Reality check: What happens when patients with anorectal malformations grow up? A pilot study of medical care transition from the adult patient perspective

Background: There has been an increased focus on transition of pediatric and adolescent patients to adult centered care. For patients with rare and complex conditions, such as anorectal malformations (ARM), difficulties are compounded by the absence of structured transition protocols and lack of adult provider expertise. We sought to explore the actual experiences of adult patients with ARM and distinguish if there are factors that influence the ability to achieve satisfactory transition to adult centered medical care. Methods: Patients older than 18 years with ARM were identified through a hospital database and social support networks, and invited to participate in an anonymous questionnaire. Patients were asked to describe their transition experience as well as report their demographics, and functional outcomes (bowel and bladder function). Results: Twenty-six surveys were completed. Comparison of those respondents (53%) who had transitioned to adult providers to those that had not yet transferred care demonstrated no difference in satisfaction with bowel and bladder function, presence of ostomy, and education level. There was a slight trend for patients with more complex malformations to seek further medical care with adult providers. Of those who transitioned, 67% reported no discussion prior to their transition and 71% received no recommendations for follow-up providers. Conclusions: This pilot project suggests that a significant number of adult patients with ARM lack transition preparation and fail to find adult providers with expertise. Future studies will need to find optimal ways to address these issues. Type of Study: Survey. Retrospective Study Levels of Evidence: Level II.