Quality of life of individuals with familial intellectual disability and their carers and spouses

Background Little is known about health-related quality of life (HRQoL) in familial intellectual disability. Economic evaluations of interventions for familial intellectual disability require HRQoL measured through utility data. Aims We aimed to estimate HRQoL in individuals with familial intellectual disability and their carers and spouses, and identify factors associated with HRQoL. Method Families with at least one member with familial intellectual disability were recruited and completed a tailored questionnaire. HRQoL was measured with the Assessment of Quality-of-Life 8D for carers and spouses, and the Health Utilities Index 2 (HUI2) and 3 (HUI3) for individuals with intellectual disability. Results A total of 108 carers and 35 spouses, caring for 171 individuals with intellectual disability, completed the survey. Health utility values for carers (0.58) and spouses (0.63) were significantly lower than age- and gender-adjusted population norms (0.8) ( p < 0.05). Utility values for individuals with intellectual disability were 0.51 (HUI2) and 0.31 (HUI3), also significantly below age-adjusted norms ( p < 0.05). In carers, approximately half reported a mental health condition, and multivariate regression showed that having a mental health disorder, financial stress and caring for someone with aggressive behaviour were associated with lower HRQoL. In individuals with intellectual disability, greater disability severity and need for full-time supervision were associated with lower HRQoL, whereas living with their carer was associated with higher HRQoL. Conclusions Familial intellectual disability is associated with significantly lower quality of life of individuals with intellectual disability, their carers and their spouses. HRQoL across the family may help guide planning of health and social support, and demonstrate to policy makers the additional support needs for these families.