Quality of Life of and Economic Burden on Caregivers of Individuals With Sickle Cell Disease in the UK and France: A Cross-Sectional Survey

OBJECTIVES: The quality of life (QoL) of caregivers of individuals with sickle cell disease (SCD), a rare genetic disorder, can be substantially affected by their responsibilities. This study aims to capture the impact of caring for individuals with SCD on caregivers’ QoL and to estimate the economic burden using validated questionnaires.

METHODS: An online survey was developed and administered to caregivers of individuals with SCD in the UK and France. The survey included sociodemographic questions and the EQ-5D-5L, CarerQol-7D, and Work Productivity and Activity Impairment: Specific Health Problem (WPAI:SHP). Descriptive analyses were undertaken to summarize demographics, health-related QoL (HRQoL), and economic burden data. Productivity losses were valued using the human capital method.

RESULTS: A total of 69 caregivers (UK: 43, France: 26), caring for 84 individuals with SCD, participated in the study; 83% were female, and 22% of caregivers were also individuals with SCD. The mean (SD) caregiver EQ-5D-5L score was 0.66 (0.28) (UK, 0.62 [0.2]; France, 0.73 [0.3]). The mean (SD) CarerQol-7D score was 81 (24) (UK, 78 [25]; France, 84 [22]). A majority of caregivers reported mental health problems: 72% and 64% by EQ-5D-5L and CarerQoL-7D, respectively; 68% reported financial problems due to their caring responsibilities. Mean missed work hours per year was 442 and 322 in the UK and France, respectively. Monetized and by country, this resulted in a yearly mean productivity loss of £4,212 and €3,456 (monthly £350, €290; minimum wage) rising to £9,312 and €5,376 (monthly £776, €448; average wage).

CONCLUSIONS: Caregivers of individuals with SCD have reduced HRQoL, demonstrated by an age- and gender-matched utility decrement of 0.23 compared with published population norms. The high percentage of mental health problems reported by caregivers, along with high levels of productivity loss, illustrates both the psychosocial and economic burden of caring for individuals with SCD.