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Richter V, Broide E, Shalem T, Cohen DL, Khoury T, Mansour A, Naftali T, Mari A. Association Between Ethnicity and Treatment Preferences in Patients with Irritable Bowel Syndrome. Rambam Maimonides Med J 2025; 16:RMMJ.10542. [PMID: 40305867 PMCID: PMC12053809 DOI: 10.5041/rmmj.10542] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 05/02/2025] Open
Abstract
BACKGROUND AND AIMS Irritable bowel syndrome (IBS) poses a significant healthcare challenge, characterized by chronic gastrointestinal and extraintestinal symptoms impacting individuals' well-being. Treatment preferences may vary among patients from different ethnic groups, such as Arab and Jewish Israelis, necessitating tailored approaches. METHODS A bilingual (Hebrew/Arabic) questionnaire assessing patients' preferences regarding treatment goals was developed. It was administered online in Israeli IBS Facebook groups, as well as in two hospital gastroenterology clinics. RESULTS The study included 267 IBS patients (91 Arabs and 176 Jews). Demographic analysis revealed a higher proportion of females in both groups, with a significantly greater percentage among Jews compared to Arabs (84% versus 64.8%, respectively, P<0.001). The median age was 32 years for both Arabs and Jews (interquartile ranges of 26-42 and 24-62, respectively). Arabs exhibited higher rates of mixed-type IBS and constipation, while Jews had a higher prevalence of predominant diarrhea IBS. Arabs reported more bloating, higher rates of IBS-related comorbidities, and more medication usage. When asked to rate the importance of treatment goals, both populations preferred improvement in abdominal pain, bloating, and regular defecation, while assigning lower importance to improving difficulty in mental and/or physical aspects of intercourse, as well as arthralgia and myalgia. Arab patients assigned lower importance scores to various symptoms compared to their Jewish counterparts. CONCLUSION This study highlights the impact of ethnicity on patients' treatment goals. Understanding patients' preferences will enable tailoring an individual approach to each IBS patient.
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Affiliation(s)
- Vered Richter
- The Gonczarowski Family Institute of Gastroenterology and Liver Disease, Shamir (Assaf Harofeh) Medical Center, Zerifin, Israel
- Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel
| | - Efrat Broide
- Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel
- The Jecheskiel Sigi Gonczarowski Pediatric Gastroenterology Unit, Shamir (Assaf Harofeh) Medical Center, Zerifin, Israel
| | - Tzippora Shalem
- The Jecheskiel Sigi Gonczarowski Pediatric Gastroenterology Unit, Shamir (Assaf Harofeh) Medical Center, Zerifin, Israel
| | - Daniel L. Cohen
- The Gonczarowski Family Institute of Gastroenterology and Liver Disease, Shamir (Assaf Harofeh) Medical Center, Zerifin, Israel
| | - Tawfik Khoury
- Gastroenterology and Hepatology Institute, Nazareth Hospital EMMS, Nazareth, Israel
- The Azrieli Faculty of Medicine, Bar Ilan University, Israel
| | - Atallah Mansour
- Gastroenterology and Hepatology Institute, Nazareth Hospital EMMS, Nazareth, Israel
| | - Timna Naftali
- Department of Gastroenterology, Meir Medical Center, Kfar Saba, Israel
| | - Amir Mari
- Gastroenterology and Hepatology Institute, Nazareth Hospital EMMS, Nazareth, Israel
- The Azrieli Faculty of Medicine, Bar Ilan University, Israel
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Biondi-Zoccai G, Frati G, Peruzzi M, Bernardi M, Spadafora L, Tremoli E. Patient-Reported Outcome Measures in Cardiovascular Research and Care: PRO(M)s and CONS. J Cardiovasc Pharmacol 2025; 85:261-266. [PMID: 39847595 DOI: 10.1097/fjc.0000000000001669] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/28/2024] [Accepted: 01/03/2025] [Indexed: 01/25/2025]
Abstract
ABSTRACT Patient-reported outcome measures (PROMs) are vital tools in cardiovascular disease research and care, providing insights that complement traditional clinical outcomes such as mortality and morbidity. PROMs capture patient experiences with cardiovascular disease, such as quality of life, functional capacity, and emotional well-being, allowing clinicians to assess how interventions affect daily life. PROMs are integral to cardiovascular investigations and management, especially in chronic conditions and rehabilitation, where they inform on the impact of personalized care plans by tracking symptom progression and patient adherence. Selecting and applying to cardiovascular research and practice effective PROMs involves evaluating their validity, reliability, and sensitivity to change, with instruments such as the Kansas City Cardiomyopathy Questionnaire and the Seattle Angina Questionnaire widely used for heart failure and coronary artery disease, respectively. Implementing PROMs in real-world practice requires addressing challenges related to workflow integration and patient adherence, emphasizing their value in patient-centered care. As digital health advances, remote PROM data collection through mobile applications and wearable devices will enhance access to and extent of PROMs, and artificial intelligence-driven analytical tools will provide real-time, automated and plausible more poignant insights for personalized treatment. Future efforts should focus on culturally adapting PROMs for diverse populations to ensure global applicability. PROMs should also be established as essential components of innovative research and responsive, patient-centered cardiovascular care.
