Developing a protocol for adapting multimedia patient-reported outcomes measures for low literacy patients

Abstract

Background Self-administration of patient-reported outcomes measures (PROMs) by patients with low literacy is a methodologic and implementation challenge. There is an increasing emphasis on patient-centered care and wider adoption of PROMs to understand outcomes and measure healthcare quality. However, there is a risk that the use of PROMs could perpetuate health disparities unless they are implemented in an inclusive fashion. We present a protocol to adapt validated, text-based PROMs to a multimedia format (mPROMs) to optimize self-administration in populations with limited literacy. We describe the processes used to develop the protocol and the planned protocol implementation. Methods/Design Our study protocol development was guided by the International Quality of Life Assessment (IQOLA) protocol for translating and culturally adapting PROMs to different languages. We used the main components of IQOLA’s protocol to generate a conceptual framework to guide development of a Multimedia Adaptation Protocol (MAP). The MAP, which incorporates human-centered design (HCD) and takes a community-engaged research approach, includes four stages: forward adaptation, backward adaptation, qualitative evaluation, and validation. The MAP employs qualitative and quantitative methods including observation, cognitive and discovery interviews, ideation workshops, prototyping, user testing, co-creation interviews, and psychometric testing. An iterative design is central to the MAP and consistent with both the IQOLA protocol and HCD processes. We will pilot test and execute the MAP to adapt the Patient Reported Outcomes Measurement Information System (PROMIS) Upper Extremity Short Form for use in a mixed literacy hand and upper extremity patient population in Baltimore, Maryland. Discussion The MAP provides an approach for adapting PROMs to a multimedia format. We encourage others to evaluate and test this approach with other questionnaires and patient populations. The development and use of mPROMs has the potential to expand our ability to accurately capture PROs in limited literacy populations and promote equity in PRO measurement.