Developing a patient decision aid for patients with autosomal dominant polycystic kidney disease
Background People with autosomal dominant polycystic kidney disease (ADPKD) often feel overwhelmed when deciding whether to take medicine due to insufficient information and concerns about adverse events. Patient decision aids (PDAs), which provide relevant information and considerations, can be helpful. Methods We identified unmet needs in ADPKD management and decision-making through in-depth interviews with patients and clinicians, along with a literature review. We revised a draft PDA by getting feedback from a pilot test with five patients with ADPKD and evaluated the final version with validated assessment tools. Results Unmet needs were identified for ‘detailed information’ and ‘personalized prediction of treatment outcomes’. We aimed to empower patients to take active roles in their treatment decisions with the PDA. The final PDA contains educational materials, a decision aid featuring six values-and-preferences questions, and health monitoring tools. Five pilot participants reported satisfaction with it, stating that it increased their confidence in making decisions. The final version met all applicable International Patient Decision Aid Standards (IPDASi v4.0) criteria and 34 out of 35 items on the health literacy checklist. Conclusion We created a practical PDA for patients with ADPKD considering tolvaptan, supporting informed decision-making aligned with values and preferences. We plan to evaluate its impact on treatment outcomes in a larger patient population.
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