Parental health spillover effects of paediatric rare genetic conditions
A recent study on the health impact of rare genetic conditions on families has been published in the Quality of Life Research, co-authored by You Wu, Dr Ilias Goranitis from the Centre for Health Policy, University of Melbourne and Dr Hareth Al-Janabi from the University of Birmingham.
This study used health-related quality of life (HRQoL) outcomes collected from children with rare genetic conditions and their parents to examine the health utility loss in the affected parents and the relationship between child’s and parent’s HRQoL. Substantial spillover effects were found across genetic kidney diseases, mitochondrial diseases and neurodevelopmental disorders. The effect estimated was twice the size of other published family spillovers in the context of genetic and non-genetic conditions. The findings of this study highlight the importance of incorporating family health spillover effects into economic evaluations of genomic technologies and personalized medicine in the rare disease context. Overlooking such spillover effects may undervalue the benefits of diagnosis and management.
This study was a collaboration between the Health Economics Unit, Australian Genomics and Melbourne Genomics.
Further details and access to the article can be found here.