Healthcare Burden and Cost in Children with Anorectal Malformation During the First 5 Years of Life.

OBJECTIVE: To identify cumulative 5-year healthcare costs and healthcare days in children with anorectal malformation (ARM) and to compare the cumulative 5-year healthcare costs and healthcare days in children with ARM with 3 control cohorts: healthy, premature, and congenital heart disease (CHD). STUDY DESIGN: We performed a retrospective case-control study using the Truven MarketScan database of commercial claims encounters between 2008 and 2017. The ARM, CHD, and premature cohorts were identified using a targeted list of International Classification of Diseases 9th or 10th Revision diagnosis and Current Procedural Terminology codes. The healthy cohort included patients without ARM, preterm birth, or CHD. RESULTS: We identified 664 children with ARM, 3356 children with heart disease, 63 190 children who were born preterm, and 2947 healthy patients. At 5 years, the total healthcare costs of children with ARM ($273K, 95% CI $168K-$378K) were similar to the premature cohort ($246K, 95% CI $237K-$255K) and lower than the CHD cohort ($466K, 95% CI $401K-$530K, P < .001). Total healthcare days were similar in children with ARM (158 days, 95% CI 117-198) and prematurity (141 days, 95% CI 137-144) but lower than CHD (223 days, 95% CI 197-250, P = .02). In ARM, outpatient care (126 days, 95% CI 93-159) represented the largest contribution to total healthcare days. CONCLUSIONS: Children with ARM accumulate similar healthcare costs to children with prematurity and comparable healthcare days to children with CHD and prematurity in the first 5 years of life. Outpatient care represents the majority of healthcare days in children with ARM, identifying this as a target for quality improvement and demonstrating the long-term impact of this condition.

The socioeconomic impact of a pediatric ostomy in Uganda: a pilot study.

INTRODUCTION: Multiple pediatric surgical conditions require ostomies in low-middle-income countries. Delayed presentations increase the numbers of ostomies. Patients may live with an ostomy for a prolonged time due to the high backlog of cases with insufficient surgical capacity. In caring for these patients in Uganda, we frequently witnessed substantial socioeconomic impact of their surgical conditions. METHODS: The operative log at the only pediatric surgery referral center in Uganda was reviewed to assess the numbers of children receiving ostomies over a 3-year period. Charts for patients with anorectal malformations (ARM) and Hirschsprung's disease (HD) were reviewed to assess delays in accessing care. Focus group discussions (FGD) were held with family members of children with ostomies based on themes from discussions with the surgical and nursing teams. A pilot survey was developed based on these themes and administered to a sample of patients in the outpatient clinic. RESULTS: During the period of January 2012-December 2014, there was one specialty-certified pediatric surgeon in the country. There were 493 ostomies placed for ARM (n = 234), HD (N = 114), gangrenous ileocolic intussusception (n = 95) and typhoid-induced intestinal perforation (n = 50). Primary themes covered in the FGD were: stoma care, impact on caregiver income, community integration of the child, impact on family unit, and resources to assist families. Many patients with HD and ARM did not present for colostomy until after 1 year of life. None had access to formal ostomy bags. 15 caregivers completed the survey. 13 (86%) were mothers and 2 (13%) were fathers. Almost half of the caregivers (n = 7, 47%) stated that their spouse had left the family. 14 (93%) caregivers had to leave jobs to care for the stoma. 14 respondents (93%) reported that receiving advice from other caregivers was beneficial. CONCLUSION: The burden of pediatric surgical disease in sub-Saharan Africa is substantial with significant disparities compared to high-income countries. Significant socioeconomic complexity surrounds these conditions. While some solutions are being implemented, we are seeking resources to implement others. This data will inform the design of a more expansive survey of this patient population to better measure the socioeconomic impact of pediatric ostomies and guide more comprehensive advocacy and program development.

Healthcare Utilization and Comorbidities Associated with Anorectal Malformations in the United States.

OBJECTIVE: To determine nationwide prevalence and healthcare utilization in children with anorectal malformations and associated anomalies over a 6-year period. STUDY DESIGN: We used the Kids' Inpatient Database for the years 2006, 2009, and 2012 for data collection. International Classification of Diseases, Ninth Revision codes were used to identify patients with anorectal malformations and associated anomalies. RESULTS: A total of 2396 children <2 years of age with anorectal malformations were identified using weighted analysis; 54.3% of subjects were male. The ethnic subgroups were 40.1% white, 23.6% Hispanic, 9.3% African American, and 27% other ethnicity. Other congenital anomalies were reported in 80% of anorectal malformations and were closely associated with increased length of stay and costs. A genetic disorder was identified in 14.1% of the sample. Urogenital anomalies were present in 38.5%, heart anomalies in 21.2%, and 8.6% had vertebral anomalies, anal atresia, cardiac defects, tracheoesophageal fistula and/or esophageal atresia, renal anomalies, and limb defects association. Anorectal malformations with other anomalies including vertebral anomalies, anal atresia, cardiac defects, tracheoesophageal fistula and/or esophageal atresia, renal anomalies, and limb defects association incurred significant hospital charges when compared with anorectal malformations alone. The average annual healthcare expenditure for surgical correction of anorectal malformations and associated anomalies for the 3 years was US $45.5 million. CONCLUSIONS: This large, major nationally representative study shows that majority of children with anorectal malformations have additional congenital anomalies that deserve prompt recognition. The high complexity and need for lifelong multidisciplinary management is associated with substantial healthcare expenditure. This information complements future healthcare resource allocation and planning for management of children with anorectal malformations.

Sociodemographics and the impact of a colostomy to indigent families and children with colorectal disorders in Honduras.

INTRODUCTION: To describe the social impact of a colostomy on indigent families and affected children with anorectal malformations (ARM) or Hirschsprung's disease (HD) in San Pedro Sula, Honduras, we specifically targeted very low-income households that attended an international medical brigade for ARM and HD in 2016. METHODS: The impact of a colostomy on the families and children's daily life was analyzed by personal interviews with a questionnaire. RESULTS: Twenty families with children were included in the study. Children's age ranged from 5 months to 27years (median 2.31). Annual income was reported to be less than $500 USD in 42.8%. Impairment of daily family life by the colostomy was reported in 85%. Parents of preschool children younger than 7 years are more affected than parents of older children, whereas children older than 7 years reported on more social problems. Moreover, 50% of the school-aged children did not attend school owing to issues directly related to their colostomy. DISCUSSION: Colostomies for children in the low middle-income country Honduras have significant social and economic implications for low-income families. In ARM and HD, medical brigades can offer help for definitive surgical repair to overcome and shorten the period of a colostomy presence to improve physical and psychosocial impairment, especially when performed before the children reach the school age. TYPE OF STUDY: Cost Effectiveness Study. LEVEL OF EVIDENCE: II.