Caregiver quality of life and burden in rare genetic diseases in South Korea.
WHY IT MATTERS
This research identifies specific factors that increase caregiver burden in rare genetic diseases, which could help healthcare systems in South Korea and elsewhere design better support programs and counseling services for families managing these conditions.
A study in South Korea looked at how caring for someone with a rare genetic disease affects the caregiver's life and stress levels. Researchers surveyed 159 caregivers and found that caring for these patients creates real challenges that hurt caregivers' quality of life. The study examined what factors—like the patient's condition, available treatments, and genetic counseling—make caregiving easier or harder.
Caregiver quality of life and burden in rare genetic diseases in South Korea. Abstract: Caregivers of individuals with rare genetic diseases experience substantial and persistent challenges that negatively affect their quality of life (QoL) and increase their burden. This study explored factors associated with caregiver QoL and burden in South Korea, focusing on patient characteristics, treatment availability, and genetic counseling experience. A cross-sectional survey was conducted with 159 caregivers of patients with rare genetic diseases at a tertiary general hospital. Caregiver QoL and burden were measured using the Caregiver QoL Scale and the Korean version of the Burden Assessment Scale. Demographic and clinical characteristics were also collected. Statistical analyses were performed using R software. Group differences were evaluated using Welch t tests, Wilcoxon rank-s Authors: Choi et al. Journal: Medicine MeSH: Humans, Republic of Korea, Quality of Life, Female, Male, Cross-Sectional Studies, Caregivers, Adult, Middle Aged, Rare Diseases