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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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>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 \u00a34209 and \u20ac3485, increasing to \u00a35391 and \u20ac9319 for average wages. Sensitivity analysis determined additional HRQoL decrements for caregivers with and without, SCD.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1186\/s41687-024-00784-y","type":"journal-article","created":{"date-parts":[[2024,9,26]],"date-time":"2024-09-26T08:03:33Z","timestamp":1727337813000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":9,"title":["Economic burden and quality of life of caregivers of patients with sickle cell disease in the United Kingdom and France: a cross-sectional study"],"prefix":"10.1186","volume":"8","author":[{"given":"Martin","family":"Besser","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sian Bissell","family":"O\u2019Sullivan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Siobhan","family":"Bourke","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Louise","family":"Longworth","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0009-1756-1190","authenticated-orcid":false,"given":"Giovanna Tedesco","family":"Barcelos","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yemi","family":"Oluboyede","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2024,9,26]]},"reference":[{"key":"784_CR1","volume-title":"Sickle cell disease","author":"A Sedrak","year":"2021","unstructured":"Sedrak A, Kondamudi NP (2021) Sickle cell disease. 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A general consent form was completed at the beginning of the survey asking participants if they agreed to be part of the research described to them. A second question confirmed that participants had received verbal consent from the person or people they care for and that they were content for the participant to share anonymous information about their diagnosis, treatment, and symptoms. Invited participants who did not provide consent could not complete any further questions in the survey.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent to participate"}},{"value":"Not applicable.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"Financial interests: MB received support from Novartis in the form of travel grants and support for a clinical service as well as advisory boards. Octapharma advisory board, Terumo honorarium and support for a patient event, Global Blood Therapeutics advisory board, Hemeo advisory board, Pfizer honorarium and educational support, Forte advisory board, Primeglobal honorarium, Agios advisory board and support for a patient event. SB, YO, and LL are full-time employees of Putnam PHMR. GTB is a full-time employee and equity ownership of Pfizer.","order":5,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"110"}}