Truthfulness in patient-reported outcomes: factors affecting patients’ responses and impact on data quality
Open Access
- 1 June 2019
- journal article
- review article
- Published by Taylor & Francis Ltd in Patient Related Outcome Measures
- Vol. ume 10, 171-186
- https://doi.org/10.2147/prom.s178344
Abstract
The use of patient-reported outcome (PRO) measures in research and clinical care has expanded dramatically, reflective of an increasing recognition of patient-centeredness as an important aspect of high-quality health care. Given this rapid expansion, ensuring that data collected using PRO measures is of high quality is crucial for their continued successful application. Because of the subjective nature of the outcomes assessed, there are many factors that may influence patients’ responses and thus challenge the overall quality of the data. In this review, we discuss the multiple factors that may affect patients’ responses on PRO measures. These factors may arise during instrument development and administration or secondary to patient-level response behaviors. We further examine the relevant literature to delineate how these factors may impact data quality and review methods for accounting for these factors. Consideration of such factors is critical to ensuring data collected truthfully reflects patients’ evaluations and provides accurate conclusions.Keywords
This publication has 62 references indexed in Scilit:
- The case for an international patient-reported outcomes measurement information system (PROMIS®) initiativeHealth and Quality of Life Outcomes, 2013
- Patient-reported outcomes in meta-analyses – Part 1: assessing risk of bias and combining outcomesHealth and Quality of Life Outcomes, 2013
- Patient Self-Reports of Symptoms and Clinician Ratings as Predictors of Overall Cancer SurvivalJNCI Journal of the National Cancer Institute, 2011
- Interviewer versus self-administered health-related quality of life questionnaires - Does it matter?Health and Quality of Life Outcomes, 2011
- Relative to the general US population, chronic diseases are associated with poorer health-related quality of life as measured by the Patient-Reported Outcomes Measurement Information System (PROMIS)Journal of Clinical Epidemiology, 2010
- Minimal important differences and response shift in health-related quality of life; a longitudinal study in patients with multiple myelomaHealth and Quality of Life Outcomes, 2010
- Response shift, recall bias and their effect on measuring change in health-related quality of life amongst older hospital patientsHealth and Quality of Life Outcomes, 2010
- Recommendations on Evidence Needed to Support Measurement Equivalence between Electronic and Paper-Based Patient-Reported Outcome (PRO) Measures: ISPOR ePRO Good Research Practices Task Force ReportValue in Health, 2009
- Effects of Survey Mode, Patient Mix, and Nonresponse on CAHPS® Hospital Survey ScoresHealth Services Research, 2009
- Principles of Good Practice for the Translation and Cultural Adaptation Process for Patient-Reported Outcomes (PRO) Measures: Report of the ISPOR Task Force for Translation and Cultural AdaptationValue in Health, 2005