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Affiliation(s)
- Giuseppe Biondi-Zoccai
- Department of Medical-Surgical Sciences and Biotechnologies, Sapienza University of Rome, Latina, Italy
- Maria Cecilia Hospital, GVM Care & Research, Cotignola, Italy
| | - Giacomo Frati
- Department of Medical-Surgical Sciences and Biotechnologies, Sapienza University of Rome, Latina, Italy
- IRCCS NEUROMED, Pozzilli, Italy ; and
| | - Mariangela Peruzzi
- Maria Cecilia Hospital, GVM Care & Research, Cotignola, Italy
- Department of Clinical Internal, Anesthesiological and Cardiovascular Sciences, Sapienza University of Rome, Rome, Italy
| | - Marco Bernardi
- Department of Medical-Surgical Sciences and Biotechnologies, Sapienza University of Rome, Latina, Italy
| | - Luigi Spadafora
- Department of Medical-Surgical Sciences and Biotechnologies, Sapienza University of Rome, Latina, Italy
| | - Elena Tremoli
- Maria Cecilia Hospital, GVM Care & Research, Cotignola, Italy
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Leysen L, Marticic Giljevic K, Piccinin C, Shkodra M, Pe M, Petersen M, Apolone G, Brunelli C, Lombardo C, Velikova G, Gilbert A, Pravettoni G, Ciliberto G, Groenvold M, Ferrer M, Bos N, Pietrobon R, Couespel N, Caraceni A, Guren M, Sirven A, Vachon H. Evaluation of the psychometric properties of patient-reported outcome measures of health-related quality of life across the European cancer continuum: a systematic review protocol using COSMIN methodology. BMJ Open 2025; 15:e088716. [PMID: 40157731 PMCID: PMC11956298 DOI: 10.1136/bmjopen-2024-088716] [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] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/13/2024] [Accepted: 03/05/2025] [Indexed: 04/01/2025] Open
Abstract
INTRODUCTION Over the past decades, there has been increasing recognition that assessing patients with cancer's health-related quality of life (HRQoL) is pivotal to delivering optimal patient-centred healthcare. However, with the increasing number of patient-reported outcome measures (PROMs) available, it becomes more and more challenging to identify the most appropriate PROM to capture HRQoL. Therefore, the aim of this systematic review is to (1) identify all available PROMs assessing HRQoL across the European cancer continuum and (2) critically appraise, compare and summarise the psychometric properties of the identified PROMs. METHODS AND ANALYSIS Bibliographic databases MEDLINE and PubMed Central (through PubMed) and EMBASE (through Scopus) will be comprehensively searched from database inception until March 2024. Studies reporting on the measurement properties of PROMs assessing HRQoL throughout the European cancer continuum will be included. The evaluation of the psychometric properties, data extraction and data synthesis will be conducted according to the Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) methodology. Two reviewers will independently assess the methodological quality using the COSMIN risk of bias checklist and the COSMIN criteria for good measurement properties. Subsequently, findings will be qualitatively summarised. The Grading of Recommendations Assessment, Development and Evaluations (GRADE) guidelines will be used to grade and summarise the quality of the evidence. ETHICS AND DISSEMINATION Ethical clearance for this research is not required, as the systematic review will only use information from previously published research. The results of this review will be submitted for publication in a peer-reviewed journal and will be used to provide a set of evidence-based recommendations for a European project (EUonQOL), which aims at developing a new PROM (EUonQOL toolkit) to assess HRQoL across the European cancer continuum. Moreover, findings will be disseminated to a clinical audience and policymakers through conferences, supporting researchers and clinicians in choosing the best measure to evaluate HRQoL in patients with cancer and survivors in Europe. PROSPERO REGISTRATION NUMBER CRD42023418616.
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Affiliation(s)
- Laurence Leysen
- Quality of Life Department, European Organisation for Research and Treatment of Cancer, Brussels, Belgium
| | - Karla Marticic Giljevic
- Quality of Life Department, European Organisation for Research and Treatment of Cancer, Brussels, Belgium
| | - Claire Piccinin
- Quality of Life Department, European Organisation for Research and Treatment of Cancer, Brussels, Belgium
| | - Morena Shkodra
- Fondazione IRCCS Istituto Nazionale dei Tumori, Milano, Italy
| | - Madeline Pe
- Quality of Life Department, European Organisation for Research and Treatment of Cancer, Brussels, Belgium
| | - Morten Petersen
- The Research Unit, Department of Palliative Medicine, Bispebjerg Hospital, Copenhagen, Denmark
| | | | - Cinzia Brunelli
- Fondazione IRCCS Istituto Nazionale dei Tumori, Milano, Italy
| | - Claudio Lombardo
- Organisation of European Cancer Institutes - European Economic Interest Grouping, Rome, Italy
| | - Galina Velikova
- Leeds Institute of Medical Research, University of Leeds, Leeds, UK
| | | | - Gabriella Pravettoni
- Applied Research Division for Cognitive and Psychological Science, Istituto Europeo di Oncologia, Milano, Italy
- Department of Oncology and Hemato-oncology, Universita degli Studi di Milano, Milano, Lombardia, Italy
| | | | - Mogens Groenvold
- Palliative Medicine, University of Copenhagen, Kobenhavn, Region Hovedstaden, Denmark
| | - Montserrat Ferrer
- Hospital del Mar Research Institute, Barcelona, Spain
- CIBERESP, Madrid, Spain
| | - Nanne Bos
