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Alagille Syndrome

Parents of Children with Rare Diseases Have Significantly Lower Health-related Quality-of-Life

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Pediatric rare genetic conditions negatively impact parental health, according to a study published in the journal Quality of Life Research.

Health-related quality-of-life (HRQoL) data from parents and their children with genetic kidney diseases, mitochondrial diseases, epileptic encephalopathies, and brain malformations, were collected.

Compared to the general public, parents of children with rare diseases had significantly lower HRQoL (- 0.06; 95% CIs – 0.08, – 0.04). There was a positive association between parent’s and their children’s health. The mean magnitude of HRQoL loss in parents was estimated to be 33% of the HRQoL loss observed in children (95% CIs 21%, 46%).

The authors concluded that pediatric rare genetic conditions are linked to considerable parental health “spillover.”

“This highlights the importance of including health effects on family members and caregivers into economic evaluation of genomic technologies and personalised medicine,” they wrote. “Overlooking spillover effects may undervalue the benefits of diagnosis and management in this context. This study also expands the knowledge of family spillover to the rare disease spectrum.

 

Reference

Wu Y, Al-Janabi H, Mallett A, et al. Parental health spillover effects of paediatric rare genetic conditions [published online ahead of print, 2020 Apr 7]. Qual Life Res. 2020;10.1007/s11136-020-02497-3. doi:10.1007/s11136-020-02497-3

 

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