28th Annual Conference of the International Society for Quality of Life Research
Quality of Life Research
Aims: Almost all patient-reported outcomes measures (PROMs) are text based. This poses a barrier to accurate completion in low literacy populations. We developed the Multimedia Adaptation Protocol (MAP) for adapting validated, text-based PROMs to multimedia versions that can be self-administered in mixed literacy populations. We aimed to execute the first stage of the MAP, forward adaptation, to adapt the Patient-Reported Outcomes Measurement Information System Upper Extremity Short Form
... -UE) to a multimedia version (mPROMIS-UE) for a mixed literacy hand surgery patient population in Baltimore, Maryland (USA). Methods: Taking a community-engaged and human-centered design approach, forward adaptation included six phases undertaken in a serial, iterative fashion (Table 1 ). Direct observations were documented in memos which underwent rapid thematic analysis. Interviews were audio recorded and documented using analytic memos; framework analysis was used to identify inductive and deductive themes. Themes were further analyzed to identify personas and distilled into design challenges to guide ideation and prototyping that involved multidisciplinary research team members. To ensure the credibility of our findings, we consulted our community advisory board (CAB) and collected additional interviews including member checking of initial findings. Results: We conducted 12 h of observations. We interviewed 17 adult English-speaking participants (12 patients, 3 caregivers, 2 staff) of mixed literacy (age 20-81 years). We identified two distinct user personas and three distinct literacy personas; we developed the mPROMIS-UE with these personas in mind. Themes from interviews were distilled into four broad design challenges: surrounding literacy, customizability, convenience, and shame. We identified features (audio, animations, icons, avatars, progress indicator) that addressed the design challenges. These features were synthesized into a prototype that underwent four iterations of refinement. Conclusion: We successfully adapted the PROMIS-UE to an mPROMIS-UE that addresses the challenges identified in a mixed literacy hand surgery population. We demonstrated the feasibility of adapting PROMs to multimedia versions. The mPROMIS-UE is ready to undergo the remaining stages of the MAP (back adaptation, qualitative evaluation, validation). A validated mPROMIS-UE will expand clinicians' and investigators' ability to capture PROs in mixed literacy populations.