- , Netherlands Institute for Health Services Research (Nivel), Utrecht, The Netherlands
| | | | | | - Augusto Caraceni
- Palliative Care, Pain Therapy and Rehabilitation, Fondazione IRCCS Istituto Nazionale dei Tumori, Milano, Italy
| | | | | | - Hugo Vachon
- Quality of Life Department, European Organisation for Research and Treatment of Cancer, Brussels, Belgium
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O'Donald F, Calia C. The Process of Translation and Cross-Cultural Adaptation of Functional Assessment Tools for Dementia: A Systematized Review. Health Sci Rep 2025; 8:e70289. [PMID: 39777286 PMCID: PMC11705501 DOI: 10.1002/hsr2.70289] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/06/2024] [Revised: 11/05/2024] [Accepted: 11/28/2024] [Indexed: 01/11/2025] Open
Abstract
Background and Aims A decline in function related to impairment in cognitive abilities is required for diagnosing dementia. Cultural diversity influences everyday functioning, suggesting that functional assessment tools need to be culturally dependent. Therefore, this systematized review aimed to explore the translation and cross-cultural adaptation of functional assessment tools designed to support dementia diagnosis. Methods A systematic search of five electronic databases (CINAHL Plus, EMBASE, PubMed/MEDLINE, PsycINFO) was conducted from inception until September 2023. Quality assessment criteria were then utilized to evaluate the process of cross-cultural adaptation and psychometric properties of identified functional assessment tools. Results Fifteen studies relating to adapted functional assessment tools in 11 languages were identified. It was found that less than half of these studies fully adhered to established guidelines for the translation and cross-cultural adaptation of instruments. Regarding psychometric properties, while the internal consistency and reliability of included measures were generally strong, there was variability in evaluating other psychometric properties, notably structural validity, measurement error, and cross-cultural validity. Conclusions This review underscores the need for researchers and clinicians to follow standardized guidelines for translating and cross-culturally adapting functional assessment tools for dementia and ensuring the comprehensive evaluation of psychometric properties in cross-cultural settings. Researchers and clinicians should consider whether the psychometric properties and characteristics of an adapted functional activity measure are suitable for use in their population of interest.
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Affiliation(s)
- Freddie O'Donald
- School of Health in Social ScienceUniversity of EdinburghEdinburghUK
- Department of Clinical PsychologyNHS TaysideDundeeUK
| | - Clara Calia
- School of Health in Social ScienceUniversity of EdinburghEdinburghUK
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Al-Ebrahim SQ, Harrison J, Chen TF, Alzubaidi H, Mohammed MA. The Arabic medication-related burden quality of life (MRB-QoL) tool: Cross-cultural adaptation and content validation. EXPLORATORY RESEARCH IN CLINICAL AND SOCIAL PHARMACY 2024; 16:100523. [PMID: 39498226 PMCID: PMC11532770 DOI: 10.1016/j.rcsop.2024.100523] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/24/2024] [Revised: 09/05/2024] [Accepted: 10/09/2024] [Indexed: 11/07/2024] Open
Abstract
Background The Medication-Related Burden Quality of Life (MRB-QoL) is a 31-item valid and reliable patient-reported measure of medicine burden on functioning and well-being in people with long-term conditions (LTC). Objectives To translate, culturally adapt, and content validate the MRB-QoL into Arabic. Methods A rigorous approach to cross-cultural adaptation proposed by the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) guideline was followed. After 3 forward translations and 2 backward translations, a multidisciplinary expert panel assessed the content validity (CV) of the items through a 2-round e-modified Delphi method followed by two-step cognitive debriefings with patients with LTC using think-aloud and probing techniques. An item-content validity index (I-CVI) score of ≥0.78 was considered acceptable. The original questionnaire developers and other researchers, as members of the review committee, reviewed and approved the Arabic version. Results Five semantic and 3 cultural translation discrepancies were identified and resolved by rewording the items. The 2 backward translations did not reveal significant problems, and equivalence to the original tool was confirmed following committee review. The Arabic version showed acceptable CV parameters. E-modified Delphi involved 9 experts in round one and 7 in round 2. The I-CVI scores ranged from 0.67 to 1.0, and agreement was reached after 2 rounds. The CVI for the final version of the MRB-QoL was 0.96. Expert panel review showed that the MRB-QoL-Arabic version is relevant (CVI = 0.92), important (CVI = 0.97), clear (CVI = 0.98), and comprehensive in measuring the burden of medicines. Data from 5 cognitive interviews showed that items and concepts included in the Arabic version of the MRB-QoL are relevant to the targeted sample, clear, and easy to understand. Conclusion The MRB-QoL Arabic version was developed and content validated. However, further evaluation of its other psychometric properties is necessary before it can be utilized in clinical and research settings. Using this tool will enable a more accurate understanding of the effects of treatment burden on patient well-being, thereby guiding care toward minimally disruptive medicine.
