The Curtis National Hand Center, MedStar Union Memorial Hospital, Baltimore, Maryland, United States of America.
Department of Plastic and Reconstructive Surgery, Johns Hopkins Medicine, Baltimore, Maryland, United States of America.
PLoS One. 2024 Jun 5;19(6):e0304351. doi: 10.1371/journal.pone.0304351. eCollection 2024.
Almost all patient-reported outcomes measures (PROMs) are text-based, which impedes accurate completion by low and limited literacy patients. Few PROMs are designed or validated to be self-administered, either in clinical or research settings, by patients of all literacy levels. We aimed to adapt the Patient Reported Outcomes Measurement Information System Upper Extremity Short Form (PROMIS-UE) to a multimedia version (mPROMIS-UE) that can be self-administered by hand and upper extremity patients of all literacy levels.
Our study in which we applied the Multimedia Adaptation Protocol included seven phases completed in a serial, iterative fashion: planning with our community advisory board; direct observation; discovery interviews with patients, caregivers, and clinic staff; ideation; prototyping; member-checking interviews; and feedback. Direct observations were documented in memos that underwent rapid thematic analysis. Interviews were audio-recorded and documented using analytic memos; a rapid, framework-guided thematic analysis with both inductive and deductive themes was performed. Themes were distilled into design challenges to guide ideation and prototyping that involved our multidisciplinary research team. To assess completeness, credibility, and acceptability we completed additional interviews with member-checking of initial findings and consulted our community advisory board.
We conducted 12 hours of observations. We interviewed 17 adult English-speaking participants (12 patients, 3 caregivers, 2 staff) of mixed literacy. Our interviews revealed 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, illustrated response scale) that addressed the design challenges. The last 6 interviews included member-checking; participants felt that the themes, design challenges, and corresponding features resonated with them. These features were synthesized into an mPROMIS-UE prototype that underwent rounds of iterative refinement, the last of which was guided by recommendations from our community advisory board.
We successfully adapted the PROMIS-UE to an mPROMIS-UE that addresses the challenges identified by a mixed literacy hand and upper extremity patient cohort. This demonstrates the feasibility of adapting PROMs to multimedia versions. Future research will include back adaptation, usability testing via qualitative evaluation, and psychometric validation of the mPROMIS-UE. A validated mPROMIS-UE will expand clinicians' and investigators' ability to capture patient-reported outcomes in mixed literacy populations.
几乎所有的患者报告结局测量（PROM）都是基于文本的，这使得低识字和有限识字的患者难以准确完成。很少有 PROM 被设计或验证为在临床或研究环境中，由所有识字水平的患者自我管理。我们的目的是将患者报告结局测量信息系统上肢简短版（PROMIS-UE）改编为多媒体版本（mPROMIS-UE），使所有识字水平的上肢患者都可以通过手和上肢进行自我管理。
我们的研究应用多媒体改编协议，包括七个连续迭代的阶段：与我们的社区咨询委员会进行规划；直接观察；对患者、护理人员和诊所工作人员进行发现访谈；创意产生；原型制作；成员核对访谈；以及反馈。直接观察记录在备忘录中，这些备忘录经过了快速主题分析。访谈以音频记录，并使用分析备忘录记录；采用快速、框架引导的主题分析，包括归纳和演绎主题。将主题提炼为设计挑战，以指导涉及我们多学科研究团队的创意产生和原型制作。为了评估完整性、可信度和可接受性，我们完成了成员核对的补充访谈，并咨询了我们的社区咨询委员会。
我们进行了 12 小时的观察。我们采访了 17 名成年英语患者（12 名患者、3 名护理人员、2 名工作人员），他们的识字水平参差不齐。我们的访谈揭示了两个不同的用户角色和三个不同的识字角色；我们根据这些角色制作了 mPROMIS-UE。访谈主题被提炼为围绕识字、可定制性、便利性和羞耻感的四个广泛的设计挑战。我们确定了一些功能（音频、动画、图标、头像、进度指示器、插图反应量表）来解决设计挑战。最后 6 次访谈包括成员核对；参与者认为主题、设计挑战和相应的功能与他们产生了共鸣。这些功能被综合到一个 mPROMIS-UE 原型中，经过了几轮迭代改进，最后一轮是根据我们的社区咨询委员会的建议进行的。
我们成功地将 PROMIS-UE 改编为 mPROMIS-UE，解决了混合识字上肢患者群体提出的挑战。这证明了将 PROM 改编为多媒体版本的可行性。未来的研究将包括反向改编、通过定性评估进行可用性测试以及对 mPROMIS-UE 的心理测量验证。一个经过验证的 mPROMIS-UE 将扩大临床医生和研究人员在混合识字人群中捕捉患者报告结局的能力。
