Adapting patient-reported outcome measures (PROMs) to ensure they are accessible to individuals across all literacy levels is crucial in both clinical and research settings. The traditional text-based nature of these tools presents challenges for patients with low or limited literacy, potentially leading to inaccuracies in data collection. This study aimed to develop a multimedia version of the Patient Reported Outcomes Measurement Information System Upper Extremity Short Form (PROMIS-UE), termed mPROMIS-UE, to be more inclusive.
The development process incorporated a comprehensive Multimedia Adaptation Protocol, executed in seven iterative phases. These phases included extensive planning with a community advisory board, direct observations, and a series of discovery interviews with patients, caregivers, and clinic staff. The research team then engaged in ideation and prototyping, followed by member-checking interviews and feedback collection to refine the adaptation.
Methodological Approach
Direct observations were meticulously documented and analyzed thematically. Interviews, recorded and analyzed using a rapid thematic approach, yielded key themes that informed the design challenges. These challenges were centered on literacy, customizability, convenience, and the potential for shame. The multidisciplinary research team distilled these themes into actionable design improvements.
The research identified critical features to address these challenges, such as incorporating audio, animations, icons, avatars, progress indicators, and illustrated response scales. These features were integrated into the mPROMIS-UE prototype, which underwent iterative refinement based on user feedback and community advisory board recommendations.
Key Findings and User Personas
The study involved 12 hours of observations and interviews with 17 participants of varying literacy levels. The interviews revealed two distinct user personas and three literacy personas, which were pivotal in shaping the mPROMIS-UE design. The final prototype resonated well with participants, demonstrating the feasibility of adapting PROMs to multimedia formats.
The iterative feedback process ensured that the mPROMIS-UE addressed the identified challenges effectively, making it a credible and acceptable tool for diverse literacy populations. The study’s success underscores the potential for multimedia adaptations to enhance the accessibility of patient-reported outcomes.
Practical Implications
– Multimedia features like audio and animations can significantly enhance the usability of PROMs for low-literacy patients.
– Customizability and convenience are critical to ensuring that PROMs are user-friendly and accessible.
– Addressing potential feelings of shame through thoughtful design can improve patient engagement and data accuracy.
– Iterative feedback from diverse user groups is essential in developing effective health tools.
The successful adaptation of PROMIS-UE to mPROMIS-UE highlights the importance of inclusive design in healthcare tools. Future research will focus on back adaptation, usability testing through qualitative evaluation, and psychometric validation of mPROMIS-UE. A validated multimedia PROM could significantly improve clinicians’ and researchers’ ability to capture accurate patient-reported outcomes from mixed literacy populations.
Original Article: PLoS One. 2024 Jun 5;19(6):e0304351. doi: 10.1371/journal.pone.0304351. eCollection 2024.
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