 studies were retrieved, and 43 were considered eligible. Among the studies analyzed, 41,86% included all types of neoplasms, 18.60% of lung neoplasm, All articles performed direct cost analysis, and 9.30% also performed indirect cost analysis. No study evaluated intangible costs, and most presented the macrocosting methodology from the payer's perspective. The articles included in this review presented significant heterogeneity related to populations, diagnoses, periods considered for evaluation of end-of-life care, and cost analyses. Most of the studies were from a payer perspective (74,41%) and based on macrocosting methodologies (81,39%), which limit the use of the information to evaluate variabilities in the consumption of resources. CONCLUSIONS Considering the complexity of end-of-life care and the need for consistent data on costs in this period, new studies, mainly in low- and middle-income countries with approaches to indirect and intangible costs, with a societal perspective, are important for public policies of health in accordance with the trend of transforming value-based care, allowing the health care system to create more value for patients and their families.
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Affiliation(s)
- Soraya Camargo Ito Süffert
- Graduate Program of Pathology, Federal University of Health Sciences of Porto Alegre (UFCSPA), Porto Alegre, Brazil
| | | | | | | | - Ana Paula Beck da Silva Etges
- Graduation Program in Epidemiology, Federal University of Rio Grande do Sul, Porto Alegre, Brazil
- PEV Healthcare Consulting, Porto Alegre, Brazil
| | - Rafael José Vargas Alves
- Hospital Santa Rita, Irmandade da Santa Casa de Misericórdia de Porto Alegre, Porto Alegre, Brazil
- Department of Clinical Medicine, Federal University of Health Sciences of Porto Alegre (UFCSPA), Porto Alegre, Brazil
- National Institute for Health Technology Assessment-IATS/CNPq, Federal University of Rio Grande do Sul (UFRGS), Porto Alegre, Brazil
| | - Claudia Giuliano Bica
- Graduate Program of Pathology, Federal University of Health Sciences of Porto Alegre (UFCSPA), Porto Alegre, Brazil
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Hoveidaei A, Karimi M, Khalafi V, Fazeli P, Hoveidaei AH. Impacts of radiation therapy on quality of life and pain relief in patients with bone metastases. World J Orthop 2024; 15:841-849. [PMID: 39318492 PMCID: PMC11417628 DOI: 10.5312/wjo.v15.i9.841] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/29/2024] [Revised: 07/31/2024] [Accepted: 08/15/2024] [Indexed: 09/12/2024] Open
Abstract
Bone metastases (BM) are a common complication in advanced cancer patients, significantly contributing to morbidity and mortality due to their ability to cause pain, fractures, and spinal cord compression. Radiation therapy (RT) is vital in managing these complications by targeting metastatic lesions to ease pain, improve mobility, and reduce the risk of skeletal-related events such as fractures. Evidence supports the effectiveness of RT in pain relief, showing its ability to provide significant palliation and lessen the need for opioid painkillers, thereby enhancing the overall quality of life (QoL) for patients with BM. However, optimizing RT outcomes involves considerations such as the choice of radiation technique, dose fractionation schedules, and the integration of supportive care measures to mitigate treatment-related side effects like fatigue and skin reactions. These factors highlight the importance of personalized treatment planning tailored to individual patient needs and tumor characteristics. This mini-review aims to provide comprehensive insights into the multifaceted impacts of RT on pain management and QoL enhancement in BM patients, with implications for refining clinical practices and advancing patient care through the synthesis of findings from various studies.
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Affiliation(s)
- Armin Hoveidaei
- Students’ Scientific Research Center, Exceptional Talents Development Center, Tehran University of Medical Sciences, Tehran 1416753955, Iran
| | - Mehdi Karimi
- Bogomolets National Medical University, Kyiv 01601, Ukraine
| | - Vida Khalafi
- Student Research Committee, Jahrom University of Medical Sciences, Jahrom 7413188941, Iran
| | | | - Amir Human Hoveidaei
- International Center for Limb Lengthening, Rubin Institute for Advanced Orthopedics, Sinai Hospital of Baltimore, Baltimore, MD 21215, United States
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Greer JA, Temel JS, El-Jawahri A, Rinaldi S, Kamdar M, Park ER, Horick NK, Pintro K, Rabideau DJ, Schwamm L, Feliciano J, Chua I, Leventakos K, Fischer SM, Campbell TC, Rabow MW, Zachariah F, Hanson LC, Martin SF, Silveira M, Shoemaker L, Bakitas M, Bauman J, Spoozak L, Grey C, Blackhall L, Curseen K, O’Mahony S, Smith MM, Rhodes R, Cullinan A, Jackson V. Telehealth vs In-Person Early Palliative Care for Patients With Advanced Lung Cancer: A Multisite Randomized Clinical Trial. JAMA 2024; 332:2823624. [PMID: 39259563 PMCID: PMC11391365 DOI: 10.1001/jama.2024.13964] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/22/2024] [Accepted: 06/27/2024] [Indexed: 09/13/2024]
Abstract
Importance Numerous studies show that early palliative care improves quality of life and other key outcomes in patients with advanced cancer and their caregivers, although most lack access to this evidence-based model of care. Objective To evaluate whether delivering early palliative care via secure video vs in-person visits has an equivalent effect on quality of life in patients with advanced non-small cell lung cancer (NSCLC). Design, Setting, and Participants Randomized, multisite, comparative effectiveness trial from June 14, 2018, to May 4, 2023, at 22 US cancer centers among 1250 patients within 12 weeks of diagnosis of advanced NSCLC and 548 caregivers. Intervention Participants were randomized to meet with a specialty-trained palliative care clinician every 4 weeks either via video visit or in person in the outpatient clinic from the time of enrollment and throughout the course of disease. The video visit group had an initial in-person visit to establish rapport, followed by subsequent virtual visits. Main Outcomes and Measures Equivalence of the effect of video visit vs in-person early palliative care on quality of life at week 24 per the Functional Assessment of Cancer Therapy-Lung questionnaire (equivalence margin of ±4 points; score range: 0-136, with higher scores indicating better quality of life). Participants completed study questionnaires at enrollment and at weeks 12, 24, 36, and 48. Results By 24 weeks, participants (mean age, 65.5 years; 54.0% women; 82.7% White) had a mean of 4.7 (video) and 4.9 (in-person) early palliative care encounters. Patient-reported quality-of-life scores were equivalent between groups (video mean, 99.7 vs in-person mean, 97.7; difference, 2.0 [90% CI, 0.1-3.9]; P = .04 for equivalence). Rate of caregiver participation in visits was lower for video vs in-person early palliative care (36.6% vs 49.7%; P < .001). Study groups did not differ in caregiver quality of life, patient coping, or patient and caregiver satisfaction with care, mood symptoms, or prognostic perceptions. Conclusions and Relevance The delivery of early palliative care virtually vs in person demonstrated equivalent effects on quality of life in patients with advanced NSCLC, underscoring the considerable potential for improving access to this evidence-based care model through telehealth delivery. Trial Registration ClinicalTrials.gov Identifier: NCT03375489.