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Affiliation(s)
- Sundos Q. Al-Ebrahim
- School of Pharmacy, Faculty of Medical and Health Sciences, The University of Auckland, Auckland, New Zealand
| | - Jeff Harrison
- School of Pharmacy, Faculty of Medical and Health Sciences, The University of Auckland, Auckland, New Zealand
| | - Timothy F. Chen
- Faculty of Pharmacy, The University of Sydney, Sydney, Australia
| | - Hamzah Alzubaidi
- College of Pharmacy, University of Sharjah, Sharjah, United Arab Emirates
| | - Mohammed A. Mohammed
- School of Pharmacy, Faculty of Medical and Health Sciences, The University of Auckland, Auckland, New Zealand
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Cruchinho P, López-Franco MD, Capelas ML, Almeida S, Bennett PM, Miranda da Silva M, Teixeira G, Nunes E, Lucas P, Gaspar F, On Behalf of the Handovers4SafeCare. Translation, Cross-Cultural Adaptation, and Validation of Measurement Instruments: A Practical Guideline for Novice Researchers. J Multidiscip Healthc 2024; 17:2701-2728. [PMID: 38840704 PMCID: PMC11151507 DOI: 10.2147/jmdh.s419714] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/18/2023] [Accepted: 03/21/2024] [Indexed: 06/07/2024] Open
Abstract
Cross-cultural validation of self-reported measurement instruments for research is a long and complex process, which involves specific risks of bias that could affect the research process and results. Furthermore, it requires researchers to have a wide range of technical knowledge about the translation, adaptation and pre-test aspects, their purposes and options, about the different psychometric properties, and the required evidence for their assessment and knowledge about the quantitative data processing and analysis using statistical software. This article aimed: 1) identify all guidelines and recommendations for translation, cross-cultural adaptation, and validation within the healthcare sciences; 2) describe the methodological approaches established in these guidelines for conducting translation, adaptation, and cross-cultural validation; and 3) provide a practical guideline featuring various methodological options for novice researchers involved in translating, adapting, and validating measurement instruments. Forty-two guidelines on translation, adaptation, or cross-cultural validation of measurement instruments were obtained from "CINAHL with Full Text" (via EBSCO) and "MEDLINE with Full Text". A content analysis was conducted to identify the similarities and differences in the methodological approaches recommended. Bases on these similarities and differences, we proposed an eight-step guideline that includes: a) forward translation; 2) synthesis of translations; 3) back translation; 4) harmonization; 5) pre-testing; 6) field testing; 7) psychometric validation, and 8) analysis of psychometric properties. It is a practical guideline because it provides extensive and comprehensive information on the methodological approaches available to researchers. This is the first methodological literature review carried out in the healthcare sciences regarding the methodological approaches recommended by existing guidelines.
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Affiliation(s)
- Paulo Cruchinho
- Nursing Research, Innovation and Development Center (CIDNUR) of Lisbon, Nursing School of Lisbon, Lisboa, Portugal
| | | | - Manuel Luís Capelas
- Universidade Católica Portuguesa, Faculty of Health Sciences and Nursing, Center for Interdisciplinary Research in Health (CIIS), Lisboa, Portugal
| | - Sofia Almeida
- Universidade Católica Portuguesa, Faculty of Health Sciences and Nursing, Center for Interdisciplinary Research in Health (CIIS), Porto, Portugal
| | - Phillippa May Bennett
- Center for English, Translation, and Anglo-Portuguese Studies (CETAPS), Lisboa, Portugal
- Faculty of Social Sciences and Humanities of the New University of Lisbon, Lisboa, Portugal
- Faculty of Arts and Humanities of the University of Coimbra, Department of Languages, Literatures and Cultures, Coimbra, Portugal
| | - Marcelle Miranda da Silva
- Nursing Research, Innovation and Development Center (CIDNUR) of Lisbon, Nursing School of Lisbon, Lisboa, Portugal
- Federal University of Rio de Janeiro, Anna Nery Nursing School, Rio de Janeiro, Brazil
| | - Gisela Teixeira
- Nursing Research, Innovation and Development Center (CIDNUR) of Lisbon, Nursing School of Lisbon, Lisboa, Portugal
| | - Elisabete Nunes
- Nursing Research, Innovation and Development Center (CIDNUR) of Lisbon, Nursing School of Lisbon, Lisboa, Portugal
| | - Pedro Lucas
- Nursing Research, Innovation and Development Center (CIDNUR) of Lisbon, Nursing School of Lisbon, Lisboa, Portugal
| | - Filomena Gaspar
- Nursing Research, Innovation and Development Center (CIDNUR) of Lisbon, Nursing School of Lisbon, Lisboa, Portugal
| | - On Behalf of the Handovers4SafeCare
- Nursing Research, Innovation and Development Center (CIDNUR) of Lisbon, Nursing School of Lisbon, Lisboa, Portugal
- CTS-464 Nursing and Innovation in Healthcare, University of Jaén, Jaén, Spain
- Universidade Católica Portuguesa, Faculty of Health Sciences and Nursing, Center for Interdisciplinary Research in Health (CIIS), Lisboa, Portugal
- Universidade Católica Portuguesa, Faculty of Health Sciences and Nursing, Center for Interdisciplinary Research in Health (CIIS), Porto, Portugal
- Center for English, Translation, and Anglo-Portuguese Studies (CETAPS), Lisboa, Portugal
- Faculty of Social Sciences and Humanities of the New University of Lisbon, Lisboa, Portugal
- Faculty of Arts and Humanities of the University of Coimbra, Department of Languages, Literatures and Cultures, Coimbra, Portugal
- Federal University of Rio de Janeiro, Anna Nery Nursing School, Rio de Janeiro, Brazil
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Jin H, He M, Xie W, Xiong Z, Deng Z, Li Y. Research Trends of Patient-Reported Outcome Measures in Orthopedic Medical Practices: A Bibliometric and Visualized Study. MEDICINA (KAUNAS, LITHUANIA) 2023; 59:1664. [PMID: 37763783 PMCID: PMC10536719 DOI: 10.3390/medicina59091664] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Received: 08/09/2023] [Revised: 08/31/2023] [Accepted: 09/12/2023] [Indexed: 09/29/2023]
Abstract
Background and Objectives: Patient-reported outcome measures (PROMs), also known as self-report measures, are critical tools for evaluating health outcomes by gathering information directly from patients without external interpretation. There has been a growing trend in the number of publications focusing on PROMs in orthopedic-related research. This study aims to identify the most valuable publications, influential journals, leading researchers, and core countries in this field using bibliometric analysis, providing researchers with an understanding of the current state and future trends of PROMs in orthopedic research. Materials and Methods: All PROMs in orthopedic-related publications from 1991 to 2022 were obtained from the WoSCC database. R software (version 4.2.2), VOSviewer (version 1.6.17), and Microsoft Excel (version 2303) were used for the bibliometric and visual analysis. Results: A total of 2273 publication records were found from 1991 to 2022. The results indicated that the United States (US) has made significant contributions to orthopedic-related PROMs. The majority of active research institutions are located in the US. J ORTHOP RES has published the most articles. J BONE JOINT SURG AM has the highest total citations. Conclusions: Our study provides a valuable reference for further exploration of the application of PROMs in orthopedics. PROMs have emerged as an increasingly popular area of research within the field of orthopedics, both in clinical practice and academic research. We conducted a bibliometric analysis in terms of journals, authors, countries, and institutions in this field. Additionally, we analyzed the potentialities and advantages of using PROMs in orthopedic research. There is an increasing trend towards using network-based or short message service (SMS)-based electronic patient-reported outcome measures (ePROMs) in orthopedic medical practices. It is anticipated that the role of PROMs in psychological and mental health research and telemedicine will continue to grow in importance.
