Transitions in care from pediatric to adult general surgery: Evaluating an unmet need for patients with anorectal malformation and Hirschsprung disease

Background: The provision of timely and comprehensive transition of care from pediatric to adult surgical providers for patients who have undergone childhood operations remains a challenge. Understanding the barriers to transition from a patient and family perspective may improve this process. Methods: A cross-sectional survey was conducted of patients with a history of anorectal malformation (ARM) or Hirschsprung Disease (HD) and their families. The web-based survey was administered through two support groups dedicated to the needs of individuals born with these congenital abnormalities. Categorical variables were compared using Chi-squared and Fisher's exact test with Student's t test and ANOVA for continuous variables. Results: A total of 118 surveys were completed (approximately 26.2% response). The average age of patients at time of survey was 12.3 years (SD 11.6) with 64.5% less than 15 years old. The primary diagnosis was reported for 78.8% patients and included HD (29.0%), ARM (61.3%), and cloaca (9.7%). The average distance traveled for ongoing care was 186.6 miles (SD 278.3) with 40.9% of patients traveling ≥ 30 miles; the distance was statistically significantly greater for patients with ARM (p < 0.001). With regards to ongoing symptoms, 44.1% experience constipation, 40.9% experience diarrhea, and approximately 40.9% require chronic medication for management of bowel symptoms; only 3 respondents (3.2%) reported fecal incontinence. The majority of patients, 52.7% reported being seen by a provider at least twice per year and the majority continued to be followed by a pediatric provider, consistent with the majority of the cohort being less than 18 years of age. Conversations with providers regarding transitioning to an adult physician had occurred in fewer than 13% of patients. The most commonly cited barrier to transition was the perception that adult providers would be ill-equipped to manage the persistent bowel symptoms. Conclusion: Patients undergoing childhood procedures for ARM or HD have a high prevalence of ongoing symptoms related to bowel function but very few have had conversations regarding transitions in care. Early implementation of transitional care plans and engagement of adult providers are imperative to transitions and may confer long-term health benefits in this patient population. Level of evidence: Level IV, case series with no comparison group.