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

Authors

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

Published in

Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation. Volume 35. Issue 9. Jul 26, 2026. Epub Jul 26, 2026.

Abstract

To describe the humanistic and economic burden among informal caregivers of individuals with transfusion-dependent β-thalassemia (TDT) across the US and Europe.
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).
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.
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.

PMID:
42503076
Bibliographic data and abstract were imported from PubMed on 26 Jul 2026.

Read full publication at:
Please sign in to see all details.

Stats

1-terrible, 9-excellent. How would you rate this publication? Sign in in to submit your rating.

Post a comment

You need to be signed in to post comments. You can sign in here.

Comments

There are no comments yet.