Development of a hidradenitis suppurativa patient decision aid

Abstract

Patient decision aids (PDAs) are tools that facilitate informed shared decision-making between patients and health care providers. To address a previously identified need in treatment decision-making in hidradenitis suppurativa (HS), we developed an HS-PDA. Development of the HS-PDA was based on International Patient Decision Aids Standards. Evidence was derived from the North American Clinical Management Guidelines for HS. Content from guidelines was transformed into patient-friendly language and reviewed by three physicians and two patient representatives. Feedback on HS-PDA content, presentation and practicality was obtained from 7 HS patients and 5 physicians. Revisions were made following thematic analysis. All patients felt the content on treatment options contained the right amount of information and 5 found it helpful to see these options contextualized to their values. Each stated they would use the HS-PDA during treatment decision-making. Three and four physicians respectively indicated the content was accurate and language was patient-friendly. Small sample sizes may limit generalizability. This HS-PDA was developed in accordance with international standards based on current HS guidelines with input from patients and physicians. It is available online without cost.