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Affiliation(s)
- Joseph A. Greer
- Department of Psychiatry, Massachusetts General Hospital, Boston
- Harvard Medical School, Boston, Massachusetts
| | - Jennifer S. Temel
- Harvard Medical School, Boston, Massachusetts
- Department of Medicine, Massachusetts General Hospital, Boston
| | - Areej El-Jawahri
- Harvard Medical School, Boston, Massachusetts
- Department of Medicine, Massachusetts General Hospital, Boston
| | - Simone Rinaldi
- Department of Medicine, Massachusetts General Hospital, Boston
| | - Mihir Kamdar
- Harvard Medical School, Boston, Massachusetts
- Department of Medicine, Massachusetts General Hospital, Boston
| | - Elyse R. Park
- Department of Psychiatry, Massachusetts General Hospital, Boston
- Harvard Medical School, Boston, Massachusetts
- Department of Medicine, Massachusetts General Hospital, Boston
| | - Nora K. Horick
- Department of Medicine, Massachusetts General Hospital, Boston
| | - Kedie Pintro
- Department of Medicine, Massachusetts General Hospital, Boston
| | - Dustin J. Rabideau
- Harvard Medical School, Boston, Massachusetts
- Department of Medicine, Massachusetts General Hospital, Boston
| | - Lee Schwamm
- Division of Vascular Neurology and Department of Biomedical Informatics and Data Science, Yale School of Medicine, New Haven, Connecticut
| | - Josephine Feliciano
- Department of Oncology, Johns Hopkins University School of Medicine, Baltimore, Maryland
| | - Isaac Chua
- Department of Psychosocial Oncology and Palliative Medicine, Dana-Farber Cancer Institute, Boston, Massachusetts
- Division of General Internal Medicine and Primary Care, Department of Medicine, Brigham and Women’s Hospital, Boston, Massachusetts
| | - Konstantinos Leventakos
- Department of Oncology and Mayo Clinic Comprehensive Cancer Center, Mayo Clinic, Rochester, Minnesota
| | - Stacy M. Fischer
- Department of Medicine, Division of General Internal Medicine, University of Colorado School of Medicine, Aurora
| | - Toby C. Campbell
- Department of Medicine, University of Wisconsin–Madison, Madison
| | - Michael W. Rabow
- Department of Medicine, University of California San Francisco, San Francisco
| | - Finly Zachariah
- Department of Supportive Care Medicine, City of Hope, Duarte, California
| | - Laura C. Hanson
- Division of Geriatric Medicine, Palliative Care and Hospice Program, University of North Carolina at Chapel Hill
| | - Sara F. Martin
- Division of General Internal Medicine and Public Health, Section of Palliative Care, Vanderbilt University Medical Center, Nashville, Tennessee
| | - Maria Silveira
- Division of Geriatric and Palliative Medicine, University of Michigan, Ann Arbor
- Geriatrics Research Education and Clinical Center, Lieutenant Colonel Charles S. Kettles VA Medical Center, Ann Arbor, Michigan
| | - Laura Shoemaker
- Department of Palliative and Supportive Care, Cleveland Clinic, Taussig Cancer Institute, Cleveland, Ohio
| | - Marie Bakitas
- School of Nursing and Center for Palliative and Supportive Care, University of Alabama at Birmingham
| | - Jessica Bauman
- Department of Hematology/Oncology, Fox Chase Cancer Center, Philadelphia, Pennsylvania
| | - Lori Spoozak
- Obstetrics and Gynecology and Palliative Medicine, University of Kansas School of Medicine, Kansas City
| | - Carl Grey
- Department of Internal Medicine, Atrium Health Wake Forest Baptist, Winston-Salem, North Carolina
| | - Leslie Blackhall
- Department of General Medicine, Hospice and Palliative Medicine, University of Virgina School of Medicine, Charlottesville
| | - Kimberly Curseen
- Division of Palliative Medicine, Department of Family and Preventive Medicine, Emory University, Emory School of Medicine, Atlanta, Georgia
| | - Sean O’Mahony
- Department of Internal Medicine, Rush University Medical Center, Chicago, Illinois
| | - Melanie M. Smith
- Division of Hospital Medicine, Section of Palliative Care, Department of Medicine, Northwestern Medicine, Feinberg School of Medicine, Chicago, Illinois
| | - Ramona Rhodes
- Department of Internal Medicine and Harold C. Simmons Comprehensive Cancer Center, University of Texas Southwestern Medical Center, Dallas
| | - Amelia Cullinan
- Department of Medicine, Dartmouth-Hitchcock Health, Lebanon, New Hampshire
| | - Vicki Jackson
- Harvard Medical School, Boston, Massachusetts
- Department of Medicine, Massachusetts General Hospital, Boston
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Bolek H, Arslan C, Basaran M, Cicin İ, Ozguroglu M, Tural D, Ürün Y. Perceptions and Expectations: A Study on Prognostic Perception and Quality of Life in Patients With Metastatic Renal and Bladder Cancer. JCO Glob Oncol 2024; 10:e2400201. [PMID: 39208383 DOI: 10.1200/go.24.00201] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/12/2024] [Revised: 06/29/2024] [Accepted: 07/25/2024] [Indexed: 09/04/2024] Open
Abstract
PURPOSE Durable complete response rates for metastatic renal cell carcinoma (mRCC) and metastatic bladder cancer (mBC) are low despite new therapy. Palliative care focuses on life extension and quality of life (QoL), not cure. This study aims to investigate patients' perceptions of treatment outcomes in mRCC and mBC and to assess the influence of QoL and optimism levels on these perceptions. METHODS From March 15, 2023, to January 15, 2024, a multicenter, cross-sectional online survey was carried out, targeting patients diagnosed with mRCC and mBC. The survey comprised structured questions aimed at evaluating perceptions concerning disease cure, symptom improvement, daily activity performance, and life extension due to treatment. Additionally, to evaluate optimism and QoL, the European Organization for Research and Treatment of Cancer 30.3 QoL questionnaire and life orientation test were implemented. Study on patients' perceptions of treatment outcomes in metastatic kidney and bladder cancer shows high optimism, inaccurate cure beliefs. RESULTS In total, 169 patients participated in the survey; the majority of the patients stated their general health status as good (72.2%) and excellent (13.6%). Patients who rated their overall health status as good-excellent had a higher median general QoL and optimism score compared with those who rated it as fair-poor. In all, 85.2% of patients considered the possibility of a cure very likely or likely. Most participants believed treatment could provide symptom relief (30.2% very likely, 49.1% likely), enhanced ability to perform daily activities (28.4% very likely, 55.6% likely), and life extension (32.5% very likely, 53.3% likely). Patients responding very likely and likely to these questions regarding treatment outcomes had higher QoL and optimism scores than those responding a little likely and not possible. CONCLUSION The majority of patients with mRCC and mBC held inaccurate beliefs about treatment outcomes. Better QoL and optimism were associated with increased inaccuracy.
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Affiliation(s)
- Hatice Bolek
- Department of Medical Oncology, Ankara University School of Medicine, Ankara, Turkey
- Ankara University Cancer Institute, Ankara, Turkey
| | - Cagatay Arslan
- Department of Medical Oncology, Izmir University of Economics, Medical Point Hospital, Izmir, Turkey
| | - Mert Basaran
- Department of Medical Oncology, Istanbul University School of Medicine, Istanbul, Turkey
| | - İrfan Cicin
- Department of Medical Oncology, Trakya University School of Medicine, Edirne, Turkey
| | - Mustafa Ozguroglu
- Department of Medical Oncology, Cerrahpasa School of Medicine, Istanbul, Turkey
| | - Deniz Tural
- Department of Medical Oncology, University of Health Science, Bakirkoy Dr Sadi Konuk Training and Research Hospital, Istanbul, Turkey
| | - Yüksel Ürün
- Department of Medical Oncology, Ankara University School of Medicine, Ankara, Turkey
- Ankara University Cancer Institute, Ankara, Turkey
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Shimer S, Allen OS, Yang C, Canavan M, Westvold S, Kim N, Morillo J, Parker T, Wallace N, Smith CB, Adelson KB. Prognostic Understanding, Goals of Care, and Quality of Life in Hospitalized Patients with Leukemia or Multiple Myeloma. J Palliat Med 2024; 27:879-887. [PMID: 38990245 DOI: 10.1089/jpm.2023.0530] [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] [Indexed: 07/12/2024] Open
Abstract
Background: Prior studies reveal a lack of illness understanding and prognostic awareness among patients with hematological malignancies. We evaluated prognostic awareness and illness understanding among patients with acute leukemia and multiple myeloma (MM) and measured patient-hematologist discordance. Methods: We prospectively enrolled patients with acute leukemia and MM at Mount Sinai Hospital or Yale New Haven Hospital between August 2015 and February 2020. Patients were administered a survey assessing prognostic awareness, goals of care (GOC), and quality of life. Hematologists completed a similar survey for each patient. We assessed discordance across the cohort of patients and hematologists using the likelihood-ratio chi-square test and within patient-hematologist pairs using the kappa (κ) statistic. Results: We enrolled 185 patients (137 with leukemia and 48 with MM) and 29 hematologists. Among patients, 137 (74%) self-identified as White, 27 (15%) as Black, and 21 (11%) as Hispanic. Across the entire cohort, patients were significantly more optimistic about treatment goals compared with hematologists (p = 0.027). Within patient-hematologist pairs, hematologists were significantly more optimistic than patients with respect to line of treatment (κ = 0.03). For both leukemia and MM cohorts, patients were significantly more likely to respond "don't know" or deferring to a faith-based response with 88 (64%) and 34 (71%), respectively, compared with only 28 (20%) and 11 (23%) of hematologists, respectively. Conclusions: We observed significant discordance regarding prognosis and GOC among patients with hematological malignancies and their hematologists. These data support future interventions to improve prognostic understanding among this patient population to facilitate informed treatment choices.
