Impact on family of survivors of congenital diaphragmatic hernia repair: a pilot study

Abstract

Background/Purpose We hypothesized that long-term impact on the family of survivors of congenital diaphragmatic hernia (CDH) would vary based on the child's current clinical problems and clinical severity, family income, insurance, and out-of-pocket expenses. Methods Parents of a retrospective cohort of 53 CDH survivors who underwent repair at Children's Hospital Boston in Massachusetts from 1991 through 1999 completed the Impact on Family Scale (IFS), the Child Health Ratings Inventories General Health Module Parent Report, a rating of their child's clinical severity, an inventory of current clinical problems, and family demographics. Statistical tests of the primary outcome, the IFS total score, were performed. Results Survivors of CDH had a median age of 8 years. Most families had private insurance (78%) and annual income levels higher than the federal poverty level (96%). The IFS total score was correlated with child's clinical severity ( r = 0.71, P < .001) and was worse among families of children with current clinical problems ( P = .01), families with public insurance ( P = .01), and those with out-of-pocket expenses of at least $500 ( P = .002). Regression analysis identified the independent effect of clinical severity on family impact ( P < .001). Conclusion Family impact is profound and long-standing at a median of 8 years after surgery for a subset of CDH survivors with more severe conditions and current clinical problems.