Accepted for/Published in: JMIR Public Health and Surveillance
Date Submitted: Feb 12, 2025
Open Peer Review Period: Feb 12, 2025 - Apr 9, 2025
Date Accepted: May 8, 2025
(closed for review but you can still tweet)
Quality of Life Among Family Caregivers of Individuals With Rare Diseases: A Web-Based Population Study on the Validity and Reliability of the Polish WHOQOL-BREF Questionnaire
ABSTRACT
Background:
Caring for individuals with rare diseases (RDs) presents unique challenges that can significantly impact caregivers’ quality of life (QoL). The WHO Quality of Life-BREF is a widely used tool for assessing QoL across different populations.
Objective:
This study examines the QoL of caregivers of individuals with RDs and evaluates the psychometric properties of the WHOQOL-BREF in this population.
Methods:
A self-administered, anonymous, computer-assisted online survey was conducted among family caregivers of individuals with RDs in Poland between March and August 2024. Due to the lack of a national RD patient registry, participants were recruited through convenience sampling via RD patient associations, foundations, and organizations. Eligibility criteria included being over 18 years old, speaking Polish, being a caregiver of a person with a confirmed RD diagnosis, and providing informed consent. The survey included sociodemographic questions and the Polish version of the WHOQOL-BREF, which assesses QoL across four domains: physical health, psychological well-being, social relationships, and environmental factors. Internal consistency was assessed using Cronbach’s alpha, and confirmatory factor analysis (CFA) was conducted to examine the instrument’s structural validity.
Results:
A total of 942 caregivers of persons with various RDs participated in the study. The WHOQOL-BREF demonstrated good internal consistency, with Cronbach’s alpha values ranging from 0.69 (social relationships) to 0.84 (psychological). CFA supported the four-domain structure, though model fit was improved with correlated error terms. QoL scores varied by demographic characteristics, with younger female caregivers reporting lower psychological and social well-being. The physical health domain was most strongly associated with overall QoL. Factorial invariance analysis confirmed the applicability of the WHOQOL-BREF across different caregiver subgroups.
Conclusions:
The WHOQOL-BREF is a reliable and valid instrument for assessing QoL among caregivers of individuals with RDs, though the social relationships domain may require further refinement. Caregivers experience varying QoL outcomes depending on demographic factors, highlighting the need for targeted support interventions. Future research should explore cultural adaptations and potential supplementary modules to enhance the instrument’s applicability in caregiver populations.
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