Geographical inequity in out-of-pocket costs for families of children with congenital heart disease requiring neurodevelopment support: an examination of policy scenarios using economic modelling.

backgroundOut-of-pocket costs represent care-limiting financial burden among families of children with congenital heart disease at risk of adverse neurodevelopmental outcomes. Neurodevelopmental follow-up care is often centred around major paediatric cardiac centres which can contribute to geographic inequity for people who reside in rural, regional or remote areas. This study examined out-of-pocket costs in three potential policy scenarios with neurodevelopment-related care location foci being either: specialist paediatric cardiac centre (Tertiary); nearest paediatric centre (Secondary); nearest community-based services (Primary).

methodsThis modelling study used person-level stochastic microsimulations informed by a representative population cohort to estimate out-of-pocket costs under the three policy scenarios. Residence and service provider geographical locations were mapped using geographical information system software. Probabilistic estimates for out-of-pocket costs (direct healthcare, direct non-healthcare, indirect productivity costs) for the first five years of life for four illustrative categories of neurodevelopmental support requirements (surveillance only, mild, moderate and severe neurodevelopmental delays) were generated from 10,000 microsimulations of 1000 families in each scenario.

resultsOut-of-pocket costs for families of children who require neurodevelopmental support were substantial across all scenarios and locations of residence, with indirect productivity costs representing the largest burden. Direct travel costs for attending healthcare appointments were also substantial, and differentially affected those who resided in rural, regional or remote areas. With existing healthcare funding support structures, direct healthcare costs were a comparatively smaller contributor to financial burden. Overall, care provision at the nearest paediatric centre (Secondary) scenario was most likely to mitigate financial burden on families. Out-of-pocket costs for families of children with severe delays were approximately 8.7 to 15.4 times higher than for families of children requiring surveillance only. Findings were robust to sensitivity analyses.

conclusionOut-of-pocket costs for neurodevelopmental support for families of children with congenital heart disease are substantial. These costs differentially affect families of children with more severe developmental delays, as well as those who reside in rural, regional and remote areas. Policy strategies to shift loci of services closer to home have potential to alleviate some out-of-pocket costs for families, with services based at the nearest secondary paediatric centre likely to reduce geographic inequity.