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Affiliation(s)
- Sophia Shimer
- Yale School of Medicine, New Haven, Connecticut, USA
- Beth Israel Deaconess Medical Center, New Haven, Connecticut, USA
| | - Olivia S Allen
- Division of Hematology/Oncology, Icahn School of Medicine at Mount Sinai, Tisch Cancer Institute, New York, New York, USA
| | - Chen Yang
- Division of General Internal Medicine, Icahn School of Medicine at Mount Sinai, New York, New York, USA
| | | | | | - Nina Kim
- Division of Hematology/Oncology, Icahn School of Medicine at Mount Sinai, Tisch Cancer Institute, New York, New York, USA
| | - Jose Morillo
- Division of General Internal Medicine, Icahn School of Medicine at Mount Sinai, New York, New York, USA
| | - Terri Parker
- Beth Israel Deaconess Medical Center, New Haven, Connecticut, USA
| | | | - Cardinale B Smith
- Division of Hematology/Oncology, Icahn School of Medicine at Mount Sinai, Tisch Cancer Institute, New York, New York, USA
- Brookdale Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, New York, USA
| | - Kerin B Adelson
- Yale School of Medicine, New Haven, Connecticut, USA
- MD Anderson Cancer Center, Houston, Texas, USA
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Walter JK, Madrigal V, Shah P, Kubis S, Himebauch AS, Feudtner C. The Impact of a Pediatric Continuity Care Intensivist Program on Patient and Parent Outcomes: An Unblinded Randomized Controlled Trial. J Pediatr Intensive Care 2024; 13:192-200. [PMID: 38919695 PMCID: PMC11196138 DOI: 10.1055/s-0041-1740360] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/19/2021] [Accepted: 10/24/2021] [Indexed: 10/19/2022] Open
Abstract
Objectives We studied the impact of a standardized continuity care intensivists (CCIs) program on patient and family outcomes for long-stay patients in the pediatric intensive care unit (PICU), also assessing the intervention's acceptability and feasibility. Methods A patient-level, unblinded randomized-controlled trial in a PICU at a large children's hospital. Participants included: (1) patients with ≥ 7 days PICU admission and likely to stay another 7 days; (2) their parents; (3) PICU attendings participating as continuity attendings; and (4) PICU attendings providing usual care (UC). We examined a bundled intervention: (1) standardized continuity attending role, (2) communication training course for CCI, and (3) standardized timing of contact between CCI and patient/family. Results Primary outcome was patient PICU length of stay. Secondary outcomes included patient, parental, and clinician outcomes. We enrolled 115 parent-patient dyads (231 subjects), 58 patients were randomized into treatment arm and 56 into the UC arm. Thirteen attendings volunteered to serve as CCI, 10 as UC. No association was found between the intervention and patient PICU length of stay ( p = 0.5), other clinical factors, or parental outcomes. The intervention met a threshold for feasibility of enrollment, retention, and implementation while the majority of providers agreed the intervention was acceptable with more efficient decision making. Thirty percent CCIs felt the role took too much time, and 20% felt time was not worth the benefits. Conclusion CCI intervention did not impact patient or family outcomes. PICU attendings believed that the implementation of the CCI program was feasible and acceptable with potential benefits for efficiency of decision making.
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Affiliation(s)
- Jennifer K. Walter
- Department of Pediatrics at Children's Hospital of Philadelphia and Perelman School of Medicine, Philadelphia, Pennsylvania, United States
| | - Vanessa Madrigal
- Department of Pediatrics, Pediatric Critical Care Medicine, Children's National Hospital and George Washington University, Washington, D.C., United States
| | - Parth Shah
- Perelman School of Medicine, Philadelphia, Pennsylvania, United States
| | - Sherri Kubis
- Cardiac Nursing at Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, United States
| | - Adam S. Himebauch
- Department of Anesthesiology and Critical Care, Children's Hospital of Philadelphia, Perelman School of Medicine, Philadelphia, Pennsylvania, United States
| | - Chris Feudtner
- Department of Pediatrics at Children's Hospital of Philadelphia and Perelman School of Medicine, Philadelphia, Pennsylvania, United States
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Petrillo LA, Jones KF, El-Jawahri A, Sanders J, Greer JA, Temel JS. Why and How to Integrate Early Palliative Care Into Cutting-Edge Personalized Cancer Care. Am Soc Clin Oncol Educ Book 2024; 44:e100038. [PMID: 38815187 DOI: 10.1200/edbk_100038] [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: 06/01/2024]
Abstract
Early palliative care, palliative care integrated with oncology care early in the course of illness, has myriad benefits for patients and their caregivers, including improved quality of life, reduced physical and psychological symptom burden, enhanced prognostic awareness, and reduced health care utilization at the end of life. Although ASCO and others recommend early palliative care for all patients with advanced cancer, widespread implementation of early palliative care has not been realized because of barriers such as insufficient reimbursement and a palliative care workforce shortage. Investigators have recently tested several implementation strategies to overcome these barriers, including triggers for palliative care consultations, telehealth delivery, navigator-delivered interventions, and primary palliative care interventions. More research is needed to identify mechanisms to distribute palliative care optimally and equitably. Simultaneously, the transformation of the oncology treatment landscape has led to shifts in the supportive care needs of patients and caregivers, who may experience longer, uncertain trajectories of cancer. Now, palliative care also plays a clear role in the care of patients with hematologic malignancies and may be beneficial for patients undergoing phase I clinical trials and their caregivers. Further research and clinical guidance regarding how to balance the risks and benefits of opioid therapy and safely manage cancer-related pain across this wide range of settings are urgently needed. The strengths of early palliative care in supporting patients' and caregivers' coping and centering decisions on their goals and values remain valuable in the care of patients receiving cutting-edge personalized cancer care.
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Affiliation(s)
- Laura A Petrillo
- Division of Palliative Care and Geriatrics, Massachusetts General Hospital, Boston, MA
- Harvard Medical School, Boston, MA
| | - Katie Fitzgerald Jones
- Harvard Medical School, Boston, MA
- New England Geriatrics Research, Education, and Clinical Center (GRECC), Jamaica Plain, MA
| | - Areej El-Jawahri
- Harvard Medical School, Boston, MA
- Division of Hematology/Oncology, Massachusetts General Hospital, Boston, MA
| | - Justin Sanders
- Division of Supportive and Palliative Care, McGill University Health Centre, Montreal, CA
- Department of Family Medicine, McGill University, Montreal, CA
| | - Joseph A Greer
- Harvard Medical School, Boston, MA
- Department of Psychiatry, Massachusetts General Hospital, Boston, MA
| | - Jennifer S Temel
- Harvard Medical School, Boston, MA
- Division of Hematology/Oncology, Massachusetts General Hospital, Boston, MA
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Martin A, Carton M, Thery L, Burnod A, Daniel C, Du Rusquec P, Girard N, Bouleuc C. Palliative care integration and end-of-life care intensity for patients with NSCLC. Lung Cancer 2024; 192:107800. [PMID: 38728972 DOI: 10.1016/j.lungcan.2024.107800] [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: 12/20/2023] [Revised: 02/15/2024] [Accepted: 04/23/2024] [Indexed: 05/12/2024]
Abstract
BACKGROUND Non-small cell lung cancer (NSCLC) without oncogenic driver mutations is considered to have a poor prognosis, although recent therapeutic progress. This study aims to assess the real-life integration of palliative care (PC) and the intensity of end-of-life (EOL) care for this population. METHODS This was an observational cohort study of decedent patients from metastatic NSCLC without oncogenic driver mutations over the period 01/2018 to 12/2022, treated in first line with immunotherapy +/- chemotherapy. We analysed PC integration and aggressiveness criteria of EOL care in the last month before death: systemic anti-cancer treatment administration, emergency room visits, intensive care unit admission, hospitalization, hospitalization duration > 14 days, and hospital death. RESULTS Among 149 patients, 75 (50 %) met the PC team at least once, and the median time from the first encounter to death was 2.3 months. In the last month before death, at least one criterion of aggressive EOL care was present for 97 patients (70 %). For patients with PC use < 30 days and for patients with PC use < 90 days before death, there were significant changes: increase in the frequency of systemic anti-cancer treatment (respectively 51.1 % vs 20 %; p < 0.001 and 58.7 % vs 6.2 %; p < 0.001); decrease in hospitalization lasting > 14 days (respectively 30 % vs 7 %; p = 0.001 and 36 % vs 6.2 %; p = 0.018) and in death hospitalisation (respectively 66 % and 18 %; p < 0.001 and 58.7 % and 10.3 %; p < 0.001). After adjusting for the factors tested, patients with no PC or late PC use in the last month before death or in the last three month before death, the odds ratio (OR) remained significantly greater than 1 (respectively OR = 3.97 [1.70; 9.98]; p = 0.001 and OR = 23.1 [5.21-177.0], p < 0.0001). CONCLUSION PC is still insufficiently integrated for patients with NSCL cancer. Cancer centres should monitor key indicators such as PC use and aggressiveness criteria of EOL care.
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Affiliation(s)
- A Martin
- Palliative care Department, Institut Curie, Paris, France
| | - M Carton
- Biostatistics Department, Institut Curie, Paris, France
| | - L Thery
- Palliative care Department, Institut Curie, Paris, France
| | - A Burnod
- Palliative care Department, Institut Curie, Paris, France
| | - C Daniel
- Oncology Department, Institut Curie, Paris, France
| | - P Du Rusquec
- Oncology Department, Institut Curie, Paris, France
| | - N Girard
- Oncology Department, Institut Curie, Paris, France
| | - C Bouleuc
- Supportive care Department, Institut Curie, Paris, France.
