Exploring Values Clarification and Health-Literate Design in Patient Decision Aids: A Qualitative Interview Study

Background This study explores patient and clinician perceptions of a patient decision aid, focusing on 2 features that are often absent: a health-literate approach (e.g., using plain language, encouraging question asking) and a tool that explicitly shows how treatment options align with patient values. The aim was to gather qualitative feedback from patients and clinicians to better understand how such features might be useful in guiding future decision aid development. Methods We present a secondary analysis of data collected during the development of a decision aid for patients considering surgery for sciatica (20 patients with sciatica or low-back pain; 20 clinicians). Patient and clinician feedback on the design was collected via semi-structured interviews with a think-aloud protocol. Transcripts were analyzed using framework analysis. Results Theme 1 explored designs that reinforced key messages about personal autonomy, including an interactive values-clarification tool. Theme 2 explored how participants valued encouragement and scaffolding to ask questions. Theme 3 described how patients preferred information they felt was complete, balanced, and understandable. Limitations Further experimental and observational research is needed to quantitatively evaluate these decision aid features including evaluation among patients with and without low health literacy. Conclusions A health-literate approach to decision aid design and embedding an interactive values-clarification tool may be useful strategies for increasing patient capacity to engage in key aspects of shared decision making. These features may support patients in developing an understanding of personal autonomy in the choice at hand and confidence to ask questions. Implications Findings presented here were specific to the clinical context but provide generalizable practical insights for decision aid developers. This study provides insight into potential future areas of research for decision aid design. Highlights This qualitative study explored clinician and patient perceptions of health literacy features and an interactive values-clarification task within a decision aid for patients considering surgery for sciatica. The first theme described how patients and clinicians appreciated sections of the decision aid that reinforced the importance of personal choice. Patients and clinicians thought the interactive values-clarification task would help patients reflect on their values and support shared decision-making discussions. The second theme described how patients and clinicians appreciated strategies to encourage patients to ask questions of the surgeon. The third theme described patients’ preference for information that they felt was complete, balanced, and understandable.