scholarly journals Development, content validity, and cross-cultural adaptation of a patient-reported outcome measure for real-time symptom assessment in irritable bowel syndrome

2017 ◽  
Vol 30 (3) ◽  
pp. e13244 ◽  
Author(s):  
L. Vork ◽  
D. Keszthelyi ◽  
Z. Mujagic ◽  
J. W. Kruimel ◽  
C. Leue ◽  
...  
Keyword(s):  
Irritable Bowel Syndrome ◽  
Cultural Adaptation ◽  
Outcome Measure ◽  
Symptom Assessment ◽  
Patient Reported Outcome ◽  
Cross Cultural ◽  
Cross Cultural Adaptation ◽  
Patient Reported Outcome Measure ◽  
Patient Reported ◽  
Irritable Bowel

scholarly journals Implementing a Patient-Reported Outcome Measure for Hemodialysis Patients in Routine Clinical Care

2020 ◽  
Vol 15 (9) ◽  
pp. 1299-1309 ◽  
Author(s):  
Jenna M. Evans ◽  
Alysha Glazer ◽  
Rebecca Lum ◽  
Esti Heale ◽  
Marnie MacKinnon ◽  
...  
Keyword(s):  
Outcome Measure ◽  
Symptom Burden ◽  
Symptom Assessment ◽  
Patient Reported Outcome ◽  
Assessment System ◽  
Edmonton Symptom Assessment System ◽  
Patient Reported Outcome Measure ◽  
Symptom Screening ◽  
Patient Reported ◽  
Patient Provider Communication

Background and objectivesThe Edmonton Symptom Assessment System Revised: Renal is a patient-reported outcome measure used to assess physical and psychosocial symptom burden in patients treated with maintenance dialysis. Studies of patient-reported outcome measures suggest the need for deeper understanding of how to optimize their implementation and use. This study examines patient and provider perspectives of the implementation process and the influence of the Edmonton Symptom Assessment System Revised: Renal on symptom management, patient-provider communication, and interdisciplinary communication.Design, setting, participants, & measurements Eight in-facility hemodialysis programs in Ontario, Canada, assessed patients using the Edmonton Symptom Assessment System Revised: Renal every 4–6 weeks for 1 year. Screening and completion rates were tracked, and pre- and postimplementation surveys and midimplementation interviews were conducted with patients and providers. A chart audit was conducted 12 months postimplementation.ResultsIn total, 1459 patients completed the Edmonton Symptom Assessment System Revised: Renal; 58% of eligible patients completed the preimplementation survey (n=718), and 56% of patients who completed the Edmonton Symptom Assessment System Revised: Renal at least once completed the postimplementation survey (n=569). Provider survey response rates were 71% (n=514) and 54% (n=319), respectively. Nine patients/caregivers from three sites and 48 providers from all sites participated in interviews. A total of 1207 charts were audited. Seven of eight sites had mean screening rates over 80%, suggesting that routine use of the Edmonton Symptom Assessment System Revised: Renal in clinical practice is feasible. However, the multiple data sources painted an inconsistent picture of the value and effect of the Edmonton Symptom Assessment System Revised: Renal. The Edmonton Symptom Assessment System Revised: Renal standardized symptom screening processes across providers and sites; improved patient and provider symptom awareness, particularly for psychosocial symptoms; and empowered patients to raise issues with providers. Yet, there was little, if any, statistically significant improvement in the metrics used to assess symptom management, patient-provider communication, and interdisciplinary communication.ConclusionsThe Edmonton Symptom Assessment System Revised: Renal patient-reported outcome measure may be useful to standardize symptom screening, enhance awareness of psychosocial symptoms among patients and providers, and empower patients rather than to reduce symptom burden.

scholarly journals Toward Ensuring Health Equity: Readability and Cultural Equivalence of OMERACT Patient-reported Outcome Measures

2015 ◽  
Vol 42 (12) ◽  
pp. 2448-2459 ◽  
Author(s):  
Jennifer Petkovic ◽  
Jonathan Epstein ◽  
Rachelle Buchbinder ◽  
Vivian Welch ◽  
Tamara Rader ◽  
...  
Keyword(s):  
Outcome Measures ◽  
Cultural Adaptation ◽  
Working Group ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Cross Cultural ◽  
Low Literacy ◽  
Cross Cultural Adaptation ◽  
Patient Reported

Objective.The goal of the Outcome Measures in Rheumatology (OMERACT) 12 (2014) equity working group was to determine whether and how comprehensibility of patient-reported outcome measures (PROM) should be assessed, to ensure suitability for people with low literacy and differing cultures.Methods.The English, Dutch, French, and Turkish Health Assessment Questionnaires and English and French Osteoarthritis Knee and Hip Quality of Life questionnaires were evaluated by applying 3 readability formulas: Flesch Reading Ease, Flesch-Kincaid grade level, and Simple Measure of Gobbledygook; and a new tool, the Evaluative Linguistic Framework for Questionnaires, developed to assess text quality of questionnaires. We also considered a study assessing cross-cultural adaptation with/without back-translation and/or expert committee. The results of this preconference work were presented to the equity working group participants to gain their perspectives on the importance of comprehensibility and cross-cultural adaptation for PROM.Results.Thirty-one OMERACT delegates attended the equity session. Twenty-six participants agreed that PROM should be assessed for comprehensibility and for use of suitable methods (4 abstained, 1 no). Twenty-two participants agreed that cultural equivalency of PROM should be assessed and suitable methods used (7 abstained, 2 no). Special interest group participants identified challenges with cross-cultural adaptation including resources required, and suggested patient involvement for improving translation and adaptation.Conclusion.Future work will include consensus exercises on what methods are required to ensure PROM are appropriate for people with low literacy and different cultures.

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