New study details burden for caregivers of children with rare liver disease
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Albireo Pharma Inc. announced the publication of the PICTURE study, which assessed the impact that progressive familial intrahepatic cholestasis has on caregivers, according to a company press release.
The multinational, retrospective, cross-sectional study, published in Orphanet Journal of Rare Disease, evaluated the effects of PFIC beyond the individuals with the disease and highlighted caregiver-reported concerns about quality of life, such as relationship strain, reduced sleep and impact on work productivity and daily activities.
“The PICTURE study reinforces what many of us intuitively know — the challenges of caregiving are ever present and often overwhelming and exhausting,” Emily Ventura, RN, BSN, CCRN, chief executive director of the PFIC Network and co-author of the study, said in the release. “From loss of sleep to stress on finances and relationships, PICTURE reinforces that we must recognize the burden this disease puts on families and the importance of providing resources for PFIC caregivers, while continuing to fund research to improve treatment and care.”
The PICTURE study revealed that although caregivers report fulfillment for their responsibilities, many also experience negative effects in health, quality of life and work productivity. Highlights of the study include:
- 82% of caregivers reported a strain on their relationship.
- 86% reported difficulty sleeping.
- 50% reported an impact of their child’s PFIC on their career-building efforts, with 73% of these citing a negative effect on career progression or working more hours.
- 36% of caregivers who were working in paid employment stopped working because of caregiving needs, missing an average of 2.8 years of employment.
According to the release, the median quality-of-life score among PFIC caregivers in the study was 67.7%, which is lower compared with scores reported in a similar study of caregivers for people with cystic fibrosis.
“The PICTURE study provides, for the first time, a look at what it’s really like for caregivers to live with the impact of this devastating, rare disease and the effect it has every day on families and adjacent communities,” Ron Cooper, president and CEO of Albireo, said in the release. “At Albireo, we are committed to being the gold standard partner in the fight against PFIC, and the findings from the PICTURE study reinforce the importance of providing access to Bylvay, the first approved drug treatment for patients with PFIC.”
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