ArticleThe patient2024
Health-Related Quality-of-Life Impacts Associated with Transfusion-Dependent β-Thalassemia in the USA and UK: A Qualitative Assessment.
Article in The patient, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers.
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Who cites it
9 citing papers in PubMed, 12 citations in OpenAlex.
- Improvements in health-related quality of life in patients with transfusion-dependent β-thalassemia after exagamglogene autotemcel.Blood advances · 2025Trial
- The Effectiveness of a Resilience Enhancement Program on the Quality of Life Among Adolescents with Thalassemia in Nakhon Si Thammarat Province, Thailand.Healthcare (Basel, Switzerland) · 2026Article
- Socio-economic disparities in clinical outcomes of transfusion-dependent β-thalassaemia patients.Journal of health, population, and nutrition · 2026Article
- Direct and indirect medical costs associated with transfusion-dependent beta-thalassemia in Brazil, Thailand, and India.Therapeutic advances in hematology · 2026Article
- Explainable AI framework for improved Thalassemia mental health classification and feature selection.PloS one · 2026Article
- Exploring the role of consanguinity in thalassemia prevalence in Pakistan: an in-depth analysis of genetic and cultural factors affecting public health.Annals of medicine and surgery (2012) · 2025Review
- Health-related quality of life and economic impacts in adults with transfusion-dependent β-thalassemia: findings from a prospective longitudinal real-world study.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Impact of hand grip strength reduce on health related quality of life in patients with transfusion-dependent thalassemia insights from the SF-36 survey: a cross-sectional analysis.Frontiers in medicine · 2025Article
- Appropriateness of the EQ-5D-5L in capturing health-related quality of life in individuals with transfusion-dependent β-thalassemia: a mixed methods study.Health and quality of life outcomes · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors at 5 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundIndividuals living with transfusion-dependent β-thalassemia (TDT) experience reduced health-related quality of life due to fatigue and chronic pain, which cause disruptions to daily life. Currently, limited qualitative data exist that describe these impacts.
objectiveThis study aimed to examine the ways in which symptoms and current treatments of TDT impact health-related quality of life, to holistically describe the humanistic burden of TDT, and to identify the unmet needs of individuals living with TDT.
methodsAdults (aged ≥ 18 years) with TDT and caregivers of adolescents (aged 12‒17 years) with TDT participated in semi-structured one-on-one virtual interviews and focus group discussions. Interviews were conducted in the USA and UK and lasted approximately 60 minutes. After transcription, the interviews were analyzed thematically using a framework approach.
resultsA total of ten interviews/focus group discussions (six interviews and four focus group discussions) were conducted with 14 adults with TDT and two caregivers of adolescents with TDT. A framework analysis revealed five themes describing health-related quality of life (negative impacts on daily activities, social life, family life, work and education, and psychological well-being) and three themes describing the lived experience of TDT (impact of red blood cell transfusions and iron chelation therapy, treatment, and stigma). Physical, psychological, and treatment-related factors contributed to negative impacts on daily activities, social and family life, and work and education. Concerns about reduced lifespan, relationships and family planning, and financial independence were detrimental to participants' mental well-being. Participants reported having high resilience to the many physical and psychological challenges of living with TDT. A lack of TDT-specific knowledge among healthcare professionals, particularly regarding chronic pain associated with the disease, left some participants feeling ignored or undermined. Additionally, many participants experienced stigma and were reluctant to disclose their disease to others.
conclusionsIndividuals living with TDT experience substantial negative impacts on health-related quality of life that disrupt their daily lives, disruptions that are intensified by inadequate healthcare interactions, demanding treatment schedules, and stigma. Our study highlights the unmet needs of individuals living with TDT, especially for alternative treatments that reduce or eliminate the need for red blood cell transfusions and iron chelation therapy.
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