Development of a hidradenitis suppurativa patient decision aid

Dermatol Online J. 2020 Nov 15;26(11):13030/qt18p1n8tt.

Abstract

Background: 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.

Methods: 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.

Results: 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.

Limitations: Small sample sizes may limit generalizability.

Conclusion: 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.

MeSH terms

  • Decision Making
  • Decision Support Techniques*
  • Evidence-Based Medicine
  • Hidradenitis Suppurativa / therapy*
  • Humans
  • Patient Participation*
  • Patient Satisfaction
  • Practice Guidelines as Topic
  • Surveys and Questionnaires