Investigating and interpreting the use, costs, accessibility and organisation of healthcare services among children with cerebral palsy

Abstract

Background and Rationale: Cerebral palsy is an umbrella term for a group of non-progressive disorders of movement and posture. Compared to their typically-developing peers, children with cerebral palsy are at an increased risk of multiple comorbidities and frequent acute illnesses that affect almost all of the organ systems, and as a consequence, have significantly greater medical care needs. There is growing interest internationally in investigating the patterns of medical service use among children with complex conditions such as cerebral palsy. It is hoped that a greater understanding of their healthcare needs could assist with decision making around health service delivery for this group.

Aims: The aims of this thesis were to describe the patterns of medical service use among children with cerebral palsy, identify factors associated with the frequency and type of medical services used by this group, and compare their hospital admission and emergency department presentation characteristics with those of the general population. A secondary aim was to explore with parents the financial implications of having a child with additional medical care needs.

Methods: Population cohorts of children with cerebral palsy and data linkage techniques, as well as survey methods, were used. The Victorian Cerebral Palsy Register was linked to the emergency department and inpatient databases of the Australian state of Victoria’s two paediatric hospitals to examine service use at these centres, and to the Victorian Admitted Episodes Dataset and Victorian Emergency Minimum Dataset to investigate statewide admissions and emergency department presentations respectively among population cerebral palsy cohorts. A purposefully-designed survey gathered information from parents on other medical services used, and on how they cope financially in light of their child’s medical care needs.

Results: Of 2,183 children with cerebral palsy, 814 had at least one emergency department presentation and 1,443 had at least one admission at one of Victoria’s two paediatric hospitals over a five-year period, accounting for an average of 1,400 admissions and 700 emergency department presentations at the two hospitals each year. A higher than expected proportion of paediatric emergency department presentations were triaged as high urgency (71%) and resulted in a hospital admission (44%). Children with severe and/or complex cerebral palsy had more frequent admissions and emergency department presentations to the two hospitals, as well as higher re-admission rates. A similar pattern was observed when admissions and emergency department presentations at all hospitals in the state were investigated, those children with more severe and/or complex cerebral palsy having more hospital episodes each year. Compared to the general population of children, those with cerebral palsy had longer lengths of stay (median of 3 vs 2 nights; p<0.001), and more procedures (median of 2 vs 1 procedures; p<0.001) per multi-day admission, and more emergency department presentations that were preceded by an ambulance arrival (27% vs 8%; p<0.001), triaged as being of high urgency (66% vs 34%; p<0.001) and resulted in a hospital admission (38% vs 13%; p<0.001). Ultimately, they accrued higher hospital charges per episode. The types of paediatric specialists most often seen in outpatient settings were general or developmental paediatricians, orthopaedic surgeons, rehabilitation specialists, and neurologists. Most children received medical services from a number of different providers, in multiple different settings, and this continued into adolescence and early adulthood. Overall, the number and complexity of hospital episodes, the number of professionals involved in their medical management, and the proportion of families reporting financial difficulties all rose with increasing cerebral palsy severity and complexity.

Conclusions and Significance: Through a series of data linkage studies and a purposefully-designed parent survey, this thesis provides new knowledge about medical service use among children with cerebral palsy. It provides, for the first time, objective population-level data on which future decisions around health service delivery for this patient group can be based, as well as highlighting some future research priorities.