Health-related quality of life, educational and family outcomes in survivors of congenital diaphragmatic hernia.
PURPOSE: Congenital diaphragmatic hernia (CDH) survivors experience increased risk of medical and neurodevelopmental challenges. This study describes the health-related quality of life (HRQOL), special education utilization and the family impact among neonatal CDH survivors.
METHODS: A single-center prospective cohort of CDH survivors born between 1995 and 2006 was followed. Parents completed the PedsQL HRQOL index and a Family Impact survey to assess the need for medical equipment, home health services, and special education and quantify the burden placed on the family by their child's medical needs.
RESULTS: Parents of 32 survivors participated at a mean survivor age of 8 ± 4 years. Many survivors utilized medical equipment (62%), home health services (18%) and special education (28%). CDH survivor HRQOL (79 ± 17) did not differ significantly from that of healthy children (83 ± 15, p = 0.12). HRQOL was diminished among survivors who required special education (67 ± 8 vs 82 ± 3; p = 0.04) and those reporting increased Family Impact score (p = 0.001).
CONCLUSION: Many CDH survivors continue to require home medical equipment and home health services at school age. Most survivors have normal parent-reported HRQOL; however, the need for special education and higher family impact of neonatal CDH correlates with decreased HRQOL.
Pediatric surgery international
Adult; Education, Special; Female; Follow-Up Studies; Health Status; Hernias, Diaphragmatic, Congenital; Humans; Infant, Newborn; Male; Parents; Prospective Studies; Quality of Life; Surveys and Questionnaires; Survivors
Birth defect; Family impact; Quality of life; Special education
Fritz KA, Khmour AY, Kitzerow K, Sato TT, Basir MA. Health-related quality of life, educational and family outcomes in survivors of congenital diaphragmatic hernia. Pediatr Surg Int. 2019;35(3):315-320. doi:10.1007/s00383-018-4414-2