Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026
Humanistic and economic burden among caregivers of adults and children with sickle cell disease and recurrent vaso-occlusive crises.
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Lilly Lauren, Brown Duncan, Li Nanxin, Drahos Jennifer, Calvert Melanie, Mason Anthony, Pakbaz Zahra, Shah Farrukh, Valentine Ashley, Franks Bethany, Santana Idaira Rodriguez
Аннотация
PURPOSE: To describe the humanistic burden and economic impact among informal caregivers of individuals with sickle cell disease (SCD) and recurrent vaso-occlusive (VOCs) across North America and Europe.
METHODS: A mixed-methods study was conducted with qualitative interviews in the US and UK and an online survey in the US, Canada, UK, France, Germany, Italy, Spain, and the Netherlands. The survey included CarerQoL-7D, WPAI:CG, and explored time spent providing informal care, out-of-pocket expenses, and health inequity. Interviews were analyzed using the Framework Method and survey data with descriptive analyses. Monetary values were standardized to US dollars.
RESULTS: Interviews with 10 caregivers identified five key themes: (1) Need for a strong support network; (2) Providing constant care/attention; (3) Ensuring optimal care; (4) Major lifestyle adjustments; and (5) Impact on caregiver's emotional and physical wellbeing. 173 caregivers completed the survey. The CarerQoL indicated adverse impacts on health-related quality of life (HRQoL) with > 70% reporting problems due to mental health, difficulty combining caregiving with daily activities, and physical health. On average, US and European/Canadian caregivers spent 53.7 and 32.0 h per week providing care. WPAI:CG indicated overall work impairment of 52% and 42% among caregivers in the US and Europe/Canada. Average annual out-of-pocket expenses were $13,300 in the US and $4,050 in Europe/Canada.
CONCLUSION: Caregivers of people with SCD with recurrent VOCs experience negative impacts on HRQoL, work productivity, and out-of-pocket expenses. Policies addressing caregiver challenges are urgently needed, and improved access to emerging therapies may ease the burden experienced by caregivers and patients.
METHODS: A mixed-methods study was conducted with qualitative interviews in the US and UK and an online survey in the US, Canada, UK, France, Germany, Italy, Spain, and the Netherlands. The survey included CarerQoL-7D, WPAI:CG, and explored time spent providing informal care, out-of-pocket expenses, and health inequity. Interviews were analyzed using the Framework Method and survey data with descriptive analyses. Monetary values were standardized to US dollars.
RESULTS: Interviews with 10 caregivers identified five key themes: (1) Need for a strong support network; (2) Providing constant care/attention; (3) Ensuring optimal care; (4) Major lifestyle adjustments; and (5) Impact on caregiver's emotional and physical wellbeing. 173 caregivers completed the survey. The CarerQoL indicated adverse impacts on health-related quality of life (HRQoL) with > 70% reporting problems due to mental health, difficulty combining caregiving with daily activities, and physical health. On average, US and European/Canadian caregivers spent 53.7 and 32.0 h per week providing care. WPAI:CG indicated overall work impairment of 52% and 42% among caregivers in the US and Europe/Canada. Average annual out-of-pocket expenses were $13,300 in the US and $4,050 in Europe/Canada.
CONCLUSION: Caregivers of people with SCD with recurrent VOCs experience negative impacts on HRQoL, work productivity, and out-of-pocket expenses. Policies addressing caregiver challenges are urgently needed, and improved access to emerging therapies may ease the burden experienced by caregivers and patients.