Patient-Centered Instrument Design: Problems and solutions based on patient feedback

This work is a synthesis of four smaller studies on problems that patients often have when completing PGIs, focused on various parts of the instrument, such as the title, the concept of interest / item wording, and the response option set. We show that even in the context of what seems to be a brief, simple instrument such as a PGI, there are many places where design choices or differences between the perspective of instrument creators and patients can impact the experience of completing an instrument, and consequently the quality of the data it collects. We also note that any such issues in the source version of an instrument tend to be maintained or exacerbated (in the case of extreme linguistic or cultural differences between the source and target language) in translations of that instrument, which is an important consideration for global clinical trials. We recommend a few approaches for improving the design, comprehensibility, and translatability of PGIs, and be extension any PRO, based on qualitative feedback and experimental results from patients.

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