P2.P310: Transition of Care for Anorectal Malformations: A Qualitative Assessment of the Patient Perspective

Background: Given the long-term health complications for patients with anorectal malformations (ARM), the need for comprehensive transitional services is an established priority. We aim to identify the challenges faced by patients with ARM during the transition of care in order to develop a program to improve their quality of care and decrease long-term health complications.

Methods: A qualitative study was conducted between June 2023 and April 2024 with ARM patients (≥ 18 years), who have already transitioned or are actively transitioning to adult providers. Participants were recruited through the Comprehensive Congenital Colorectal Program and social media. Semi-structured interviews were conducted by a pediatric surgeon using an online platform (WebEx). Interviews were recorded and transcribed, then coded by a 4-member team. Thematic analysis was performed to identify themes across patient experiences.

Results: Of the fourteen participants included, the median age was 48 years (range: 18 – 70) with twelve female and two male patients. Nine patients had imperforate anus and five patients had cloaca. Patient experiences were centered around six themes: gaps in health care (difficulty finding adult providers, lack of continuity of care), gaps in knowledge (patient, parent, provider), medical trauma (physical, emotional), mental health (anxiety, depression, therapy/counseling/support), social maltreatment (peer, parental, spouse/partner), and quality of life (health-related, psychosocial) (Table 1).

Conclusion: Patients with ARM face emotional, social, and practical challenges that impact their lives into adulthood. Educating patients, parents, and adult providers about the complexities of these conditions; identifying qualified adult providers; and extending psychosocial support to patients and their families should be prioritized during the transition of care.