PFIC caregivers face prevalent health-related quality of life burden
Despite feeling fulfilled in their role as caregivers to individuals with progressive familial intrahepatic cholestasis (PFIC), many caregivers report reduced health-related quality of life (HRQoL), according to a study.
Of the 22 PFIC caregivers who participated in the retrospective, cross-sectional PICTURE study, 68% were 30-49 years old and the majority (77%) were mothers. The average age of the patients they were caring for was 8.2 years old.
“Most caregivers reported fulfillment in their caregiving responsibilities, but problems with mental and physical health, finances, and relationships,” the authors wrote.
Key highlights from the study include:
-Median CarerQoL-7D score was 67.7 (out of 100); mean CarerQoL-VAS score for general happiness was 5.7 (out of 10)
-Worse HRQol outcomes and greater impacted sleep were reported with PFIC2 versus PFIC1
-PFIC 2 caregivers also reported a higher number of missed workdays
-Scores were higher among those whose children had no specified surgeries
-86% reported impact on sleeping
-82% reported impact on personal relationships
-Formal care support was reported in no caregivers
Mighiu C, O’Hara S, Ferri Grazzi E, et al. Impact of progressive familial intrahepatic cholestasis on caregivers: caregiver-reported outcomes from the multinational PICTURE study. Orphanet J Rare Dis. 2022;17(1):32. doi: 10.1186/s13023-022-02177-0. PMID: 35109890; PMCID: PMC8809495.