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

Journal of Pediatric Surgery
Sarah B CairoAmerican Academy of Pediatrics Section on Surgery's Delivery of Surgical Care Committee

Abstract

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. 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. A total of 118 surveys were completed (approximately 26.2% response). The average age of patients at time of survey was 12.3years (SD 11.6) with 64.5% less than 15years 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 186.6miles (SD 278.3) with 40.9% of patients traveling ≥30miles; the distance was statistically significantly greater for patients with ARM (p<0.001). With regards to ongoing symptoms, 44.1% experienc...Continue Reading

Citations

May 21, 2019·Journal of Pediatric Gastroenterology and Nutrition·Amanda W HarringtonDoruk E Ozgediz
Dec 16, 2018·Journal of Gastroenterology and Hepatology·Gudrun AspelundUNKNOWN American Academy of Pediatrics Section on Surgery's Delivery of Surgical Care Committee
Jun 27, 2020·Orphanet Journal of Rare Diseases·Kristiina KyrklundMikko P Pakarinen
Nov 11, 2020·The American Surgeon·Asish MisraNisha Narula
Sep 6, 2020·International Journal of Adolescent Medicine and Health·Louise TofftPernilla Stenström
Jun 10, 2021·The American Surgeon·Joseph J LopezUNKNOWN Comprehensive Colorectal Center

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