An interprofessional clinic for adults with Turner syndrome: the patient perspective

Objectives: This qualitative study assessed the value of a primary care-based interprofessional clinical team for adults with Turner syndrome (TS) utilizing patient perspectives. Methods: Ten patients within one institution’s interprofessional adult TS clinic participated in one of two semi-structured focus groups. Content analysis was used to classify content provided by participants into themes and sub-themes using Dedoose software. Results: Participants found that their quality of care and life were both improved due to the presence of the interprofessional Adults with TS Clinic. Specifically, participants reported that the clinic helped address problems with finding knowledgeable providers and care gaps, made appointments more convenient and improved interprofessional communication. Participants also reported that the clinic helped them find a sense of community and increased personal confidence. Study participants suggested improvements to the clinic by expanding the scope of practice further, simplifying processes to schedule appointments, and potentially creating interprofessional clinics for other rare diseases as well. Conclusion: Pursuing avenues to create interprofessional clinics for adults with rare diseases has value from the patient perspective. This value can translate to improved patient outcomes through improvements in patient knowledge of their diagnosis, adherence to evidence-based care and quality of life.