Abstract
BackgroundRare chronic diseases of childhood are often complex and associated with multiple health issues. Such conditions present significant demands on health services, but the degree of these demands is seldom reported. This study details the utilisation of hospital services and associated costs in a single case of surfactant protein C deficiency, an example of childhood interstitial lung disease.MethodsHospital records and case notes for a single patient were reviewed. Costs associated with inpatient services were extracted from a paediatric hospital database. Actual costs were compared to cost estimates based on both disease/procedure-related cost averages for inpatient hospital episodes and a recently implemented Australian hospital funding algorithm (activity-based funding).ResultsTo age 8 years and 10 months the child was a hospital inpatient for 443 days over 32 admissions. A total of 298 days were spent in paediatric intensive care. Investigations included 58 chest x-rays, 9 bronchoscopies, 10 lung function tests and 11 sleep studies. Comprehensive disease management failed to prevent respiratory decline and a lung transplant was required. Costs of inpatient care at three tertiary hospitals totalled $966,531 (Australian dollars). Disease- and procedure-related cost averages underestimated costs of paediatric inpatient services for this patient by 68%. An activity-based funding algorithm that is currently being adopted in Australia estimated the cost of hospital health service provision with more accuracy.ConclusionsHealth service usage and inpatient costs for this case of rare chronic childhood respiratory disease were substantial. This case study demonstrates that disease- and procedure-related cost averages are insufficient to estimate costs associated with rare chronic diseases that require complex management. This indicates that the health service use for similar episodes of hospital care is greater for children with rare diseases than other children. The impacts of rare chronic childhood diseases should be considered when planning resources for paediatric health services.
Highlights
Rare chronic diseases of childhood are often complex and associated with multiple health issues
Of the 37% of children in Australia living with a chronic disease, 10% are affected by asthma and the rest are affected by a diverse range of conditions [2], many of which are rare [3]
Actual costs of hospital services were extracted from databases of the Management Support and Analysis Unit, Sydney Children’s Hospitals Network (SCHN)-which comprises of two paediatric hospitals in Sydney, Australia (The Children’s Hospital at Westmead and Sydney Children’s Hospital, Randwick) and Health Information Services, Alfred Health, Melbourne, Australia
Summary
Rare chronic diseases of childhood are often complex and associated with multiple health issues. Such conditions present significant demands on health services, but the degree of these demands is seldom reported. Children with rare chronic conditions often require care by multiple paediatric specialists and allied health professionals, necessitating effective coordination of services and service providers. Rare diseases of childhood present demands on health services and families [4]. A lack of clinical guidelines for many rare conditions, coupled with limited experience and expertise among health professionals in the broader community contribute to the increased burden on services [5]. The burden of rare chronic paediatric disease on families, the health system and the economy is likely to be substantial, empirical evidence for this is lacking
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