(4) A Qualitative Needs Assessment for the Research of Reproductive Tract Anomalies

Background: Adolescence is a critical period for the clinical diagnosis, management, treatment, and research of reproductive tract anomalies. There are critical gaps in knowledge regarding best treatment approaches, particularly regarding surgical management and associated long-term outcomes. This qualitative study was conducted to assess the feasibility of a multi-institutional database or registry of children and adolescents with reproductive tract anomalies.

Methods: We purposively recruited geographically diverse focus group participants based on their publication record, clinical experience, and knowledge in reproductive tract anomalies. Two virtual focus groups were conducted in March of 2024. The PI moderated the focus groups and a co-investigator served as the observer/note-taker. The focus groups were one hour in duration and followed a semi-structured format. Focus group participants were compensated for their time. Focus group audio recordings were transcribed by a professional transcription company. After an initial familiarization with the data, the investigators developed a codebook and applied codes line-by-line to transcriptions to allow prominent themes to emerge.

Results: A total of nine participants joined the two focus groups. See table for themes and illustrative quotes. Participants reported there is very limited research and outcome data available to guide counseling of patients with reproductive tract anomalies. Participants identified a myriad of important and unanswered questions regarding the diagnosis and management of reproductive tract anomalies, linked to differences in management across different institutions. They identified several challenges and barriers to research, including the heterogeneity of these conditions and limited clinician time dedicated to complete this research, which make the development of a multi-institutional database or registry difficult. Participants discussed the need for patients to be involved in developing research agendas and identifying important outcomes. See table for themes and illustrative quotes.

Conclusions: There is significant variability in the presentation and management of reproductive tract anomalies with limited outcome data. Surgeons and researchers recognize the need for high-quality data and to develop patient-centered outcomes. A collaborative research database focused on rare and difficult to manage anomalies (i.e. obstructive or vaginal anomalies) is needed but will require overcoming several barriers.