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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.
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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
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Giannubilo I, Battistuzzi L, Blondeaux E, Ruelle T, Poggio FB, Buzzatti G, D'Alonzo A, Della Rovere F, Latocca MM, Molinelli C, Razeti MG, Nardin S, Arecco L, Perachino M, Favero D, Borea R, Pronzato P, Del Mastro L, Bighin C. Patterns of care at the end of life: a retrospective study of Italian patients with advanced breast cancer. BMC Palliat Care 2024; 23:129. [PMID: 38778303 PMCID: PMC11110270 DOI: 10.1186/s12904-024-01460-0] [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: 08/01/2023] [Accepted: 05/15/2024] [Indexed: 05/25/2024] Open
Abstract
OBJECTIVES To better understand the type of care offered to Italian patients with advanced breast cancer at the End-of-Life (EoL), we conducted a retrospective observational study. EoL was defined as the period of six months before death. METHODS One hundred and twenty-one patients with advanced breast cancer (ABC) treated at IRCCS San Martino Policlinic Hospital who died between 2017 and 2021 were included. Data about patient, disease, and treatment characteristics from breast cancer diagnosis to death, along with information about comorbidities, medications, imaging, specialist evaluations, hospitalization, palliative care and home care, hospice admissions, and site of death were collected. RESULTS 98.3% of the patients received at least one line of active treatment at EoL; 52.8% were hospitalized during the selected period. Palliative (13.9%), psychological (7.4%), and nutritional evaluations (8.2%) were underutilized. Palliative home care was provided to 52% of the patients. Most of the patients died at home (66.1%) and fewer than one out of five (18.2%) died at the hospital. Among the patients who died at home, 27.3% had no palliative support. CONCLUSIONS Our findings indicate that palliative care in EoL breast cancer patients is still inadequate. Only a minority of patients had psychological and nutritional support While low nutritional support may be explained by the fact that typical symptoms of ABC do not involve the gastrointestinal tract, the lack of psychological support suggests that significant barriers still exist. Data on the site of death are encouraging, indicating that EoL management is increasingly home centered in Italy.
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Affiliation(s)
- Irene Giannubilo
- U.O. Oncologia Medica 2, IRCCS Ospedale Policlinico San Martino, Genova, Italy.
- Department of Internal Medicine and Medical Sciences (DiMI), School of Medicine, University of Genova, Genova, Italy.
| | - Linda Battistuzzi
- U.O. Oncologia Medica 2, IRCCS Ospedale Policlinico San Martino, Genova, Italy
| | - Eva Blondeaux
- U.O. Epidemiologia Clinica, IRCCS Ospedale Policlinico San Martino, Genova, IT, Italy
| | - Tommaso Ruelle
- U.O. Oncologia Medica 2, IRCCS Ospedale Policlinico San Martino, Genova, Italy
- Department of Internal Medicine and Medical Sciences (DiMI), School of Medicine, University of Genova, Genova, Italy
| | | | - Giulia Buzzatti
- U.O. Oncologia Medica 2, IRCCS Ospedale Policlinico San Martino, Genova, Italy
| | - Alessia D'Alonzo
- U.O. Oncologia Medica 2, IRCCS Ospedale Policlinico San Martino, Genova, Italy
| | - Federica Della Rovere
- SSD Cure Palliative Ed Hospice, IRCCS Ospedale Policlinico San Martino, Genova, Italy
| | | | - Chiara Molinelli
- U.O. Oncologia Medica 2, IRCCS Ospedale Policlinico San Martino, Genova, Italy
- Department of Internal Medicine and Medical Sciences (DiMI), School of Medicine, University of Genova, Genova, Italy
| | - Maria Grazia Razeti
- Department of Internal Medicine and Medical Sciences (DiMI), School of Medicine, University of Genova, Genova, Italy
- U.O.C. Clinica Di Oncologia Medica, IRCCS Ospedale Policlinico San Martino, Genova, Italy
| | - Simone Nardin
- U.O. Oncologia Medica 2, IRCCS Ospedale Policlinico San Martino, Genova, Italy
- Department of Internal Medicine and Medical Sciences (DiMI), School of Medicine, University of Genova, Genova, Italy
| | - Luca Arecco
- Department of Internal Medicine and Medical Sciences (DiMI), School of Medicine, University of Genova, Genova, Italy
- U.O.C. Clinica Di Oncologia Medica, IRCCS Ospedale Policlinico San Martino, Genova, Italy
| | - Marta Perachino
- Department of Internal Medicine and Medical Sciences (DiMI), School of Medicine, University of Genova, Genova, Italy
- U.O.C. Clinica Di Oncologia Medica, IRCCS Ospedale Policlinico San Martino, Genova, Italy
| | - Diletta Favero
- U.O. Oncologia Medica 2, IRCCS Ospedale Policlinico San Martino, Genova, Italy
- Department of Internal Medicine and Medical Sciences (DiMI), School of Medicine, University of Genova, Genova, Italy
| | - Roberto Borea
- U.O. Oncologia Medica 2, IRCCS Ospedale Policlinico San Martino, Genova, Italy
- Department of Internal Medicine and Medical Sciences (DiMI), School of Medicine, University of Genova, Genova, Italy
| | - Paolo Pronzato
- U.O. Oncologia Medica 2, IRCCS Ospedale Policlinico San Martino, Genova, Italy
| | - Lucia Del Mastro
- Department of Internal Medicine and Medical Sciences (DiMI), School of Medicine, University of Genova, Genova, Italy
- U.O.C. Clinica Di Oncologia Medica, IRCCS Ospedale Policlinico San Martino, Genova, Italy
| | - Claudia Bighin
- U.O. Oncologia Medica 2, IRCCS Ospedale Policlinico San Martino, Genova, Italy
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Subramaniam S, Adams DH, Tognela A, Roncolato F, Yip PY, Lim SHS, Roohullah A, Stockler MR, Kiely B. Patients' perception of the benefits of palliative systemic therapy for advanced cancer. Intern Med J 2024; 54:735-741. [PMID: 38205872 DOI: 10.1111/imj.16325] [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: 12/19/2022] [Accepted: 11/23/2023] [Indexed: 01/12/2024]
Abstract
BACKGROUND Patients with advanced cancer who misunderstand their prognosis and chance of cure tend to overestimate the likely benefits of palliative systemic therapy. AIM To determine patient perceptions of palliative systemic therapy benefits in advanced cancer. METHODS We surveyed 104 outpatients with advanced cancer receiving systemic anticancer therapy and their treating oncologists. Patients recorded their understanding of treatment impact on chance of cure and symptoms. Life expectancy was estimated by patients and oncologists. A visual analogue scale (0-10) was used to record how patients and oncologists valued quality of life (QOL) and length of life (LOL) (<4 QOL most important; 4-7 QOL and LOL equal; >7 LOL most important). Patient-oncologist discordance was defined as a ≥4-point difference. RESULTS The main reasons patients selected for receiving treatment were to live longer (54%) and cure their cancer (36%). Most patients reported treatment was very/somewhat likely to prolong life (84%) and improve symptoms (76%), whereas 20% reported treatment was very/somewhat likely to cure their cancer. 42% of patients selected a timeframe for life expectancy (choice of four timeframes between <1 year and ≥5 years); of these, 62% selected a longer timeframe than their oncologist. When making treatment decisions, 71% of patients (52% of oncologists) valued QOL and LOL equally. Patient-oncologist discordance was 21%, mostly because of oncologists valuing QOL more than their patients (70%). CONCLUSION At least 20% of patients receiving systemic therapy for advanced cancer reported an expectation of cure. Most patients and oncologists value QOL and LOL equally when making treatment decisions.
