Understanding the Long-term Psychosocial and Healthcare Needs of Adults with Congenital Colorectal and Pelvic Malformations.

Abstract

Background: Individuals born with anorectal and pelvic malformations require lifelong management. Although initially cared for by pediatric providers, these conditions continue to impact patients' health and quality of life into adulthood.

Objective: To assess the prevalence of psychiatric disorders and substance use among adults with congenital colorectal and pelvic malformations, and to explore their distribution across demographic and clinical variables.

Design: Single-center retrospective cohort study.

Settings: Academic tertiary-care hospital in the United States.

Patients: Adults aged 18 years and older with a diagnosis of Hirschsprung disease, anorectal malformations, cloacal deformities, or VACTERL association, identified through International Classification of Diseases, Ninth and Tenth Revision (ICD-9 and ICD-10) codes.

Main outcome measures: Prevalence of psychiatric diagnoses (depression and/or anxiety) and substance use disorders, and their associations with demographic and clinical characteristics.

Results: A total of 81 patients were included. The median age was 47.0 years (interquartile range, 38.0-64.0), and 44.4% were male. A psychiatric diagnosis was documented in 51.9% of patients, and 30.9% had a history of substance use disorder. Among those with a psychiatric diagnosis, 28.6% also had documented substance use. Substance use was significantly more prevalent among patients with psychiatric conditions compared to those without (40.5% vs. 20.5%, p = 0.002).

Limitations: Retrospective design, small sample size, and reliance on provider-documented diagnoses, which may underestimate the true prevalence.

Conclusions: Adults with congenital colorectal and pelvic malformations demonstrate a high burden of psychiatric disorders and substance use. These findings highlight the need for multidisciplinary care models that incorporate mental health services into the long-term management of this growing patient population, starting from pediatric care and continuing through adult transitions. See Video Abstract.