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Financial Burden Associated With Hospitalisation Among Families of Childhood Brain Tumours in Australia
Megumi Lim1, Natalie Bradford2,3,4, David Brain1
1Australian Centre for Health Services Innovation (AusHSI), School of Public Health and Social Work, Faculty of Health, Queensland University of Technology (QUT), Brisbane, Queensland, Australia.
Insights
Families of children with brain tumours face significant, ongoing financial strain primarily from lost income and daily expenses. Existing aid programs offer minimal relief, highlighting the need for better support systems.
Area of Science:
- Paediatric Oncology
- Health Economics
- Family Support Services
Background:
- Families of children with cancer experience considerable financial hardship, even with universal healthcare.
- Indirect costs (e.g., lost income, non-medical expenses) are often overlooked in economic analyses of financial aid effectiveness.
- Childhood brain tumours present unique challenges due to complex treatments and long-term impacts.
Purpose of the Study:
- To quantify the financial burden on families of children with brain tumours.
- To assess the impact of financial aid programmes on alleviating this burden.
- To identify predictors of financial strain in this population.
Main Methods:
- A Family Costing Survey was administered to 97 parents/carers of children with brain tumours at diagnosis, 12 months, and 24 months.
- The survey collected data on out-of-pocket expenses, productivity losses, and reimbursements.
- Statistical analyses, including generalized linear mixed models, were used to analyze cost data over time and identify predictors.
Main Results:
- Financial burden per hospital visit remained consistent across all time points.
- Productivity losses, accommodation, and childcare were the primary cost drivers.
- Regional and rural families faced significantly higher costs (2.06x and 1.87x, respectively) compared to metropolitan families.
- Reimbursements covered less than 25% of total expenses for most families.
Conclusions:
- Families of children with brain tumours experience substantial and persistent financial burdens.
- Current financial support systems provide limited relief.
- There is a critical need to strengthen financial aid and incorporate societal costs into economic evaluations for paediatric cancer care.
Background:
Families of children with cancer experience significant financial strain, even with universal healthcare. Indirect costs, such as productivity losses and non-medical expenses, are rarely included in economic evaluations, and little is known about how effectively financial aid programmes alleviate this burden. Childhood brain tumours warrant particular attention due to their complex treatment trajectories, high morbidity and substantial long-term impacts.
Methods:
Parents and carers of children diagnosed with brain tumours and treated at a tertiary paediatric cancer centre in Australia completed the Family Costing Survey at three time points: baseline (6-12 weeks post-diagnosis), 12 months and 24 months. The survey captured out-of-pocket costs, productivity losses and reimbursements. Descriptive statistics and non-parametric tests examined clinical and demographic predictors of financial burden; generalised linear mixed models were used to estimate costs over time.
Results:
Ninety-seven families were included. Financial burden per hospital visit did not differ significantly across the three time points and was driven predominantly by productivity losses, accommodation and childcare costs. Only a small proportion of families received reimbursements, which typically covered less than a quarter of total expenses. Geographic location and treatment type were the strongest predictors of burden: regional families incurred 2.06-times the costs, and rural families 1.87-times the costs, compared with metropolitan families.
Conclusions:
Families of children with brain tumours shoulder substantial and enduring financial burdens, with limited offset from existing support schemes.
Implications:
Strengthening and redesigning financial support systems is essential, and societal costs should be routinely incorporated into economic evaluations of paediatric cancer care.
