Quality of life in children with juvenile arthritis linked to caregivers’ quality of life
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Higher health-related quality of life scores in children with juvenile idiopathic arthritis correspond to higher career- and health-related quality of life scores for their caregivers, according to data published in Pediatric Rheumatology.
“Qualitative research has identified that caregivers face many challenges that affect their well-being, including balancing their child’s demands with their own psychological needs when feeling depressed or stressed, and accompanying the child to the frequent health appointments,” Luiza R. Grazziotin, PhD, of the Cumming School of Medicine at the University of Calgary, in Canada, and co-authors wrote. “To the best of our knowledge, there are no studies reporting [career-related quality of life (CRQoL) of caregivers of children with JIA, and on the relation between the health of caregivers and that of the child cared for.”
To investigate the impact of care- and health-related quality of life (HRQoL) of caregivers on children with JIA, Grazziotin and colleagues conducted a cross-sectional analysis of baseline data collected as part of the Canada-Netherlands Personalized Medicine Network in Childhood Arthritis and Rheumatic Disease study. The study included three groups of patients, including those with a new diagnosis, children starting a biologic therapy and children discontinuing a biologic therapy. The data were collected from June 2019 through September 2021.
To assess quality of life scores, the researchers used the CRQoL questionnaire, EQ-5D-5L and proxy-reported Youth 5-Level version of EuroQoL. In addition, although the data included patients from both the Netherlands and Canada, researchers treated the patient sets as equivalent. Electronic case report forms were completed by pediatric rheumatologists at baseline, and caregivers were asked to complete the questionnaire packages. The questionnaires were also available virtually.
The analysis included a total of 250 caregivers, 71% of whom were from the Netherlands while 77% were women. The mean CarerQoL score was 82.7, while the mean EQ-5D-5L utility score was 0.87 (SD = 0.16). Child HRQoL scores and employment of the caregiver both demonstrated a positive relationship on caregiver CarerQoL and EQ-5D-5L utility scores (P < .05). Meanwhile, the act of receiving help, whether paid or unpaid, had a negative impact on those scores (P < .05).
Regarding caregiver quality of life scores, 95.2% of respondents reported “a lot of” or “some” fulfilment from performing care tasks, while 38.4% of respondents reported receiving “no support” from family or friends if needed.
“We conclude that HRQoL of children with JIA is associated with their caregiver CRQoL and HRQoL,” Grazziotin and colleagues wrote. “In addition, to understand the impact of JIA on families, we need to consider not only children’s disease activity status, but also socioeconomic factors such as employment and support to carry care-giving tasks.
“The findings presented in this study highlight the need to further investigate the factors associated with caregiver CRQoL and HRQoL,” they added.
References:
Min M, et al. JBI Evid Synth.2019;doi:10.11124/JBISRIR-D-19-00301.
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