Economic burden and quality of life of caregivers of patients with sickle cell disease in the United Kingdom and France: a cross-sectional study

• Published in: Journal of patient-reported outcomes 2024-09, Vol.8 (1), p.110-12, Article 110
• Main Authors: Besser, Martin, O’Sullivan, Sian Bissell, Bourke, Siobhan, Longworth, Louise, Barcelos, Giovanna Tedesco, Oluboyede, Yemi
• Format: Article
• Language: English
• Subjects: Adult; Anemia, Sickle Cell - economics; Anemia, Sickle Cell - nursing; Anemia, Sickle Cell - psychology; Anemia, Sickle Cell - therapy; Caregiver burden; Caregivers; Caregivers - economics; Caregivers - psychology; Cost of Illness; Cross-Sectional Studies; Female; France - epidemiology; Health-related quality of life; HRQoL; Humans; Male; Medicine; Medicine & Public Health; Mental health; Middle Aged; Productivity; Productivity loss; Quality of life; Quality of Life - psychology; Quality of Life Research; SCD; Sickle cell disease; Surveys and Questionnaires; United Kingdom
• ISSN: 2509-8020; 2509-8020
• DOI: 10.1186/s41687-024-00784-y

Background Sickle cell disease (SCD), a genetic blood disorder that affects red blood cells and oxygen delivery to body tissues, is characterized by haemolytic anaemia, pain episodes, fatigue, and end-organ damage with acute and chronic dimensions. Caring for patients with SCD imposes a high burden on informal caregivers. This study aims to capture the impact on health-related quality of life (HRQoL) and economic burden of caregiving for patients with SCD. Methods Validated instruments of HRQoL (EQ-5D-5L, Carer Quality of Life-7 dimensions [CarerQol-7D]) and productivity (Work Productivity and Activity Impairment Questionnaire: Specific Health Problem [WPAI: SHP]) were administered via a cross-sectional online survey to caregivers in the United Kingdom (UK) and France. Demographics, HRQoL, and economic burden data were analyzed using descriptive statistics. Economic burden was determined using country-specific minimum and average wage values. Subgroup analysis examined caregivers with and without SCD. Results Sixty-nine caregivers were recruited (UK, 43; France, 26), 83% were female, and 22% had SCD themselves. The mean (SD) caregiver EQ-5D-5L score was 0.66 (0.28) (UK, 0.62; France, 0.73), and the mean CarerQol-7D score was 80.69 (24.40) (UK, 78.72 [25.79]; France, 83.97 [22.01]). Mental health problems were reported in 72% and 70% of caregivers measured using the EQ-5D-5L and CarerQol-7D, respectively. Financial problems were reported by 68% of caregivers, with mean annual minimum wage productivity losses of £4209 and €3485, increasing to £5391 and €9319 for average wages. Sensitivity analysis determined additional HRQoL decrements for caregivers with and without, SCD. Conclusion Caring for patients with SCD impacts the HRQoL and economic burden of caregivers. Further research to support the complex needs of SCD caregivers is required. Plain English summary Caregivers play an important role in the lives of the people with sickle cell disease that they care for; however, their mental and physical health and their finances can be affected, particularly if their ability to work is impacted. The extent to which caring for a person with sickle cell disease impacts caregivers is not fully understood. In this study, 69 caregivers of a family member, partner, or friend with sickle cell disease in the United Kingdom or France completed an online survey to share their experiences about how caring for someone with sickle cell disease can impact a caregiver’s qualit