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PFIC Caregiver Burden

PICTURE Study Documents the High Impact of PFIC on Caregivers

Substantial Burden on
Caregivers Confirmed

A recently published study on the impact of PFIC on caregivers confirmed what the families of PFIC patients already know: caring for a PFIC patient places a substantial burden on caregivers.


The study documents the toll PFIC takes on them across a wide range of quality-of-life measures, including:

  • Mental and physical health
  • Productivity
  • Career prospects
  • Sleep
  • Relationships
  • Finances

The study suggests the impact of PFIC on caregivers’ quality of life may be similar to the impact of cystic fibrosis.

Although the study found that caregivers feel fulfilled by their caregiving responsibilities, they also reported negative impacts on health-related quality of life measures and work productivity.

In addition, nearly all caregivers reported an impact of caregiving responsibilities on sleeping (86%) and on relationships with partners, family or friends (82%).


About the PICTURE Study

The PICTURE study was a cross-sectional burden of illness study of physician and caregiver-reported information that took place from September 2020 through March 2021. Data was collected from [the caregivers of] 22 patients with PFIC type 1 or 2 in France, Germany, the United Kingdom, and the United States.

  • Physicians provided clinical and resource use data of PFIC patients at the time of consultation, via an electronic Case Report Form (eCRF)
  • Caregivers of PFIC patients, recruited by the physician as they attended a clinical appointment with the patient, completed online questionnaires about the impact of the disease on their lives
  • The study was conducted under the guidance of an Expert Reference Group (ERG), consisting of a representative of academia as principal investigator, partnering charity and advocacy representatives as well as experts in the field of liver diseases
  • Funding for this study was provided by Albireo Pharma