Making Patient-reported Outcome Measures Patient-friendly: Applying “Patient-reported Outcomes Tools: Engaging Users and Stakeholders” Guidelines to a Graphical “Report Card” for Cleft Outcomes

Abstract

Background: Patient-reported outcome measures (PROMs), such as the CLEFT-Q, provide valuable insights into the psychosocial and functional well-being of patients with cleft lip and/or palate. Ideally, PROM data should not only inform clinicians and researchers but should also be shared back with patients and families; however, no guidelines exist for formatting CLEFT-Q data for patient review. This study evaluated different methods of displaying CLEFT-Q data to identify visual formats best suited for patient and clinician use. Methods: Patients and families participated in a modified Delphi process to assess data presentation formats developed according to the Patient-reported Outcomes Tools: Engaging Users and Stakeholders (PROTEUS) Consortium guidelines. Participants completed interpretation tasks, rated clarity and usefulness, and provided qualitative feedback. Using iterative Delphi rounds, the visualization style, color use, and semantic markups were refined. Results: Tables and complex graphics (eg, polar charts, histograms, ridgeplots) were considered overly complex. Bar charts were well-understood, but participants preferred a simplified “horizontal number line” showing score ranges, individual scores, and comparators (eg, average scores of similar patients). “Traffic light” color motifs were rejected because they connoted “good” versus “bad,” whereas gray backgrounds were preferred for maintaining objectivity and clarity. Conclusions: Data visualization must balance information density with clarity and understandability. Statistical graphics that are preferred by clinicians and researchers were shown to be too confusing, whereas an infographic “number line” was preferred by patients and families. Our findings for CLEFT-Q and FACE-Q may be applicable to other PROMs.