Humanistic and economic burden among caregivers of adults and children with transfusion dependent Beta-thalassemia: a mixed-methods study
AI Summary
Caregivers experience substantial quality of life impairment, with over 60% reporting mental health, daily activity and physical health problems.
High time and work burden: caregivers average 34.7 hours weekly in the US, 40.5 hours in Europe, with 33% and 43% work impairment.
Significant economic burden, with average annual out-of-pocket expenses $6000 in the US and $3348 in Europe, prompting healthcare policy and access needs.
Qual Life Res. 2026 Jul 26;35(9):248. doi: 10.1007/s11136-026-04341-6.
ABSTRACT
PURPOSE: To describe the humanistic and economic burden among informal caregivers of individuals with transfusion-dependent β-thalassemia (TDT) across the US and Europe.
METHODS: A mixed-methods study was conducted with qualitative interviews in the US and UK and an online survey in the US, UK, France, Italy, and the Netherlands. The survey included CarerQoL-7D, ZBI-12, and WPAI: CG and captured time spent providing informal care and out-of-pocket (OOP) expenses. Interviews were analyzed using the Framework Method, and survey data with descriptive analyses. Monetary values were standardized to US dollars (2025 USD).
RESULTS: Interviews with 10 caregivers revealed five key themes: (1) Need for a strong support network; (2) Burden of disease management and constant care; (3) Barriers and facilitators to optimal care; (4) Impact on caregivers’ daily life, work, and aspirations; and (5) Emotional distress and impacts on well-being. Seventy caregivers completed the survey. The CarerQoL-7D indicated adverse impacts on quality of life (QoL), with > 60% reporting mental health, daily activity, and physical health problems. On average, US and European caregivers spent 34.7 and 40.5 h per week performing caregiving activities, respectively. WPAI: CG results indicated overall work impairment of 33 and 43% among US and European caregivers, respectively. Average annual OOP expenses were $6000 in the US and $3348 in Europe.
CONCLUSION: Caregivers of people with TDT experience negative impacts on QoL and work productivity. There is a need for healthcare policies to address caregiver’s distinct challenges. Improving access to emerging therapies may ease caregiver and patient burden.
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