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“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.”
Care-related quality of life (CRQoL) and health-related quality of life (HRQoL) of the caregivers of pediatric patients with juvenile idiopathic arthritis (JIA) were impacted by socioeconomic factors, such as employment and support to carry caregiving tasks, and child HRQoL, according to a study published in Pediatric Rheumatology.1 The study also indicated that CRQoL and HRQoL were negatively associated with receiving either paid or unpaid help.
“Both the disease and its treatment significantly impact the quality of life and work productivity of the caregivers, who are most often the parents,” investigators explained. “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.”
A cross-sectional analysis of baseline data on caregivers of patients with JIA from Canada and the Netherlands were collected from the “Canada-Netherlands Personalized Medicine Network in Childhood Arthritis and Rheumatic Diseases (UCAN CANDU),” between June 2019 through September 2021. UCAN CANDU is an ongoing, prospective multicenter study focused on personalized care strategies in JIA. Eligible patients had a new diagnosis of JIA or were starting or discontinuing biological therapy. Data included the patient’s residence, age, sex, disease duration, disease status, JIA classification, and treatment information at baseline. Caregiver characteristics included age, sex, employment status, education level, and caring context.
Assessments included the CRQoL questionnaire (CarerQoL), proxy-reported Youth 5-Level version of EuroQoL (EQ-5D-5L-Y), and adult EQ-5D-5L. A multivariate analysis determined the relationship between caregiver CRQoL and HRQoL and patient, caregiver, and caring context measurements.
In total, 250 caregivers were included, with most of the caregivers self-reporting as females (n = 193) with a median age of 42 years. Most children with JIA had active disease (n = 187, 75%) at baseline. Negative domains with “lot of” or “some” problems were physical health (n = 98, 39.2%) and mental health (n = 86, 34.4%).
Mean CarerQoL scores were 82.7 (standard deviation [SD] 11.4) and mean EQ-5D-5L utility score was 0.87 (SD 0.16). Child HRQoL and employment was positively associated with both caregiver CarerQoL and EQ-5D-5L utility scores (p < 0.05). Children experiencing anxiety and/or depression were positively associated with an increase in anxiety and/or depression of caregivers. Additionally, lower caregiver’s CarerQoL utility scores were linked to more anxiety and/or depression of their children. Parental concerns included problems with relational issues, daily activities, finances, and physical health.
Both paid and unpaid help had a negative relationship with both scores (p < 0.05). Those who were employed, male, and had a child with a higher EQ-5D-5L-Y utility score were more likely to have an optimal health utility score.
Algorithms are not yet available for the 5-level EQ-5D-Y instrument, which limits the study. Additionally, adult value sets were used as a placeholder, although research suggests that adult value sets are not appropriate measurements to calculate EQ-5D-Y utility scores. Dutch CarerQoL-7D value sets were used in assessing quality of life because Canadian value sets are not currently available. However, differences in values among health states were similar and investigators do not believe these affected results. Future studies evaluating duration of the disease and these relations in more flexible models, including non-linear models, are warranted.
“The findings presented in this study highlight the need to further investigate the factors associated with caregiver CRQoL and HRQoL,” investigators concluded. “Furthermore, there is a need for research on the impact of practical application of the CRQoL utility scores on economic evaluation studies.”
Grazziotin LR, Currie G, Twilt M, et al. Factors associated with care- and health-related quality of life of caregivers of children with juvenile idiopathic arthritis. Pediatr Rheumatol Online J. 2022;20(1):51. Published 2022 Jul 23. doi:10.1186/s12969-022-00713-7