Factors associated with quality of life for cystic fibrosis family caregivers-Reference-Cited by-同舟云学术

Factors associated with quality of life for cystic fibrosis family caregivers

Published:2023-10-16 Issue:1 Volume:3 Page:
ISSN:2731-4383
Container-title:Discover Mental Health
language:en
Short-container-title:Discov Ment Health

Author:

Nesser Whitney^ORCID,Snyder Scott,Driscoll Kimberly A.,Modi Avani C.

Abstract

AbstractCystic Fibrosis (CF) is a genetic and chronic disease affecting 32,100 people in the United States as of 2021, with a life expectancy of 56 years for people with CF (PwCF) born between 2018 and 2022. While there is extensive literature about cystic fibrosis, there are few studies examining the complexity and challenges experienced by family caregivers for PwCF. The aim of this study was to examine the Caregiver Quality of Life Cystic Fibrosis (CQOLCF) scale using data (N = 217) from two separate studies that used the scale to determine if its items represent multiple factors relevant to CF family caregiver QoL. Factor analysis was conducted on the Seven distinct factors were found with analysis of the CQOLCF. Factors were Existential Dread (12%), Burden (11%), Strain (7%), Support (7%), Positivity (6%), Finance (5%) and Guilt (3%). Study findings indicated it is important for healthcare providers and researchers who use the CQOLCF to be knowledgeable and aware of the multiple factors associated with quality of life in this population in addition to an overall quality of life score.

Publisher

Springer Science and Business Media LLC

Link

https://link.springer.com/content/pdf/10.1007/s44192-023-00046-1.pdf

Reference52 articles.

1. Cystic Fibrosis Foundation, Cystic Fibrosis foundation patient registry 2021 annual data report. 2022.

2. Cystic Fibrosis Foundation, 2022 Cystic fibrosis foundation patient registry highlights. 2023. Bethesda, Maryland.

3. McBennett KA, Davis PB, Konstan MW. Increasing life expectancy in cystic fibrosis: advances and challenges. Pediatr Pulmonol. 2022;57(1):S5-s12.

4. National Library of Medicine (U.S.). A Phase 3, randomized, double-blind, controlled study evaluating the efficacy and safety of VX-445 combination therapy in subjects with cystic fibrosis who are heterozygous for the F508del Mutation and a minimal function mutation (F/MF). 2018, June 15—2019, April 24; Identifier NCT03525444]. https://clinicaltrials.gov/study/NCT03525444.

5. National Library of Medicine (U.S.). A Phase 3, randomized, double-blind, controlled study evaluating the efficacy and safety of VX-445 combination therapy in subjects with cystic fibrosis who are homozygous for the F508del mutation (F/F). 2018, August 3—2018, December 28; Identifier NCT03525548]. https://clinicaltrials.gov/study/NCT03525548.