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Affiliation(s)
- Hongfu Jin
- Department of Orthopedics, Xiangya Hospital, Central South University, Changsha 410017, China
- National Clinical Research Center for Geriatric Disorders, Xiangya Hospital, Central South University, Changsha 410017, China
| | - Miao He
- Department of Orthopedics, Xiangya Hospital, Central South University, Changsha 410017, China
- National Clinical Research Center for Geriatric Disorders, Xiangya Hospital, Central South University, Changsha 410017, China
| | - Wenqing Xie
- Department of Orthopedics, Xiangya Hospital, Central South University, Changsha 410017, China
- National Clinical Research Center for Geriatric Disorders, Xiangya Hospital, Central South University, Changsha 410017, China
| | - Zixuan Xiong
- Department of Orthopedics, Xiangya Hospital, Central South University, Changsha 410017, China
- Xiangya School of Medicine, Central South University, Changsha 410017, China
| | - Zhenhan Deng
- Department of Sports Medicine, The First Affiliated Hospital of Shenzhen University, Shenzhen Second People’s Hospital, Shenzhen 518037, China
| | - Yusheng Li
- Department of Orthopedics, Xiangya Hospital, Central South University, Changsha 410017, China
- National Clinical Research Center for Geriatric Disorders, Xiangya Hospital, Central South University, Changsha 410017, China
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Al-Ebrahim SQ, Harrison J, Chen TF, Mohammed MA. Cross-cultural adaptation and psychometric properties of patient-reported outcome measures in Arabic speaking countries: A scoping review. Res Social Adm Pharm 2023; 19:989-1006. [PMID: 36941158 DOI: 10.1016/j.sapharm.2023.03.007] [Citation(s) in RCA: 2] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/23/2022] [Revised: 02/22/2023] [Accepted: 03/07/2023] [Indexed: 03/14/2023]
Abstract
BACKGROUND Patient-reported outcome measures (PROMs) are increasingly recognized as an indicator of healthcare quality and safety. Over the past decades, there has been a growing interest in using PROMs in Arabic-speaking populations. However, there is a paucity of data regarding the quality of their cross-cultural adaptation (CCA) and measurement properties. OBJECTIVES To identify PROMs that have been developed, validated or cross-culturally adapted to Arabic and evaluate methodological qualities of CCA and measurement properties. METHODS MEDLINE, EMBASE, CINAHL, PsycINFO, IPA, and ISI Web of Science were searched using search terms 'PROMs', 'Arabic countries', 'CCA', and 'psychometric properties'. Measurement properties were evaluated using COSMIN quality criteria and CCA quality was assessed using the Oliveria rating method. RESULTS This review included 260 studies with 317 PROMs, focusing on psychometric testing (83.8%), CCA (75.8%), utilizing PROMs as outcome measures (13.4%), and developing PROMs (2.3%). Out of the 201 cross-culturally adapted PROMs, forward translation was the most frequently reported component of CCA (n = 178), followed by back translation (n = 174). Out of the 235 PROMs that reported measurement properties, internal consistency was the most frequently reported measurement property (n = 214), followed by reliability (n = 160) and hypotheses testing (n = 143). Other measurement properties were less reported, including responsiveness (n = 36), criterion validity (n = 22), measurement error (n = 12), and cross-cultural validity (n = 10). The strongest measurement property was hypotheses testing (n = 143), followed by reliability (n = 132). CONCLUSION There are several caveats regarding the quality of CCA and measurement properties of PROMs included in this review. Only 1 out of 317 Arabic PROMs met CCA and psychometric optimal quality criteria. Therefore, there is a need to improve the methodological quality of CCA and measurement properties of PROMs. This review provides valuable information for researchers and clinicians when choosing PROMs for practice and research. There were only 5 treatment-specific PROMs, indicating the necessity for more research focusing on development and CCA of such measures.
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Affiliation(s)
- Sundos Q Al-Ebrahim
- School of Pharmacy, Faculty of Medical and Health Sciences, The University of Auckland, Auckland, New Zealand.
| | - Jeff Harrison
- School of Pharmacy, Faculty of Medical and Health Sciences, The University of Auckland, Auckland, New Zealand.
| | - Timothy F Chen
- Faculty of Pharmacy, The University of Sydney, Sydney, Australia.
| | - Mohammed A Mohammed
- School of Pharmacy, Faculty of Medical and Health Sciences, The University of Auckland, Auckland, New Zealand.
