Transition of care: a growing concern in adult patients born with colorectal anomalies

Traditionally, the care of children and adults has been arbitrarily separated into pediatric and adult medicine and surgery. Despite progress in pediatric surgical techniques, patients born with congenital anomalies still suffer from significant functional sequelae, which persist into adulthood. We aim to describe some of the most common problems experienced by adult patients with congenital colorectal malformations.

Following IRB approval, we performed a retrospective database review of all adult patients who were treated by our group from 1983 until 2017.

We identified 88 cases. 51 patients had ARM, 18 cloacas, 9 presacral masses, 3 HD, 2 spina bifida and 5 with other diagnoses (3 vaginal anomalies, 1 cloacal exstrophy, 1 obstructed seminal vesical). The specific problems addressed were: complications from previous operations (41), rectal prolapse (25), fecal incontinence (11), gynecologic concerns (12), urologic concerns (6), and recurrent recto urogenital fistula (3). We performed 83 surgical interventions, including 13 rectal prolapse repair, 13 continent appendicostomies, 44 PSARP or redo PSARP, 11 resections of presacral masses, 11 vaginoplasties, 2 examinations under anesthesia, and 2 Mitrofanoff procedures. Five patients were treated medically (bowel management program, obstetric, urologic evaluation).

There is a growing need to better prepare adult providers to assume the care of patients born with congenital colorectal disease as these patients transition to adulthood. A collaboration between specialized pediatric referral centers with adult colorectal surgeons, urologists and gynecologists is a potential pathway for the adequate transition of care.