Evaluating an unmet need for patients with anorectal malformation and Hirschsprungs disease.


eMediNexus    31 May 2018

The goal of a study published in the Journal of Pediatric Surgery was based on a cross-sectional survey conducted on patients with a history of anorectal malformation (ARM) or Hirschsprung’s Disease (HD), and their families. Overall, 118 surveys were completed rendering a 26.2% response. The average age of patients at time of survey was 12.3 years, 64.5% being less than 15 years old. The primary diagnosis was reported for 78.8% patients, which included HD (29.0%), ARM (61.3%), and cloaca (9.7%). Among the patients, 44.1% reported to experience constipation, 40.9% diarrhea, and approximately 40.9% required chronic medication for management of bowel symptoms. Meanwhile, only 3.2% respondents reported fecal incontinence. In addition, 52.7% of the patients reported being assessed by a provider, at least twice a year and the majority continued to be followed by a pediatric provider. 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. From the results, it was stated that 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. It was proposed that early engagement of adult providers may confer long-term health benefits in this patient population.

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