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Affiliation(s)
- Shalini Subramaniam
- NHMRC Clinical Trials Centre, Sydney, New South Wales, Australia
- Department of Medical Oncology, Bankstown Cancer Centre, Sydney, New South Wales, Australia
- Department of Medical Oncology, Concord Cancer Centre, Sydney, New South Wales, Australia
- University of Sydney, Sydney, New South Wales, Australia
| | - Diana H Adams
- Department of Medical Oncology, Macarthur Cancer Therapy Centre, Sydney, New South Wales, Australia
- Western Sydney University, Sydney, New South Wales, Australia
| | - Annette Tognela
- Department of Medical Oncology, Macarthur Cancer Therapy Centre, Sydney, New South Wales, Australia
- Western Sydney University, Sydney, New South Wales, Australia
| | - Felicia Roncolato
- NHMRC Clinical Trials Centre, Sydney, New South Wales, Australia
- Department of Medical Oncology, Macarthur Cancer Therapy Centre, Sydney, New South Wales, Australia
| | - Po Y Yip
- Department of Medical Oncology, Macarthur Cancer Therapy Centre, Sydney, New South Wales, Australia
- Western Sydney University, Sydney, New South Wales, Australia
| | - Stephanie H-S Lim
- Department of Medical Oncology, Macarthur Cancer Therapy Centre, Sydney, New South Wales, Australia
- Western Sydney University, Sydney, New South Wales, Australia
| | - Aflah Roohullah
- Department of Medical Oncology, Macarthur Cancer Therapy Centre, Sydney, New South Wales, Australia
- Western Sydney University, Sydney, New South Wales, Australia
- Department of Medical Oncology, Liverpool Cancer Therapy Centre, Sydney, New South Wales, Australia
| | - Martin R Stockler
- NHMRC Clinical Trials Centre, Sydney, New South Wales, Australia
- Department of Medical Oncology, Concord Cancer Centre, Sydney, New South Wales, Australia
- University of Sydney, Sydney, New South Wales, Australia
- Department of Medical Oncology, Chris O'Brien Lifehouse RPA, Sydney, New South Wales, Australia
| | - Belinda Kiely
- NHMRC Clinical Trials Centre, Sydney, New South Wales, Australia
- Department of Medical Oncology, Concord Cancer Centre, Sydney, New South Wales, Australia
- University of Sydney, Sydney, New South Wales, Australia
- Department of Medical Oncology, Macarthur Cancer Therapy Centre, Sydney, New South Wales, Australia
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Cambriel A, Serey K, Pollina-Bachellerie A, Cancel M, Michalet M, Bay JO, Bouleuc C, Lotz JP, Philippart F. Oncologists' perspective on advance directives, a French national prospective cross-sectional survey - the ADORE study. BMC Med Ethics 2024; 25:44. [PMID: 38600485 PMCID: PMC11008039 DOI: 10.1186/s12910-024-01046-8] [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: 12/26/2023] [Accepted: 04/03/2024] [Indexed: 04/12/2024] Open
Abstract
BACKGROUND The often poor prognosis associated with cancer necessitates empowering patients to express their care preferences. Yet, the prevalence of Advance Directives (AD) among oncology patients remains low. This study investigated oncologists' perspectives on the interests and challenges associated with implementing AD. METHODS A French national online survey targeting hospital-based oncologists explored five areas: AD information, writing support, AD usage, personal perceptions of AD's importance, and respondent's profile. The primary outcome was to assess how frequently oncologists provide patients with information about AD in daily clinical practice. Additionally, we examined factors related to delivering information on AD. RESULTS Of the 410 oncologists (50%) who responded to the survey, 75% (n = 308) deemed AD relevant. While 36% (n = 149) regularly inform patients about AD, 25% (n = 102) remain skeptical about AD. Among the respondents who do not consistently discuss AD, the most common reason given is the belief that AD may induce anxiety (n = 211/353; 60%). Of all respondents, 90% (n = 367) believe patients require specific information to draft relevant AD. Physicians with experience in palliative care were more likely to discuss AD (43% vs 32.3%, p = 0.027). Previous experience in critical care was associated with higher levels of distrust towards AD (31.5% vs 18.8%, p = 0.003), and 68.5% (n = 281) of the respondents expressed that designating a "person of trust" would be more appropriate than utilizing AD. CONCLUSION Despite the perceived relevance of AD, only a third of oncologists regularly apprise their patients about them. Significant uncertainty persists about the safety and relevance of AD.
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Affiliation(s)
- Amélie Cambriel
- Department of Anesthesiology and Intensive Care, Saint-Antoine and Tenon Hospitals, Assistance Publique-Hôpitaux de Paris, Paris, France
- DMU DREAM, Sorbonne Université, Assistance Publique-Hôpitaux de Paris, GRC 29, Paris, France
- Department of Anesthesiology, Perioperative and Pain Medicine, Stanford University School of Medicine, Stanford, CA, USA
- REQUIEM (Research/Reflexion On End of Life Support Quality in Everyday Medical Practice) Study Group, Paris, France
| | - Kevin Serey
- Department of Anesthesiology and Intensive Care, Hôpital Ambroise Paré, Assistance Publique-Hôpitaux de Paris, Boulogne-Billancourt, France
- REQUIEM (Research/Reflexion On End of Life Support Quality in Everyday Medical Practice) Study Group, Paris, France
| | - Adrien Pollina-Bachellerie
- Department of Anesthesiology Cancer, University Institute of Toulouse-Oncopole, Toulouse, France
- REQUIEM (Research/Reflexion On End of Life Support Quality in Everyday Medical Practice) Study Group, Paris, France
| | - Mathilde Cancel
- Department of Medical Oncology, Centre Hospitalo-Universitaire Bretonneau, Tours, France
| | - Morgan Michalet
- University Federation of Radiation Oncology of Mediterranean Occitanie, Montpellier Cancer Institute, Université de Montpellier, Montpellier, France
| | - Jacques-Olivier Bay
- Department of Clinical Hematology and Cellular Therapy, Clermont-Ferrand University Hospital Center, Clermont-Ferrand, France
- Cancer Resistance Exploring and Targeting. EA7283, INSERM CIC501, BP 10448, Center, Clermont-Ferrand, France
| | - Carole Bouleuc
- Department of Supportive and Palliative Care, Institut Curie, Paris, France
| | - Jean-Pierre Lotz
- Service D'oncologie Médicale Et de Thérapie Cellulaire, Pôle Onco-Hématologie, APHP-HôpitauxUniversitaires de L'estParisien, 75020, Paris, France
- REQUIEM (Research/Reflexion On End of Life Support Quality in Everyday Medical Practice) Study Group, Paris, France
| | - Francois Philippart
- Medical and Surgical Intensive Care Unit, Groupe Hospitalier Paris Saint Joseph, 185 Rue R. Losserand, 75674, Paris, France.
- REQUIEM (Research/Reflexion On End of Life Support Quality in Everyday Medical Practice) Study Group, Paris, France.
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Mathews J, Merchant S, Galica J, Palmer MJ, O'Donnell J, Koven R, Booth C, Brundage M. Measuring prognostic awareness in patients with advanced cancer: a scoping review and interpretive synthesis of the impact of hope. J Natl Cancer Inst 2024; 116:506-517. [PMID: 38134429 DOI: 10.1093/jnci/djad267] [Citation(s) in RCA: 1] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/07/2023] [Accepted: 12/05/2023] [Indexed: 12/24/2023] Open
Abstract
BACKGROUND Assessment of prognostic awareness (PA) in patients with advanced cancer is challenging because patient responses often indicate their hopes. The objectives of this scoping review were to summarize studies that measured PA in patients with advanced cancer and to synthesize data about how PA was measured and whether hope was incorporated into the measurement. METHODS MEDLINE and Embase databases were searched from inception to December 14, 2021. Data regarding the impact of hope on assessment of PA were extracted when studies reported on patients' beliefs about prognosis and patients' beliefs about their doctor's opinion about prognosis. An interpretive synthesis approach was used to analyze the data and to generate a theory regarding the incorporation of hope into the assessment of PA. RESULTS In total, 52 studies representing 23 766 patients were included. Most were conducted in high-income countries and measured PA based on the goal of treatment (curable vs incurable). Five studies incorporated hope into the assessment of PA and reported that among patients who responded that their treatment goal was a cure, an average of 30% also acknowledged that their doctors were treating them with palliative intent. Interpretive synthesis of the evidence generated a trinary conceptualization of PA patients who are aware and accepting of their prognosis; aware and not accepting; and truly unaware. Each of these groups will benefit from different types of interventions to support their evolving PA. CONCLUSION The trinary conceptualization of PA may promote understanding of the impact of hope in the assessment of PA and guide future research.
