Importance: Patient decision aids (PDAs) are tools that facilitate medical discourse between patients and clinicians, enabling patients to make informed choices among treatment options. While PDAs have been developed for other dermatologic conditions, to our knowledge, none exist for adults with atopic dermatitis (AD).
Objective: To develop a PDA that assists adult patients with moderate to severe AD in selecting systemic treatment options.
Design, setting, and participants: For this qualitative study, the PDA was developed per International Patient Decision Aid Standards Collaboration guidelines. The development process used a systematic approach following designated phases: scoping and design, prototype development, alpha testing, beta testing, and finalization. A steering group was used for all stages of development except for beta testing, which used participants outside of the steering group. The study was conducted from 2020 to 2025 at Oregon Health & Science University's Department of Dermatology in both in-person and virtual environments. The steering groups consisted of 10 adult patients with moderate to severe AD and 6 dermatology clinicians for prototype development, 8 patients and 5 clinicians for alpha testing, and 5 patients and 2 clinicians for finalization of the PDA (performed after beta testing, which included 8 new patients and 6 clinicians).
Main outcomes and measures: PDA content and quality assessments occurred through qualitative thematic analysis performed on open-ended feedback question responses from patients and clinicians.
Results: Among the 10 patients in the initial steering group, the mean (range) age was 38.7 (20-74) years, and 8 were female. Patients valued transparent and organized visual formatting, simplified language, and focused content themes, such as efficacy, dosing frequency, route of administration, relevant adverse effects, and relative costs. Dermatology clinicians prioritized laboratory monitoring, efficacy, and adverse effect data. Patients preferred simplicity, whereas clinicians preferred an emphasis on detail. The finalized International Patient Decision Aid Standards Collaboration-adherent PDA used a staged approach to balance these preferences.
Conclusions and relevance: This qualitative study supports prior findings that when formulating PDAs, authors should prioritize simplicity to enable patient comprehension in clinician-led discussions. This study found that a staged approach may help to deliver complex treatment information in a patient-centered manner, enhancing patient-clinician discussions, and facilitating shared decision-making in adults with AD.