Can We Enhance Shared Decision-making for Periacetabular Osteotomy Surgery? A Qualitative Study of Patient Experiences.

Background: Periacetabular osteotomy (PAO) surgery presents an opportunity for shared decision-making (SDM) and may be facilitated by decision-making tools. Currently, no diagnosis or treatment-specific decision-making tools exist for this patient population. Understanding patient PAO surgery decision-making experiences and processes would enable development of a treatment-specific decision-making tool and would help hip preservation surgeons with SDM practices.

Questions/purposes: Qualitative methodology was used to address the following questions: (1) What were the information support needs of adult patients with hip dysplasia who decided to have PAO? (2) What was important to adult patients with hip dysplasia who decided to have PAO? (3) How did adult patients with hip dysplasia who have undergone PAO experience the surgical decision-making process? (4) What elements of SDM did adult patients with hip dysplasia experience with their surgeons when deciding to have PAO?

Methods: Fifteen volunteer, English-speaking patients in the United States who had been diagnosed with hip dysplasia and who had undergone PAO surgery 6 to 12 months prior to the study were recruited through five PAO surgery Facebook support groups. Individuals were excluded if they had an underlying neuromuscular condition or other diagnosis related to nondevelopmental dysplasia of the hip or if they had a previous PAO surgery > 12 months before data collection. We used purposive sampling strategies to promote sample heterogeneity based on age and preoperative activity level, as these are characteristics that may impact decision-making. Participants were categorized into three age groups: 20 to 29 years, 30 to 39 years, and ≥ 40 years. Participants were also categorized as having "low activity," "moderate activity," or "high activity" preoperatively based on self-reported University of California Los Angeles (UCLA) Activity Scale scores. Participants were enrolled consecutively if they met the inclusion criteria and fulfilled one of our sampling categories; we had plans to enroll more participants if thematic saturation was not achieved through the first 15 interviews. Participants included 14 women and one man ranging in age from 23 to 48 years, and all had undergone PAO surgery for hip dysplasia 6 to 12 months prior to the interview. One-on-one semistructured interviews were conducted with each participant by a single interviewer through Zoom video conferencing using video and audio recording. Participants answered semistructured interview questions and provided verbal responses to survey questions so researchers could gain demographic information and details about their symptoms, diagnosis, and PAO surgery between June 2021 and August 2021. Quantitative survey data were analyzed using descriptive statistics. Qualitative data were analyzed by three researchers using principles of reflexive thematic analysis. Candidate themes were iteratively defined and redefined until central themes were developed that were distinctly different, yet centrally relevant, and answered the research questions. All codes that informed category and theme development were generated within the first six transcripts that were analyzed. The team felt that thematic saturation was established with the 15 interviews.

Results: The main information needs for adult patients with hip dysplasia included diagnosis and treatment-related information, as well as logistics related to surgery and recovery. Many patients described that their information needs were only partially met by their surgeon; most engaged in additional information-seeking from scientific research and online resources and relied on patient peers to meet information needs about the lived experience and logistics related to surgery and recovery. It was important to patients that PAO surgery could preserve their native hip or delay THA and that PAO surgery was likely to reduce their pain and improve function; decision-making was facilitated when patients were able to identify how the indications and goals of PAO surgery aligned with their own situation and goals for surgery. Patients' experiences with decision-making were more positive when information needs were met, when indications and goals for PAO surgery aligned with their personal values and goals, and when their preferred and actual decision-making roles aligned. Adult patients with hip dysplasia described high variability in the extent to which patients were invited to share personal preferences, values, and goals around PAO surgery and the extent to which preferred patient decision-making roles were assessed.

Conclusion: We found that elements of SDM are not consistently integrated into hip preservation practice. The knowledge gained through this work about patient PAO surgery information needs, what matters to patients when deciding to have surgery, and their experiences with PAO surgery decision-making can inform future PAO surgery decision-making tool development. Future studies are needed to validate the findings of this study and to determine whether they are generalizable to adult patients with hip dysplasia with different demographic characteristics or to patients who do not participate in social media support groups.

Clinical relevance: Surgeons should recognize that patients are likely to leave their office without their information needs being met. SDM strategies can promote more effective information exchanges in the clinic so surgeons can help patients identify their information needs, provide education and direction to accurate and reputable resources to meet those needs, and help patients appraise information they gather and apply it to their personal situation. Hip preservation surgeons can use the sample SDM script and checklist offered here to support adult patients with hip dysplasia who are making PAO surgery decisions until a future diagnosis and treatment-specific decision-making tool is available.