living with rare disease: experiences of diagnosis, health services use and
needs for psychosocial support. Matilda Anderson, Elizabeth J Elliott,
Yvonne A Zurynski, Orphanet Journal of Rare Diseases 2013, 8:22
doi:10.1186/1750-1172-8-22. Published: 11 February 2013.
children living with a rare disease report significant health and social burden,
however, few studies have systematically examined family needs by using
validated tools to assess the scope and extent of this burden. Our aim was to
develop a comprehensive survey to assess health, psychosocial and financial
impacts on Australian families caring for a child with a rare disease.
Australian families caring for children with genetic metabolic disorders
are adversely impacted by delays in diagnosis, lack of easy access to peer
support groups and lack of psychological support. Further research is needed to
estimate economic impact and to analyse health service delivery models for
children with rare diseases in Australia.
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