Perceptions of response burden associated with completion of patient-reported outcome assessments in oncology Journal Article


Authors: Atkinson, T. M.; Schwartz, C. E.; Goldstein, L.; Garcia, I.; Storfer, D. F.; Li, Y.; Zhang, J.; Bochner, B. H.; Rapkin, B. D.
Article Title: Perceptions of response burden associated with completion of patient-reported outcome assessments in oncology
Abstract: Background: Patient response burden is often raised as a human subject concern in consideration of the length or complexity of patient-reported outcome (PRO) instruments used in oncology. Objectives: To quantify patient response burden and identify its predictive factors. Methods: Data were collected presurgically during a prospective trial that used a comprehensive symptom and health-related quality-of-life (HRQOL) PRO assessment. A subset of patients also completed HRQOL interviews. Response burden was captured using an internally developed six-item instrument. Demographic and clinical characteristics as well as HRQOL scores were examined as potential predictors using hierarchical regression. Response burden was used to predict participant dropout at the first follow-up interval. Results: A total of 275 patients (mean age 67.5 years; 23.6% female) completed surveys (n = 126) or surveys in addition to interviews (n = 149). Patients experienced low response burden (mean 12.19 ± 11.65). Repetitive questions were identified by 60 patients (21.8%), whereas 31.6% indicated that additional information should be gathered; 35 patients (12.7%) identified repetitive questions and expressed a desire for additional items. Low self-reported cognitive function was a significant predictor of higher response burden (β = −0.20; t(270) = −3.38; P = 0.01; model-adjusted R 2 = 0.04). Response burden was not a significant predictor of study dropout. Conclusions: Despite completing a large battery of PRO measures and interviews, patients reported minimal response burden, with nearly one-third expressing that more questions should have been asked. Patients with lower cognitive function are more likely to report higher response burden when completing PRO measures. Further examination of patient characteristics related to response burden may reveal useful pathways for tailoring patient-centered interventions. © 2019 ISPOR–The Professional Society for Health Economics and Outcomes Research
Keywords: aged; major clinical study; follow up; prospective study; neoplasms; demography; patient identification; questionnaire; cognition; interview; patient-reported outcomes; personal experience; perception; patient-reported outcome; quality of life assessment; human; male; female; priority journal; article; patient-centered outcomes; clinical outcome assessments; response burden
Journal Title: Value in Health
Volume: 22
Issue: 2
ISSN: 1098-3015
Publisher: Elsevier Science, Inc.  
Date Published: 2019-02-01
Start Page: 225
End Page: 230
Language: English
DOI: 10.1016/j.jval.2018.07.875
PUBMED: 30711068
PROVIDER: scopus
PMCID: PMC6362460
DOI/URL:
Notes: Source: Scopus
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MSK Authors
  1. Yuelin Li
    139 Li
  2. Bernard Bochner
    324 Bochner