Patient-reported outcomes (PROs) are crucial in healthcare research, offering insights into interventions from the patient’s perspective. This study focuses on mitigating respondent burden in #PROs to enhance data quality and decision-making.
After a thorough literature review and a Delphi survey involving multi-stakeholders, the authors compiled 19 recommendations to address this issue including “where possible, consider the use of ePROs, which may help reduce respondent burden, but must be balanced with the needs and preferences of the target population” and “explore the functionality of ePROs with diverse representatives from the target population where possible”.
Abstract
Patient-reported outcomes (PROs) are increasingly used in healthcare research to provide evidence of the benefits and risks of interventions from the patient’s perspective and to inform regulatory decisions and health policy. PROs in clinical practice can facilitate symptom monitoring, tailor care to individual needs, aid clinical decision-making, and inform value-based healthcare initiatives. Despite their benefits, there are concerns that the potential burden on respondents may reduce their willingness to complete PROs, with a potential impact on the completeness and quality of the data for decision-making. We therefore conducted an initial literature review to generate a list of candidate recommendations aimed at reducing respondent burden.
A two-stage Delphi survey by an international multi-stakeholder group followed this. A consensus meeting was held to finalize the recommendations. The final consensus statement includes 19 recommendations to address PRO respondent burden in healthcare research and clinical practice. If implemented, these recommendations may reduce PRO respondent burden.