Families living with rare chronic disease: health related out-of-pocket expenses


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A team at the Australian Paediatric Surveillance Unit (APSU) are conducting a pilot study about health related out-of-pocket expenses in families living with a rare chronic disease.

Health related out-of-pocket expenses (e.g. items not covered by Medicare or private health insurance) are a significant burden for families who have a child or children living with a rare chronic condition. There is a lack of acknowledgement of the complexity of rare disease by our health systems and families affected by rare disease often “fall in between the cracks”, resulting in inadequate access to government funded health services.

Families are often left to seek essential healthcare for their children outside of the government funded health system. Families may also be dealing with lost income from one or both parent as they become primary caregivers to their child with chronic and complex health needs.

This study aims to:
1. Determine the cost of out-of-pocket expenses incurred by families living with a child who has a rare disease.
2. Determine the health services, medications equipment, health related consumables and transport necessary to care for their child, but not covered by Medicare, hospital-based services or private health insurance.
3. Determine the impacts of these out of pocket expenses on the family.

Results from this study will be used to improve access to government funded healthcare and to social security benefit payments.

You can take part in this study if your family has at least one child aged 0 – 21 years of age with a diagnosed rare disease or a rare syndrome not yet diagnosed.

You must be willing to take part in a total of 8 surveys. An initial survey, then a survey each month for 6 consecutive months and a final exit survey. You must be able to read and understand English well enough to complete the surveys.

Participation in this research study is voluntary.

This study is being run by The Australian Paediatric Surveillance Unit (APSU). They are based at the Kids Research Institute, at The Children’s Hospital at Westmead.

This study is being funded by the Australian Mitochondrial Disease Foundation (AMDF) and Tuberous Sclerosis of Australia (TSA).

If you would like more information on this project, please get in touch with Dr Marie Deverell on 02 9845 3005 or email apsu@chw.edu.au.