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Affiliation(s)
- Jean Mathews
- Division of Palliative Medicine, Department of Medicine, Queen's University, Kingston, ON, Canada
- Department of Oncology, Queen's University, Kingston, ON, Canada
- Division of Cancer Care and Epidemiology, Queen's Cancer Research Institute, Kingston, ON, Canada
| | - Shaila Merchant
- Division of Cancer Care and Epidemiology, Queen's Cancer Research Institute, Kingston, ON, Canada
- Division of General Surgery and Surgical Oncology, Queen's University, Kingston, ON, Canada
| | - Jacqueline Galica
- Division of Cancer Care and Epidemiology, Queen's Cancer Research Institute, Kingston, ON, Canada
- School of Nursing, Queen's University, Kingston, ON, Canada
| | - Michael J Palmer
- Department of Oncology, Queen's University, Kingston, ON, Canada
| | - Jennifer O'Donnell
- Division of Cancer Care and Epidemiology, Queen's Cancer Research Institute, Kingston, ON, Canada
| | - Rachel Koven
- Division of Cancer Care and Epidemiology, Queen's Cancer Research Institute, Kingston, ON, Canada
| | - Christopher Booth
- Department of Oncology, Queen's University, Kingston, ON, Canada
- Division of Cancer Care and Epidemiology, Queen's Cancer Research Institute, Kingston, ON, Canada
| | - Michael Brundage
- Department of Oncology, Queen's University, Kingston, ON, Canada
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Sloss EA, McPherson JP, Beck AC, Guo JW, Scheese CH, Flake NR, Chalkidis G, Staes CJ. Patient and Caregiver Perceptions of an Interface Design to Communicate Artificial Intelligence-Based Prognosis for Patients With Advanced Solid Tumors. JCO Clin Cancer Inform 2024; 8:e2300187. [PMID: 38657194 PMCID: PMC11161249 DOI: 10.1200/cci.23.00187] [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: 09/18/2023] [Revised: 02/22/2024] [Accepted: 03/07/2024] [Indexed: 04/26/2024] Open
Abstract
PURPOSE Use of artificial intelligence (AI) in cancer care is increasing. What remains unclear is how best to design patient-facing systems that communicate AI output. With oncologist input, we designed an interface that presents patient-specific, machine learning-based 6-month survival prognosis information designed to aid oncology providers in preparing for and discussing prognosis with patients with advanced solid tumors and their caregivers. The primary purpose of this study was to assess patient and caregiver perceptions and identify enhancements of the interface for communicating 6-month survival and other prognosis information when making treatment decisions concerning anticancer and supportive therapy. METHODS This qualitative study included interviews and focus groups conducted between November and December 2022. Purposive sampling was used to recruit former patients with cancer and/or former caregivers of patients with cancer who had participated in cancer treatment decisions from Utah or elsewhere in the United States. Categories and themes related to perceptions of the interface were identified. RESULTS We received feedback from 20 participants during eight individual interviews and two focus groups, including four cancer survivors, 13 caregivers, and three representing both. Overall, most participants expressed positive perceptions about the tool and identified its value for supporting decision making, feeling less alone, and supporting communication among oncologists, patients, and their caregivers. Participants identified areas for improvement and implementation considerations, particularly that oncologists should share the tool and guide discussions about prognosis with patients who want to receive the information. CONCLUSION This study revealed important patient and caregiver perceptions of and enhancements for the proposed interface. Originally designed with input from oncology providers, patient and caregiver participants identified additional interface design recommendations and implementation considerations to support communication about prognosis.
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Affiliation(s)
| | - Jordan P. McPherson
- Huntsman Cancer Institute, University of Utah, Salt Lake City, UT
- College of Pharmacy, University of Utah, Salt Lake City, UT
| | - Anna C. Beck
- Huntsman Cancer Institute, University of Utah, Salt Lake City, UT
| | - Jia-Wen Guo
- College of Nursing, University of Utah, Salt Lake City, UT
- Department of Biomedical Informatics, University of Utah, Salt Lake City, UT
| | - Carolyn H. Scheese
- College of Nursing, University of Utah, Salt Lake City, UT
- Department of Biomedical Informatics, University of Utah, Salt Lake City, UT
| | - Naomi R. Flake
- Clinical & Translational Science Institute, University of Utah, Salt Lake City, UT
| | | | - Catherine J. Staes
- College of Nursing, University of Utah, Salt Lake City, UT
- Department of Biomedical Informatics, University of Utah, Salt Lake City, UT
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Bandieri E, Borelli E, Bigi S, Mucciarini C, Gilioli F, Ferrari U, Eliardo S, Luppi M, Potenza L. Positive Psychological Well-Being in Early Palliative Care: A Narrative Review of the Roles of Hope, Gratitude, and Death Acceptance. Curr Oncol 2024; 31:672-684. [PMID: 38392043 PMCID: PMC10888238 DOI: 10.3390/curroncol31020049] [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: 12/19/2023] [Revised: 01/11/2024] [Accepted: 01/19/2024] [Indexed: 02/24/2024] Open
Abstract
In the advanced cancer setting, low psychological functioning is a common symptom and its deleterious impact on health outcomes is well established. Yet, the beneficial role of positive psychological well-being (PPWB) on several clinical conditions has been demonstrated. Early palliative care (EPC) is a recent value-based model consisting of the early integration of palliative care into standard care for solid tumors and hematologic malignancies. While the late palliative care primary offers short-term interventions, predominantly pharmacological in nature and limited to physical symptom reduction, EPC has the potential to act over a longer term, enabling specific interventions aimed at promoting PPWB. This narrative review examines nine English studies retrieved from MEDLINE/PubMed, published up to October 2023, focusing on EPC and three dimensions of PPWB: hope, gratitude, and death acceptance. These dimensions consistently emerge in our clinical experience within the EPC setting for advanced cancer patients and appear to contribute to its clinical efficacy. The choice of a narrative review reflects the novelty of the topic, the limited existing research, and the need to incorporate a variety of methodological approaches for a comprehensive exploration.
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Affiliation(s)
- Elena Bandieri
- Oncology and Palliative Care Units, Civil Hospital Carpi, Unità Sanitaria Locale (USL), 41012 Carpi, Italy; (E.B.); (C.M.); (F.G.); (U.F.); (S.E.)
| | - Eleonora Borelli
- Department of Medical and Surgical Sciences, University of Modena and Reggio Emilia, 41124 Modena, Italy; (M.L.); (L.P.)
| | - Sarah Bigi
- Department of Linguistic Sciences and Foreign Literatures, Catholic University of the Sacred Heart, 20123 Milan, Italy;
| | - Claudia Mucciarini
- Oncology and Palliative Care Units, Civil Hospital Carpi, Unità Sanitaria Locale (USL), 41012 Carpi, Italy; (E.B.); (C.M.); (F.G.); (U.F.); (S.E.)
| | - Fabio Gilioli
- Oncology and Palliative Care Units, Civil Hospital Carpi, Unità Sanitaria Locale (USL), 41012 Carpi, Italy; (E.B.); (C.M.); (F.G.); (U.F.); (S.E.)
| | - Umberto Ferrari
- Oncology and Palliative Care Units, Civil Hospital Carpi, Unità Sanitaria Locale (USL), 41012 Carpi, Italy; (E.B.); (C.M.); (F.G.); (U.F.); (S.E.)
| | - Sonia Eliardo
- Oncology and Palliative Care Units, Civil Hospital Carpi, Unità Sanitaria Locale (USL), 41012 Carpi, Italy; (E.B.); (C.M.); (F.G.); (U.F.); (S.E.)
| | - Mario Luppi
- Department of Medical and Surgical Sciences, University of Modena and Reggio Emilia, 41124 Modena, Italy; (M.L.); (L.P.)
- Hematology Unit and Chair, Azienda Ospedaliera Universitaria di Modena, 41124 Modena, Italy
| | - Leonardo Potenza
- Department of Medical and Surgical Sciences, University of Modena and Reggio Emilia, 41124 Modena, Italy; (M.L.); (L.P.)
- Hematology Unit and Chair, Azienda Ospedaliera Universitaria di Modena, 41124 Modena, Italy
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Patterson M, Greenley S, Ma Y, Bullock A, Curry J, Smithson J, Lind M, Johnson MJ. Inoperable malignant bowel obstruction: palliative interventions outcomes - mixed-methods systematic review. BMJ Support Palliat Care 2024; 13:e515-e527. [PMID: 38557409 PMCID: PMC10850628 DOI: 10.1136/bmjspcare-2021-003492] [Citation(s) in RCA: 2] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/01/2021] [Accepted: 05/27/2022] [Indexed: 11/03/2022]
Abstract
BACKGROUND Parenteral nutrition (PN) and palliative venting gastrostomies (PVG) are two interventions used clinically to manage inoperable malignant bowel obstruction (MBO); however, little is known about their role in clinical and quality-of-life outcomes to inform clinical decision making. AIM To examine the impact of PN and PVG on clinical and quality-of-life outcomes in inoperable MBO. DESIGN A mixed-methods systematic review and narrative synthesis. DATA SOURCES The following databases were searched (from inception to 29 April 2021): MEDLINE, Embase, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Bielefeld Academic Search Engine, Health Technology Assessment and CareSearch for qualitative or quantitative studies of MBO, and PN or PVG. Titles, abstracts and papers were independently screened and quality appraised. RESULTS A total of 47 studies representing 3538 participants were included. Current evidence cannot tell us whether these interventions improve MBO survival, but this was a firm belief by patients and clinicians informing their decision. Both interventions appear to allow patients valuable time at home. PVG provides relief from nausea and vomiting. Both interventions improve quality of life but not without significant burdens. Nutritional and performance status may be maintained or improved with PN. CONCLUSION PN and PVG seem to allow valuable time at home. We found no conclusive evidence to show either intervention prolonged survival, due to the lack of randomised controlled trials that have to date not been performed due to concerns about equipoise. Well-designed studies regarding survival for both interventions are needed. PROSPERO REGISTRATION NUMBER CRD42020164170.
