Refining a multimedia patient-reported outcomes measure for patients with low literacy

Abstract Background Patients with low literacy have difficulty completing patient-reported outcomes measures (PROMs). The Multimedia Adaptation Protocol (MAP) guides the process of adapting traditional PROMs to multimedia versions that patients with low literacy can self-administer. We previously executed the first MAP stage, forward adaptation, to adapt the Patient-Reported Outcomes Measurement Information System Upper Extremity (PROMIS-UE) to a multimedia version (multimedia PROMIS-UE). The goal of this study was to refine the multimedia PROMIS-UE via the next MAP stages, back adaptation and qualitative evaluation, to result in a conceptually-equivalent, user-tested multimedia PROMIS-UE ready for psychometric validation. Methodology For back adaptation, mixed-literacy and English-speaking participants masked to the PROMIS-UE “translated” multimedia components back to text. We compared text back-adaptations to the original PROMIS-UE, identified areas of non-equivalence, and updated the multimedia PROMIS-UE accordingly. For qualitative evaluation, we used an iterative design process to conduct cycles of testing to assess usability and face validity. We performed analyses including memo writing and framework-guided thematic analysis. Findings were synthesized into usability, functionality, or content-related themes that guided ideation workshops focused on identifying solutions. Results We recruited 11 participants for back adaptation. We identified areas of non-equivalence between the PROMIS-UE and multimedia PROMIS-UE for 85% of the questions, which were addressed in an updated multimedia PROMIS-UE. We conducted two cycles of qualitative evaluation. We recruited 20 patients and identified 16 themes/challenges: animations unused, audio unused, instructions unclear, instructions unused, difficulty starting questionnaire, response audio button misinterpreted, difficulty with incomplete forms, difficulty submitting answers, purpose of avatars unclear, purpose of smiley scale unclear, difficulty differentiating smileys, inaccurate animation, unclear how to select answer, audio button unused or misinterpreted, confusion with scrolling, and incomplete popup window missed. We updated the multimedia PROMIS-UE after each cycle to address each theme. Conclusions We developed a conceptually-equivalent, user-tested multimedia PROMIS-UE ready to undergo psychometric testing and validation. This work represents an essential intermediary and preparatory phase of PROM development, is analogous to cross-cultural translation phases intentionally positioned prior to psychometric validation, and advances how PROMs can be adapted to a multimedia format. Ultimately, a validated multimedia PROMIS-UE will expand clinicians’ and investigators’ abilities to capture patient-reported outcomes in low literacy populations.