Perceptions of Response Burden Associated with Completion of Patient-Reported Outcome Assessments in Oncology

Thomas M. Atkinson, Carolyn E. Schwartz, Leah Goldstein, Iliana Garcia, Daniel F. Storfer, Yuelin Li, Jie Zhang, Bernard H. Bochner, Bruce D. Rapkin

Research output: Contribution to journalArticle

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 R2 = 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.

Original languageEnglish (US)
JournalValue in Health
DOIs
StateAccepted/In press - Jan 1 2018

Fingerprint

Patient Outcome Assessment
Quality of Life
Interviews
Cognition
Patient Reported Outcome Measures

Keywords

  • clinical outcome assessments
  • neoplasms
  • patient-centered outcomes
  • patient-reported outcomes
  • response burden

ASJC Scopus subject areas

  • Health Policy
  • Public Health, Environmental and Occupational Health

Cite this

Perceptions of Response Burden Associated with Completion of Patient-Reported Outcome Assessments in Oncology. / Atkinson, Thomas M.; Schwartz, Carolyn E.; Goldstein, Leah; Garcia, Iliana; Storfer, Daniel F.; Li, Yuelin; Zhang, Jie; Bochner, Bernard H.; Rapkin, Bruce D.

In: Value in Health, 01.01.2018.

Research output: Contribution to journalArticle

Atkinson, Thomas M. ; Schwartz, Carolyn E. ; Goldstein, Leah ; Garcia, Iliana ; Storfer, Daniel F. ; Li, Yuelin ; Zhang, Jie ; Bochner, Bernard H. ; Rapkin, Bruce D. / Perceptions of Response Burden Associated with Completion of Patient-Reported Outcome Assessments in Oncology. In: Value in Health. 2018.
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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 R2 = 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.",
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AU - Atkinson, Thomas M.

AU - Schwartz, Carolyn E.

AU - Goldstein, Leah

AU - Garcia, Iliana

AU - Storfer, Daniel F.

AU - Li, Yuelin

AU - Zhang, Jie

AU - Bochner, Bernard H.

AU - Rapkin, Bruce D.

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AB - 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 R2 = 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.

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