ArticleJournal of patient-reported outcomes2024
Economic burden and quality of life of caregivers of patients with sickle cell disease in the United Kingdom and France: a cross-sectional study.
Article in Journal of patient-reported outcomes, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
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Who cites it
8 citing papers in PubMed.
- Adherence to ready-to-use therapeutic food in older children with sickle cell anaemia and severe acute malnutrition: a mixed-methods study in a low-income setting.BMJ global health · 2025Trial
- Humanistic and economic burden among caregivers of adults and children with sickle cell disease and recurrent vaso-occlusive crises.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Article
- Empirical estimate for the indirect healthcare costs of sickle cell disease from a retrospective cohort study in England between 2007 and 2019.BMC health services research · 2026Article
- PaCE CKD: A Multinational Survey of Health-Related Quality of Life in Patients with Chronic Kidney Disease and Caregivers.Advances in therapy · 2026Article
- Clinical, humanistic, and economic burden of sickle cell disease in The Jazan Region, Saudi Arabia.PloS one · 2026Observational
- Low depression rates among caregivers of young children with sickle cell disease: a rapid report.Journal of sickle cell disease · 2026Article
- Financial health and well-being of rural female caregivers of older adults with chronic illnesses.BMC geriatrics · 2025Article
Corrections and comments
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Authors and funding
6 authors.
Funding
Abstract
backgroundSickle 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.
methodsValidated 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.
resultsSixty-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.
conclusionCaring for patients with SCD impacts the HRQoL and economic burden of caregivers. Further research to support the complex needs of SCD caregivers is required.
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