Health‐related out‐of‐pocket expenses for children living with rare diseases ‐ tuberous sclerosis and mitochondrial disorders: A prospective pilot study in Australian families.

Aim: We aimed to describe health‐related out‐of‐pocket (OOP) expenses incurred by Australian families living with children with chronic and complex diseases. Methods: A prospective pilot study of OOP expenses in families with children with tuberous sclerosis (TS) or mitochondrial disorders (MD) in 2016–2017. An initial survey assessed the family's financial situation, child's health functioning and estimated previous 6 months' and lifetime OOP expenses. Thereafter, families completed a survey each month for 6 months, prospectively tracking OOP expenses. Results: Initial surveys were completed by 13 families with 15 children; median age 7 years (range: 1–12); 5 with MD, 10 with TS. All families reported OOP expenses: 38% paid $2000 per annum, more than double the annual per‐capita OOP costs reported for Australia by the Organisation for Economic Co‐operation and Development. Eight families estimated $5000–$25 000 in OOP expenses over their child's lifetime and 62% of mothers reduced or stopped work due to caring responsibilities. Eleven families paid annual private health insurance premiums of $2000–$5122, but 72% said this was poor value‐for‐money. Prospective tracking by eight families (9 children) identified the median OOP expenditure was $863 (range $55–$1398) per family for 6 months. OOP spending was associated with visits to allied health professionals, non‐prescription medicines, special foods, supplements and disposable items. Eight families paid for 91 prescription medications over 6 months. Conclusion: All families caring for children with TS or MD reported OOP expenses. A larger study is needed to explore the affordability of health care for children living with a broader range of chronic diseases. [ABSTRACT FROM AUTHOR]