Med Care 2019 May;57 Suppl 5 Suppl 1:S46-S51
Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins.
Introduction: We have used several methods to aid in the interpretation of patient-reported outcome (PRO) scores, and to suggest recommendations for acting on them, both within the PatientViewpoint system and in work done since.
Methods For Interpreting Pro Scores: For identifying possibly concerning change scores, PatientViewpoint uses questionnaires' minimally important differences or score worsening >½ SD. For poor scores in absolute terms, PatientViewpoint primarily uses distributions based on normative data (eg, worst quartile, >2 SD from the mean). To advance methods for score interpretation, we explored using needs assessments to identify health-related quality-of-life scores associated with unmet needs and requiring follow-up. We also investigated the ability of PRO scores to predict patients' most bothersome issues.
Methods For Addressing Pro Results: To develop suggestions for addressing issues identified by PRO questionnaires, we conducted a targeted literature review, interviewed experts from different disciplines, developed draft recommendations based on the literature and interviews, and finalized the recommendations in a consensus meeting with all experts.
Discussion: The needs assessment method requires strongly correlated content in the needs assessment and health-related quality-of-life questionnaire. Additional research is needed to explore using the worst scores in absolute terms to identify patients' most bothersome issues. The approach described for developing suggestions for addressing PRO results focuses on local resources and is best-suited for a local context.
Key Points: A combination of pragmatic solutions and exploratory research can inform interpreting and acting on PRO scores.