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Naftali T, Richter V, Mari A, Khoury T, Shirin H, Broide E. Do inflammatory bowel disease patient preferences from treatment outcomes differ by ethnicity and gender? A cross-sectional observational study. World J Clin Cases 2022; 10:12899-12908. [PMID: 36569023 PMCID: PMC9782943 DOI: 10.12998/wjcc.v10.i35.12899] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/08/2022] [Revised: 05/05/2022] [Accepted: 08/21/2022] [Indexed: 12/14/2022] Open
Abstract
BACKGROUND Inflammatory bowel disease (IBD) patients' expectations of treatment outcomes may differ by ethnicity. AIM To investigate treatment preferences of Jewish and Arabs patients. METHODS This prospective survey ranked outcomes treatment preferences among Arab IBD patients, based on the 10 IBD-disk items compared to historical data of Jews. An anonymous questionnaire in either Arabic or Hebrew was distributed among IBD patients. Patients were required to rank 10 statements describing different aspects of IBD according to their importance to the patients as treatment goals. Answers were compared to the answers of a historical group of Jewish patients. RESULTS IBD-disk items of 121 Arabs were compared to 240 Jewish patients. The Jewish patients included more females, [151 (62.9%) vs 52 (43.3%); P < 0.001], higher education level (P = 0.02), more urban residence [188 (78.3%) vs 54 (45.4%); P < 0.001], less unemployment [52 (21.7%) vs 41 (33.9%); P = 0.012], higher income level (P < 0.001), and more in a partnership [162 (67.8%) vs 55 (45.4%); P < 0.001]. Expectations regarding disease symptoms: abdominal pain, energy, and regular defecation ranked highest for both groups. Arabs gave significantly lower rankings (range 4.29-6.69) than Jewish patients (range 6.25-9.03) regarding all items, except for body image. Compared to Arab women, Jewish women attached higher priority to abdominal pain, energy, education/work, sleep, and joint pain. Multivariable regression analysis revealed that higher patient preferences were associated with Jewish ethnicity (OR 4.77; 95%CI 2.36-9.61, P < 0.001) and disease activity. The more active the disease, the greater the odds ratio for higher ranking of the questionnaire items (1-2 attacks per year: OR 2.13; 95%CI 1.02-4.45, P = 0.043; and primarily active disease: OR 5.29; 95%CI 2.30-12.18, P < 0.001). Factors inversely associated with higher patient preference were male gender (OR 0.5; 95%CI 0.271-0.935, P = 0.030), UC (OR 0.444; 95%CI 0.241-0.819, P = 0.009), and above average income level (OR 0.267; 95%CI: 0.124-0.577, P = 0.001). CONCLUSION The highest priority for treatment outcomes was symptom relief., Patients preferences were impacted by ethnicity, gender, and socio-economic disparity. Understanding patients' priorities may improve communication and enable a personalized approach.
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Affiliation(s)
- Timna Naftali
- Institute of Gastroenterology, Meir Medical Center, Kfar-saba 4428164, Israel
| | - Vered Richter
- Department of Gastroenterology, Shamir Medical Center, Zerifin 70300, Israel
| | - Amir Mari
- Department of Gastroenterology, Nazareth Hospital, Nazareth 16100, Israel
| | - Tawfik Khoury
- Department of Gastroenterology, Nazareth Hospital, Nazareth 16100, Israel
| | - Haim Shirin
- Shamir (Assaf Harofeh) Medical Center, Affiliated to Sackler School of Medicine, The Gonczarowski Family Institute of Gastroenterology and Liver Diseases, Tel Aviv University, Zerifin 70300, Israel
| | - Efrat Broide
- Pediatric Gastroenterology Unit, Asaf Harofeh Medical Center, Zrifin 70300, Israel
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Marsh SE, Truter I. Improving health-related quality of life instrument translation into South African languages. S Afr Fam Pract (2004) 2021; 63:e1-e11. [PMID: 34797093 PMCID: PMC8603070 DOI: 10.4102/safp.v63i1.5361] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/09/2021] [Revised: 09/06/2021] [Accepted: 09/08/2021] [Indexed: 11/21/2022] Open
Abstract
Background Most health-related quality of life (HRQoL) instruments have been created in English, which can influence their reliability and validity in non-English speaking populations. This study assessed the translation methodology of HRQoL instruments that have been used and translated into South African languages and which could be applied in cost-utility analyses (CUAs). Methods A 2019 systematic review was updated with searches conducted in Medline, the Web of ScienceTM (WoSTM) Core Collection and the South African SciELO collection via the WoSTM Platform. Additional searches in Sabinet’s African Journals database and on instrument developers’ webpages were performed. Only HRQoL instruments suitable for CUAs were included. Articles reporting at least one element of the translation methods were included. Established good practice principles were used to evaluate the translation methodology. Results Within the 39 publications identified, a dozen translated instruments have been used in South Africa. All instruments used were translated from English and none had originally been created in South Africa. Instrument developers’ translations were used more than study investigators’ translations. Almost all instrument developer versions met the full translation criteria. No investigator translated instrument met the full translation criteria primarily because recommendations on forward and back translations were not followed. However, this analysis was hampered by a lack of methodological reporting details. The most used instruments, which also had the most translated versions available, were the EQ-5D-3L, SF-36 version 2 and EORTC QLQ-C30. Conclusion Instrument developers’ translations more often met recommended translation methodology compared with investigators’ versions. The EQ-5D-3L may be best suited for South African economic evaluations and for use in clinical practice, but further work may be needed.
