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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 (? = -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.

SUBMITTER: Atkinson TM

PROVIDER: S-EPMC6362460 | biostudies-literature | 2019 Feb

REPOSITORIES: biostudies-literature

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

Atkinson Thomas M TM Schwartz Carolyn E CE Goldstein Leah L Garcia Iliana I Storfer Daniel F DF Li Yuelin Y Zhang Jie J Bochner Bernard H BH Rapkin Bruce D BD

Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research 20180831 2

<h4>Background</h4>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.<h4>Objectives</h4>To quantify patient response burden and identify its predictive factors.<h4>Methods</h4>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 int ...[more]

PMID: 30711068

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Project description:BACKGROUND:Mobile health (mHealth) technologies are increasingly used in various medical fields. However, the potential of mHealth to improve patient care in radiotherapy by acquiring electronic patient reported outcome measures (ePROMs) during treatment has been poorly studied so far. OBJECTIVE:The aim of this study was to develop and implement a novel Web app (PROMetheus) for patients undergoing radiotherapy. Herein, we have reported our experience with a focus on feasibility, patient acceptance, and a correlation of ePROMs with the clinical course of the patients. METHODS:In the period between January and June 2018, 21 patients used PROMetheus to score side effects, symptoms, and quality of life-related parameters during and after their treatment. Items of the Patient Reported Outcome version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) were chosen based on the primary site of disease, 27 items for head and neck tumors, 21 items for thoracic tumors, and 24 items for pelvic tumors. RESULTS:In total, 17 out of the 21 patients (81%) regularly submitted ePROMs and more than 2500 data points were acquired. An average of 5.2, 3.5, and 3.3 min was required to complete the head and neck, thorax, and pelvis questionnaires, respectively. ePROMS were able to detect the occurrence of both expected and unexpected side effects during the treatment. In addition, a gradual increase in the severity of side effects over the course the treatment and their remission afterward could be observed with ePROMs. In total, 9 out of the 17 patients (53%), mostly those with head and neck and thoracic cancers, reported PRO-CTCAE grade III or IV fatigue with severe impairments of activities of daily life. CONCLUSIONS:This study shows the successful implementation of an ePROM system and a high patient acceptance. ePROMs have a great potential to improve patient care in radiotherapy by providing a comprehensive documentation of symptoms and side effects, especially of ones that are otherwise underreported.

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

Publications

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

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