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Affiliation(s)
- Michael Patterson
- Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK
| | - Sarah Greenley
- Institute of Clinical and Applied Health Research, Hull York Medical School, Hull, UK
| | - Yangmyung Ma
- Department of Plastic Surgery, University Hospitals of North Midlands NHS Trust, Stoke-on-Trent, UK
| | - Alex Bullock
- Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK
| | - Jordan Curry
- Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK
| | - Jacquelyn Smithson
- Gastrointestinal and Liver services, Hull University Teaching Hospitals NHS Trust, Hull, UK
| | - Michael Lind
- Hull York Medical School, University of Hull, Hull, UK
| | - Miriam J Johnson
- Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK
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Affiliation(s)
- Vicki A Jackson
- From the Department of Medicine, Division of Palliative Care and Geriatric Medicine (V.A.J.), and the Center for Aging and Serious Illness Research (V.A.J., L.E.) and Cancer Outcomes Research and Education Program (V.A.J.), the Mongan Institute, Massachusetts General Hospital, and the Harvard Medical School Center for Palliative Care (V.A.J.) - both in Boston; and the Department of Supportive Oncology, Robert H. Lurie Comprehensive Cancer Center, Northwestern Medical Group, Feinberg School of Medicine, Chicago (L.E.)
| | - Linda Emanuel
- From the Department of Medicine, Division of Palliative Care and Geriatric Medicine (V.A.J.), and the Center for Aging and Serious Illness Research (V.A.J., L.E.) and Cancer Outcomes Research and Education Program (V.A.J.), the Mongan Institute, Massachusetts General Hospital, and the Harvard Medical School Center for Palliative Care (V.A.J.) - both in Boston; and the Department of Supportive Oncology, Robert H. Lurie Comprehensive Cancer Center, Northwestern Medical Group, Feinberg School of Medicine, Chicago (L.E.)
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45
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Loučka M, Althouse AD, Arnold RM, Smith TJ, Smith KJ, White DB, Rosenzweig MQ, Schenker Y. Hope and illness expectations: A cross-sectional study in patients with advanced cancer. Palliat Med 2024; 38:131-139. [PMID: 38087831 PMCID: PMC11552658 DOI: 10.1177/02692163231214422] [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] [Indexed: 01/19/2024]
Abstract
BACKGROUND The fear of taking away hope hinders clinicians' willingness to share serious news with patients with advanced disease. Unrealistic illness expectations, on the other hand, can complicate decision making and end-of-life care outcomes. Exploration of the association between hope and illness expectations can support clinicians in better communication with their patients. AIM The aim of this study was to explore whether realistic illness expectations are associated with reduced hope in people with advanced cancer. DESIGN This is a cross-sectional secondary analysis of baseline data from a primary palliative care cluster-randomized trial CONNECT (data collected from July 2016 to October 2020). Hope was measured by Herth Hope Index. Illness expectations were measured by assessing patients' understanding of their treatment goals, life expectancy, and terminal illness acknowledgement. Multivariable regression was performed, adjusting for demographical and clinical confounders. SETTING/PARTICIPANTS Adult patients with advanced solid cancers recruited across 17 oncology clinics. RESULTS Data from 672 patients were included in the study, with mean age of 69.3 years (±10.2), 53.6% were female. Proportion of patients indicating realistic expectations varied based on which question was asked from 10% to 46%. Median level of hope was 39 (IQR = 36-43). Multivariate non-inferiority regression did not find any significant differences in hope between patients with more and less realistic illness expectations. CONCLUSIONS Our results suggest that hope can be sustained while holding both realistic and unrealistic illness expectations. Communication about serious news should focus on clarifying the expectations as well as supporting people's hopes.
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Affiliation(s)
- Martin Loučka
- Third Faculty of Medicine, Charles University, Prague, Czech Republic
- Center for Palliative Care, Prague, Czech Republic
| | - Andrew D Althouse
- Department of Medicine, Center for Research on Health Care Data Center, University of Pittsburgh, Pittsburgh, PA, USA
| | - Robert M Arnold
- Section of Palliative Care and Medical Ethics, University of Pittsburgh Medical Center, University of Pittsburgh, Pittsburgh, PA, USA
- Palliative Research Center, University of Pittsburgh and Division of General Internal Medicine, University of Pittsburgh, Pittsburgh, PA, USA
| | - Thomas J Smith
- Division of General Internal Medicine, Section of Palliative Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA
| | - Kenneth J Smith
- Division of General Internal Medicine, University of Pittsburgh Medical Center, University of Pittsburgh, Pittsburgh, PA, USA
| | - Douglas B White
- Palliative Research Center, University of Pittsburgh and Division of General Internal Medicine, University of Pittsburgh, Pittsburgh, PA, USA
- Program on Ethics and Decision Making in Critical Illness, Department of Critical Care Medicine, University of Pittsburgh School of Medicine, Pittsburgh, PA, USA
| | - Margaret Q Rosenzweig
- Palliative Research Center, University of Pittsburgh and Division of General Internal Medicine, University of Pittsburgh, Pittsburgh, PA, USA
- School of Nursing, University of Pittsburgh, Pittsburgh, PA, USA
| | - Yael Schenker
- Section of Palliative Care and Medical Ethics, University of Pittsburgh Medical Center, University of Pittsburgh, Pittsburgh, PA, USA
- Palliative Research Center, University of Pittsburgh and Division of General Internal Medicine, University of Pittsburgh, Pittsburgh, PA, USA
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46
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Staes CJ, Beck AC, Chalkidis G, Scheese CH, Taft T, Guo JW, Newman MG, Kawamoto K, Sloss EA, McPherson JP. Design of an interface to communicate artificial intelligence-based prognosis for patients with advanced solid tumors: a user-centered approach. J Am Med Inform Assoc 2023; 31:174-187. [PMID: 37847666 PMCID: PMC10746322 DOI: 10.1093/jamia/ocad201] [Citation(s) in RCA: 2] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/23/2023] [Revised: 09/18/2023] [Accepted: 10/02/2023] [Indexed: 10/19/2023] Open
Abstract
OBJECTIVES To design an interface to support communication of machine learning (ML)-based prognosis for patients with advanced solid tumors, incorporating oncologists' needs and feedback throughout design. MATERIALS AND METHODS Using an interdisciplinary user-centered design approach, we performed 5 rounds of iterative design to refine an interface, involving expert review based on usability heuristics, input from a color-blind adult, and 13 individual semi-structured interviews with oncologists. Individual interviews included patient vignettes and a series of interfaces populated with representative patient data and predicted survival for each treatment decision point when a new line of therapy (LoT) was being considered. Ongoing feedback informed design decisions, and directed qualitative content analysis of interview transcripts was used to evaluate usability and identify enhancement requirements. RESULTS Design processes resulted in an interface with 7 sections, each addressing user-focused questions, supporting oncologists to "tell a story" as they discuss prognosis during a clinical encounter. The iteratively enhanced interface both triggered and reflected design decisions relevant when attempting to communicate ML-based prognosis, and exposed misassumptions. Clinicians requested enhancements that emphasized interpretability over explainability. Qualitative findings confirmed that previously identified issues were resolved and clarified necessary enhancements (eg, use months not days) and concerns about usability and trust (eg, address LoT received elsewhere). Appropriate use should be in the context of a conversation with an oncologist. CONCLUSION User-centered design, ongoing clinical input, and a visualization to communicate ML-related outcomes are important elements for designing any decision support tool enabled by artificial intelligence, particularly when communicating prognosis risk.
