A Qualitative Study of the Decision-Making and Needs of Adolescents and Young Adults With Acetabular Dysplasia Regarding Periacetabular Osteotomy.

BACKGROUND: Acetabular dysplasia (AD) is a prominent cause of hip pain and dysfunction among adolescents and young adults (AYAs). The gold standard treatment is periacetabular osteotomy (PAO), but there is limited research regarding the perspectives of those considering this procedure. We explored the decision-making and needs of people with AD related to PAO to inform future decision aid development. METHODS: We conducted semi-structured interviews with people with AD age ≥13 years who underwent PAO >6 months ago. Questions explored experiences with AD diagnosis, PAO decision-making, and thoughts and preferences regarding a PAO decision aid. We inductively and deductively coded interviews to identify key themes. RESULTS: 17 participants (12 female, 5 male) completed the interview (age at first PAO = 19.6 ± 5.0 years, range 13-29 years; time from surgery to interview = 934.5 ± 405.7 days; range 312-1510 days). Key themes included: 1) Participants experienced two distinct pathways for AD diagnosis with the majority seeing multiple providers from symptom onset to AD diagnosis while others were diagnosed after imaging due to an acute musculoskeletal injury; 2) Participants overwhelmingly felt relief upon being diagnosed with AD; 3) Female and male participants disclosed PAO concerns that differed by sex; 4) Participants appreciated engaging in shared decision-making around PAO with their surgeon and healthcare team and valued open, transparent conversations about the surgery and recovery; 5) Participants desired tailored peer connections; 6) Participants would value a PAO decision aid that was online, interactive, and comprehensive. CONCLUSIONS: AYAs with AD experience different pathways to diagnosis and the decision to undergo a PAO. They value open, honest communication with their surgical team and peer connections, and favor the development of a comprehensive interactive online decision aid. This work can serve as a model for similar formative research for AYAs considering a variety of elective orthopaedic procedures. KEY CONCEPTS: (1)Most people with acetabular dysplasia (AD) see multiple providers from symptom onset to diagnosis, and experience relief upon being diagnosed.(2)Females and males with AD considering periacetabular osteotomy (PAO) hold concerns that differ by sex.(3)People with AD considering PAO appreciate transparent and open communication with their surgeon and also desire tailored peer connections.(4)People with AD considering PAO would value a comprehensive decision aid that is online and interactive to facilitate the decision-making process. LEVEL OF EVIDENCE: Level V.