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Affiliation(s)
- Sophia E Marsh
- Department of Pharmacy, Faculty of Health Sciences, Nelson Mandela University, Gqeberha.
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Patient-reported outcome measures in Arabic-speaking populations: a systematic review. Qual Life Res 2021; 31:1309-1320. [PMID: 34709559 DOI: 10.1007/s11136-021-03010-0] [Citation(s) in RCA: 6] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 09/30/2021] [Indexed: 10/20/2022]
Abstract
PURPOSE This research aimed, first, to identify, summarize, and synthesize the studies reporting the development, translation, and/or psychometric evaluation of PROMs in Arabic-speaking populations and, second, to evaluate the psychometric properties and the translation process of a sample 26 PROMs. METHODS In 2019, PubMed, Web of Science, and SCOPUS were searched for studies reporting the development, translation, or cross-cultural adaptation of patient-reported outcome measures in Arabic-speaking populations, and those including the assessment of one or more psychometric properties as PROMs (including validity, reliability, responsiveness, interpretability) in our target populations were included. The review protocol registration number is CRD42018088991. RESULTS The search strategy outlined above yielded a total of 3179 titles in the three databases. Of these, 174 English language studies met the inclusion criteria. One hundred thirty-six PROMs were identified. The methodological quality and translation process of PROMs reported by at least two studies (26 PROM instruments, 63 studies) were examined. Internal consistency, reliability, and construct validity were the most frequently reported psychometric properties. Structural validity, cross-cultural validity, responsiveness, and measurement error were largely unreported. The process of developing at least two independent forward translations and back translation of the instrument into the source language were reported by 32 and 43 studies, respectively. CONCLUSION There is a need for further investigation of measurement properties of Arabic PROMs measures before routine use can be recommended in clinical practice.
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Shunmugasundaram C, Dhillon HM, Butow PN, Sundaresan P, Rutherford C. Enabling cross-cultural data pooling in trials: linguistic validation of head and neck cancer measures for Indian patients. Qual Life Res 2021; 30:2649-2661. [PMID: 33797687 DOI: 10.1007/s11136-021-02837-x] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 03/25/2021] [Indexed: 11/28/2022]
Abstract
BACKGROUND Head and neck cancers (HNC) and their treatments cause dysfunction and distress. Ongoing psychological assessment using disease-specific patient-reported measures may optimize clinical decision-making, facilitate interventions to reduce psychosocial burden. As most such measures are developed in English, non-English speaking patients are disadvantaged. This study translated HNC-specific measures (Body Image Scale, Patient Concerns Inventory, Zung's Self-Rating Anxiety and Depression Scales and Patient Health Questionnaire-9) into three Indian languages (Hindi, Tamil and Telugu) and linguistically validated them. METHODS Translation followed established guidelines on translation and linguistic validation of measures. Process involved two independent forward translations, reconciliation, two independent backward translations by bilingual experts, and cognitive debriefing interviews with nine healthcare professionals (HCPs) and 29 HNC patients. Translated versions were compared with the original versions for semantic, cultural and conceptual equivalence. RESULTS Overall, 17 Hindi items, 19 Tamil items and 13 Telugu items were identified to have semantic, cultural and/or conceptual issues. These were resolved to achieve equivalence with the original measures. Interviews with HCPs indicated that equivalent terms for words such as anxiety, panicky, sexuality, and self-conscious might be difficult to understand. Interviews with patients indicated all items were understandable, easy, sensitive, unambiguous and relevant. Hence, no further revisions were made. CONCLUSIONS The translated Hindi, Tamil and Telugu versions of the Body image scale, Patient concerns inventory, Zung's self-rating anxiety and depression scales and Patient health questionnaire-9 measures are conceptually and linguistically validated and equivalent with the original English versions. Psychometric validation of these measures with relevant patient populations is needed.
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Affiliation(s)
- Chindhu Shunmugasundaram
- Centre for Medical Psychology and Evidence-based Decision-making, School of Psychology, Faculty of Science, University of Sydney, Sydney, NSW, Australia. .,Psycho-Oncology Cooperative Research Group, University of Sydney, Sydney, Australia.
