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Alagille Syndrome
Conference Roundup

Economic and emotional burden high for caregivers of kids with ALGS

Posted on

This multi-national study used compared the sleep, work productivity, and mental health of caregivers of children with ALGS to the general United Kingdoms population.

Of the 95 caregivers of children with ALGS who completed an online survey, 60% had “changed, reduced, or stopped their employment altogether as a result of caregiving.” Caregivers who remained employed typically missed 7 hours of paid work per week due to caregiving.

Nearly all the respondents (80%) said their finances were negatively impacted due to caregiving.

The impact that caregiving has on mental health is also evident. Survey results demonstrate that caregivers experience higher rates of moderate-to-severe anxiety and depression than the general UK public and that caregivers of children who had not undergone a liver transplant had significantly higher levels of anxiety and depression than caregivers of children who had undergone a liver transplant.

Pruritus, the most common symptom of ALGS, also takes its toll on caregivers.

Itch was reported to negatively impact 74% of all caregivers’ sleep, with 96% of caregivers of children with ALGS who had not had a liver transplant reporting that their sleep was negatively impacted per week.

Reference
Quadrado L, et al. Caregiver burden associated with caring for a child with Alagille syndrome: A multi-national, quantitative analysis. Presented at: NASPGHAN 2022.

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