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Purpose <p>To describe the humanistic and economic burden among informal caregivers of individuals with transfusion-dependent β-thalassemia (TDT) across the US and Europe.</p> Methods <p>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).</p> Results <p>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 &gt; 60% reporting mental health, daily activity, and physical health problems. On average, US and European caregivers spent 34.7 and 40.5&#xa0;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.</p> Conclusion <p>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.</p>

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Humanistic and economic burden among caregivers of adults and children with transfusion dependent β-thalassemia: a mixed-methods study

  • 期刊论文

  • 发表日期：

    2026年7月26日

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  • Lauren Lilly,
  • Duncan Brown,
  • Nanxin Li,
  • Jennifer Drahos,
  • Melanie Calvert,
  • Laurice Levine,
  • Neelam Dongha,
  • Zahra Pakbaz,
  • Farrukh Shah,
  • Ashley Valentine,
  • Bethany Franks,
  • Idaira Rodriguez Santana

摘要

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.