Parental health spillover effects of paediatric rare genetic conditions
You Wu, Hareth Al-Janabi, Andrew Mallett, Catherine Quinlan, Ingrid E Scheffer, Katherine B Howell, John Christodoulou, Richard J Leventer, Paul J Lockhart, Zornitza Stark, Tiffany Boughtwood, Ilias Goranitis
QUALITY OF LIFE RESEARCH | SPRINGER | Published : 2020
PURPOSE: The complexity and severity of rare genetic conditions pose substantial burden to families. While the importance of spillovers on carers' health in resource allocation decisions is increasingly recognised, there is significant lack of empirical evidence in the context of rare diseases. The objective of this study was to estimate the health spillovers of paediatric rare genetic conditions on parents. METHODS: Health-related quality-of-life (HRQoL) data from children with rare genetic conditions (genetic kidney diseases, mitochondrial diseases, epileptic encephalopathies, brain malformations) and their parents were collected using the CHU9D and SF-12 measures, respectively. We used tw..View full abstract
Awarded by National Health and Medical Research Council (NHMRC)
The study as part of "Australian Genomic Health Alliance: Preparing Australia for Genomic Medicine" project was funded by a National Health and Medical Research Council (NHMRC) Targeted Call for Research grant (GNT1113531). This work was also supported by the Melbourne Genomics Health Alliance and grants from the Royal Children's Hospital Foundation.