Quality of life, productivity loss, and mental health service utilization among parents of children with neuroinflammatory disorders: A cross-sectional study

BACKGROUND: Children with neuroinflammatory disorders (NDs) require caregiving, affecting parental health and employment. This study assessed parents' productivity losses, mental health services use, health-related quality of life (HRQoL), and care-related QoL. METHODS: This cross-sectional study enrolled children with NDs and parents at a single center. Data on productivity losses and mental health services use for both parents were collected. Respondent parents' HRQoL and care-related QoL were measured using Health Utilities Index (HUI3) and Care-related Quality of Life (CarerQol) instrument. HUI3 scores were compared to Canadian parental norms. Annual parental costs per two-parent household and societal costs were estimated. RESULTS: Forty-seven parent-child dyads participated. Mean ages were 43.76 (SD 6.31) years for respondent parents and 12.00 (SD 3.34) years for children. Work and/or usual activity disruptions were reported by 86 % (31/36) of respondent parents and 78 % (28/36) of partners. Twenty-two percent (8/36) of respondent parents and 8 % (3/36) of partners used mental health services due to caregiving stress. Median (IQR) annual household costs for parents and society were CAD 2,767.87 (1,414.78-7,894.43). Mann-Whitney U test revealed no statistical difference in HUI-3 scores between parents of children with NDs (n = 46, median:0.93) and Canadian population parental norms (n = 2,799, median:0.93), W = 426434, p = 0.13. Mean CarerQol-7D and VAS scores were 85.97 (SD11.94) and 7.68 (SD1.08), respectively. CONCLUSION: Parents of children with NDs reported work and/or daily activity disruptions and household costs; their HRQoL was comparable to Canadian parental norms. Larger studies with comparison groups of parents of healthy children are needed to confirm these findings.