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Affiliation(s)
- Catherine J Staes
- College of Nursing, University of Utah, Salt Lake City, UT 84112, United States
- Department of Biomedical Informatics, School of Medicine, University of Utah, Salt Lake City, UT 84108, United States
| | - Anna C Beck
- Department of Internal Medicine, Huntsman Cancer Institute, University of Utah, Salt Lake City, UT 84112, United States
| | - George Chalkidis
- Healthcare IT Research Department, Center for Digital Services, Hitachi Ltd., Tokyo, Japan
| | - Carolyn H Scheese
- College of Nursing, University of Utah, Salt Lake City, UT 84112, United States
- Department of Biomedical Informatics, School of Medicine, University of Utah, Salt Lake City, UT 84108, United States
| | - Teresa Taft
- Department of Biomedical Informatics, School of Medicine, University of Utah, Salt Lake City, UT 84108, United States
| | - Jia-Wen Guo
- College of Nursing, University of Utah, Salt Lake City, UT 84112, United States
- Department of Biomedical Informatics, School of Medicine, University of Utah, Salt Lake City, UT 84108, United States
| | - Michael G Newman
- Department of Population Sciences, Huntsman Cancer Institute, Salt Lake City, UT 84112, United States
| | - Kensaku Kawamoto
- Department of Biomedical Informatics, School of Medicine, University of Utah, Salt Lake City, UT 84108, United States
| | - Elizabeth A Sloss
- College of Nursing, University of Utah, Salt Lake City, UT 84112, United States
| | - Jordan P McPherson
- Department of Pharmacotherapy, College of Pharmacy, University of Utah, Salt Lake City, UT 84108, United States
- Department of Pharmacy, Huntsman Cancer Institute, Salt Lake City, UT 84112, United States
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47
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Allende-Pérez S, García-Salamanca MF, Peña-Nieves A, Ramírez-Ibarguen A, Verástegui-Avilés E, Hernández-Lugo I, LeBlanc TW. Palliative Care in Patients With Hematological Malignancies. We Have a Long Way to Go…. Am J Hosp Palliat Care 2023; 40:1324-1330. [PMID: 36592366 DOI: 10.1177/10499091221149150] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/03/2023] Open
Abstract
Background: Patients with hematological malignancies have significant and diverse palliative care needs but are not usually referred to specialist palliative care services in a timely manner, if at all. Objective: To identify the characteristics of patients with hematological malignancies referred to the palliative care service in a tertiary hospital in Mexico City. Patients: Retrospective study including consecutive patients with hematological malignancies referred to palliative care services at Mexico's National Cancer Institute. Results: Between 2011 and 2019, 5,017 patients with hematological malignancies were evaluated for first time at Mexico's National Cancer Institute. Of these, 9.1% (n = 457) were referred to palliative care. Most were male (53.4%), with a median age of 58 years. The most frequent diagnosis was non-Hodgkin lymphoma (54.9%). The primary indication for referral to palliative care was for cases wherein chemotherapy was no longer an option (disease refractory to treatment, 42.8%). The median time of referral to the palliative care service occurred 11.2 months after the first evaluation at the National Cancer Institute and death occurred on median 1.1 months after the first palliative care evaluation. Conclusion: Patients with hematological neoplasms are infrequently referred to Palliative Care at the Institute (9.1%). We found no clear referral criteria for Palliative Care referral and note that hematologists' optimism regarding a cure can delay referrals. Clearly, we have a long way to go in improving the number of patients referred, and we still saw frequent referrals near the end of life, but the high rate of outpatient referrals is encouraging.
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Affiliation(s)
| | | | | | | | | | | | - Thomas W LeBlanc
- Division of Hematologic Malignancies and Cellular Therapy, Department of Medicine, Duke University School of Medicine, Durham, NC, USA
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48
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Uhelski ACR, Wheless M, Davis EJ, Agarwal R. Palliative care integration for patients on phase I cancer clinical trials. Curr Probl Cancer 2023; 47:101022. [PMID: 39492325 DOI: 10.1016/j.currproblcancer.2023.101022] [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: 07/24/2023] [Revised: 09/07/2023] [Accepted: 09/08/2023] [Indexed: 11/05/2024]
Abstract
Early integration of palliative care (PC) is recommended as standard of care for patients with advanced cancer. However, challenges remain for both medical oncologists and PC specialists in knowing how to best integrate PC within the dynamic landscape of cancer therapeutics and drug development. Over the last several years in oncology, the success of immunotherapy and molecularly targeted agents has led to a greater demand for novel agents and expansion of objectives of early phase clinical trials. This has in turn created more nuance when discussing prognosis and supporting patients with advanced disease and their caregivers. This review article presents the current literature to support the integration of PC within investigational oncology, as a mechanism to address the evolving needs of patients and caregivers, during and beyond participation on phase I cancer clinical trials.
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Affiliation(s)
| | - Margaret Wheless
- Department of Medicine, Vanderbilt University Medical Center, Nashville, TN
| | - Elizabeth J Davis
- Department of Medicine, Vanderbilt University Medical Center, Nashville, TN; Vanderbilt-Ingram Cancer Center, Nashville, TN
| | - Rajiv Agarwal
- Department of Medicine, Vanderbilt University Medical Center, Nashville, TN; Vanderbilt-Ingram Cancer Center, Nashville, TN.
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49
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Han HJ, Pilgrim CR, Buss MK. Integrating palliative care into the evolving landscape of oncology. Curr Probl Cancer 2023; 47:101013. [PMID: 37714795 DOI: 10.1016/j.currproblcancer.2023.101013] [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: 06/16/2023] [Accepted: 08/10/2023] [Indexed: 09/17/2023]
Abstract
Patients with cancer have many palliative care needs. Robust evidence supports the early integration of palliative care into the care of patients with advanced cancer. International organizations, such as the American Society of Clinical Oncology (ASCO) and the European Society for Medical Oncology (ESMO), have recommended early, longitudinal integration of palliative care into oncology care throughout the cancer trajectory. In this review, we pose a series of clinical questions related to the current state of early palliative care integration into oncology. We review the evidence to address each of these questions and highlight areas for further investigation. As cancer care continues to evolve, incorporating new treatment modalities and improving patient outcomes, we reflect on how to apply the existing evidence supporting early palliative care-oncology integration into this ever-changing therapeutic landscape and how specialty palliative care might adapt to meet the evolving needs of patients, caregivers, and the multidisciplinary oncology team.
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Affiliation(s)
- Harry J Han
- Section of Palliative Care, Division of General Medicine, Beth Israel Deaconess Medical Center and Harvard Medical School, Boston MA.
| | - Carol R Pilgrim
- Division of Palliative Care, Tufts Medical Center, Boston, MA
| | - Mary K Buss
- Division of Palliative Care, Tufts Medical Center, Boston, MA
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50
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O'Neill H, Robertson M, Kain D, Syed I, Pauli G, Parker CM, Digby GC. Improving Access and Timeliness of Early Palliative Care Specialist Assessment for Patients With Advanced Lung Cancer in a Rapid Assessment Clinic. J Palliat Med 2023; 26:1365-1373. [PMID: 37437122 DOI: 10.1089/jpm.2022.0544] [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] [Indexed: 07/14/2023] Open
Abstract
Background: Integrating palliative care in the management of patients with lung cancer improves quality of life, patient satisfaction, and overall survival. However, few patients receive timely palliative care consultation. The Lung Diagnostic Assessment Program (LDAP) in Southeastern Ontario is a multidisciplinary rapid assessment clinic that expedites the diagnosis and management of patients with suspected lung cancer. Objectives: We sought to increase the percentage of LDAP patients with stage IV lung cancer receiving palliative care consultation within three months of diagnosis. Design: We integrated a palliative care specialist in LDAP to facilitate in-person, same-visit consultation for patients with a new lung cancer diagnosis. Setting/Subjects: Five hundred fifty patients in a Canadian academic center (154 initial baseline, 104 COVID baseline, 292 post-palliative care integration). Measurements: Baseline data were established using retrospective chart review (February-June 2020 and December 2020-March 2021 due to COVID-19 pandemic). Data were collected prospectively to assess improvement (March-August 2021). Statistical Process Control charts assessed for special cause variation; chi-square tests assessed for differences between groups. Results: The percentage of patients with stage IV lung cancer seen by palliative care within three months increased from 21.8% (12/55) during early-COVID baseline to 49.2% (32/65) after palliative care integration (p < 0.006). Palliative care integration in LDAP reduced mean time from referral to consultation from 24.8 to 12.3 days, including same-day consultation for 15/32 (46.8%) patients with stage IV disease. Conclusions: Integrating palliative care specialists into LDAP improved the timeliness of palliative care assessment for patients with stage IV lung cancer.
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Affiliation(s)
- Hannah O'Neill
- Department of Medicine, Queen's University, Kingston, Ontario, Canada
| | - Madison Robertson
- Department of Medicine, Queen's University, Kingston, Ontario, Canada
| | - Danielle Kain
- Department of Medicine, Queen's University, Kingston, Ontario, Canada
- Division of Palliative Care, Queen's University, Kingston, Ontario, Canada
| | - Imran Syed
- School of Medicine, and Queen's University, Kingston, Ontario, Canada
| | - Griffin Pauli
- School of Medicine, and Queen's University, Kingston, Ontario, Canada
| | - Christopher M Parker
- Department of Medicine, Queen's University, Kingston, Ontario, Canada
- Division of Respirology, Queen's University, Kingston, Ontario, Canada
| | - Geneviève C Digby
- Department of Medicine, Queen's University, Kingston, Ontario, Canada
- Division of Respirology, Queen's University, Kingston, Ontario, Canada
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