| | - Haryana M Dhillon
- Centre for Medical Psychology and Evidence-based Decision-making, School of Psychology, Faculty of Science, University of Sydney, Sydney, NSW, Australia.,Psycho-Oncology Cooperative Research Group, University of Sydney, Sydney, Australia
| | - Phyllis N Butow
- Centre for Medical Psychology and Evidence-based Decision-making, School of Psychology, Faculty of Science, University of Sydney, Sydney, NSW, Australia.,Psycho-Oncology Cooperative Research Group, University of Sydney, Sydney, Australia
| | - Puma Sundaresan
- Radiation Oncology Network, Western Sydney Local Health District, Sydney, Australia.,Sydney Medical School, University of Sydney, Sydney, Australia
| | - Claudia Rutherford
- Quality of Life Office, School of Psychology, Faculty of Science, University of Sydney, Sydney, Australia.,Sydney Nursing School, Cancer Nursing Research Unit (CNRU), University of Sydney, Sydney, Australia
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Faria LF, Reis ST, Leite KR, da Cruz JAS, Pimenta R, Viana NI, Amaral GQ, Santos GAGD, Ilias D, Fakhouri F, Xavier G, Srougi M, Passerotti CC. Digital application developed to evaluate functional results following robot-assisted radical prostatectomy: App for prostate cancer. COMPUTER METHODS AND PROGRAMS IN BIOMEDICINE 2020; 197:105683. [PMID: 32777664 DOI: 10.1016/j.cmpb.2020.105683] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 03/25/2020] [Accepted: 07/27/2020] [Indexed: 06/11/2023]
Abstract
INTRODUCTION Mobile applications ("apps") developed for smartphones and tablets are increasingly used in healthcare, allowing remote patient support or promoting self-health care. Prostate cancer (PC) screening allows for early-stage PC diagnosis, resulting in high rates of curative procedures such as radical prostatectomy. The main complications following surgery are urinary incontinence and erectile dysfunction. However, the exact numbers related to these morbidities are often missing due to brief interviews during consultations in the medical office. Therefore, the aim of this study was to create an app to determine whether response rates to pre- and post-surgical PC questionnaires will increase. METHODS The app was built using the IONIC framework system and provided to patients through a prospective randomized study. We included 100 patients divided into two groups: 1. first group used the app (n = 50); and 2. second group responded via validated printed questionnaires (control group) (n = 50). All patients received discharge counseling to respond to the questionnaires 1, 3, 6 and 12 months after the procedure. The app group received verbal guidance on how monitoring would occur, received an SMS containing a username and password providing access to the system and received reminder alerts to respond to the questionnaires. RESULTS The new app is called UroHealth and is available for download in the Apple App Store or at www.urohealth.com.br. When we evaluated the response rates, we found that 42.9% of the patients answered the preoperative questionnaire in the app group, while 16% responded in the control group (p = 0.003). By the end of the follow-up, we found that 24.5% of the patients answered the questionnaire in the app group, while 4% responded in the control group (p = 0.003). CONCLUSION This app enabled almost 6 times more patients to answer long-term follow-up questions after surgical procedures, providing high-quality information regarding morbidity related to treatment. Although our initial results indicate that this app may become a useful tool in obtaining more frequent and realistic answers, thus helping to improve surgical techniques, other ways of reaching the patient should be tested to achieve higher response rates.
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Affiliation(s)
- Leandro F Faria
- Laboratory of Medical Investigation (LIM55), Urology Department, Faculdade de Medicina da Universidade de São Paulo (FMUSP), São Paulo 01246-903, Brazil.
| | - Sabrina T Reis
- Laboratory of Medical Investigation (LIM55), Urology Department, Faculdade de Medicina da Universidade de São Paulo (FMUSP), São Paulo 01246-903, Brazil; Faculdade Atenas - Campus Passos, Minas Gerais, 37900-380, Brazil.
| | - Katia R Leite
- Laboratory of Medical Investigation (LIM55), Urology Department, Faculdade de Medicina da Universidade de São Paulo (FMUSP), São Paulo 01246-903, Brazil.
| | | | - Ruan Pimenta
- Laboratory of Medical Investigation (LIM55), Urology Department, Faculdade de Medicina da Universidade de São Paulo (FMUSP), São Paulo 01246-903, Brazil.
| | - Nayara I Viana
- Laboratory of Medical Investigation (LIM55), Urology Department, Faculdade de Medicina da Universidade de São Paulo (FMUSP), São Paulo 01246-903, Brazil.
| | - Gabriela Q Amaral
- Laboratory of Medical Investigation (LIM55), Urology Department, Faculdade de Medicina da Universidade de São Paulo (FMUSP), São Paulo 01246-903, Brazil.
| | - Gabriel A G D Santos
- Laboratory of Medical Investigation (LIM55), Urology Department, Faculdade de Medicina da Universidade de São Paulo (FMUSP), São Paulo 01246-903, Brazil.
| | - Daniel Ilias
- Center for Robotic Surgery, Hospital Alemão Oswaldo Cruz, São Paulo 01327-001, Brazil.
| | - Felipe Fakhouri
- Center for Robotic Surgery, Hospital Alemão Oswaldo Cruz, São Paulo 01327-001, Brazil.
| | - Geraldo Xavier
- Center for Robotic Surgery, Hospital Alemão Oswaldo Cruz, São Paulo 01327-001, Brazil.
| | - Miguel Srougi
- Laboratory of Medical Investigation (LIM55), Urology Department, Faculdade de Medicina da Universidade de São Paulo (FMUSP), São Paulo 01246-903, Brazil.
| | - Carlo Camargo Passerotti
- Laboratory of Medical Investigation (LIM55), Urology Department, Faculdade de Medicina da Universidade de São Paulo (FMUSP), São Paulo 01246-903, Brazil; Center for Robotic Surgery, Hospital Alemão Oswaldo Cruz, São Paulo 01327-001, Brazil.
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Guo JW, Chiang HY, Beck SL. Cross-Cultural Translation of the nChinese Version of Pain Care Quality Surveys (C-PainCQ). Asian Pac Isl Nurs J 2020; 4:165-172. [PMID: 32055684 PMCID: PMC7014383 DOI: 10.31372/20190404.1072] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/30/2022] Open
Abstract
Health disparities in pain care continue to exist among non-English-speaking Chinese-Americans. The Pain Care Quality?© (PainCQ) surveys, a valid instrument measuring the quality of pain care from the patient’s perspective, is available only in English currently. This study generated a Chinese version of the PainCQ (C-PainCQ) following a cross-cultural translation approach to address health equity in pain care. A multicultural, bilingual expert team produced a good quality, prefinal version of C-PainCQ. Chinese-speaking patients (n = 55) evaluated conceptual and content equivalence while bilingual participants (n = 13) reviewed semantic equivalence of C-PainCQ items. Feedback from participants, including adding a new item related to education on medication compliance, was used to revise the tool. This C-PainCQ is ready for future research to examine the reliability and construct validity with a large sample of Chinese-speaking patients.
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