Background: Individuals 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.
Objective: This 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.
Methods: Adults (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.
Results: A 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.
Conclusions: Individuals 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.
Download full-text PDF |
Source |
|---|---|
| http://www.ncbi.nlm.nih.gov/pmc/articles/PMC11189963 | PMC |
| http://dx.doi.org/10.1007/s40271-024-00678-7 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Trends in Israel's Medical Administration subspecialty, 1987-2022.
Isr J Health Policy Res
January 2025
School of Medicine, Faculty of Medical and Health Sciences and the Coller School of Management, Tel Aviv University, Tel Aviv, Israel.
Background: Israel is unique in offering a formal subspecialty in Medical Administration and mandating it for physicians applying for senior roles. Data on the prevalence and characteristics of these specialists are limited.
Methods: The national registry of licensed physicians was used to identify all living physicians who completed the Medical Administration subspecialty by December 31, 2022.
Using group model building to frame the commercial determinants of dietary behaviour in adolescence - findings from online system mapping workshops with adolescents, policymakers and public health practitioners in the Southwest of England.
BMC Public Health
January 2025
National Institute for Health Research (NIHR) School for Public Health Research (SPHR), Newcastle, UK.
Background: In England, 23% of children aged 11 start their teenage years living with obesity. An adolescent living with obesity is five times more likely to live with obesity in adult life. There is limited research and policy incorporating adolescents' views on how they experience the commercial determinants of dietary behaviour and obesity, which misses an opportunity to improve services and policies that aim to influence the prevalence of childhood obesity.
View Article and Find Full Text PDFTime-dependent, patient-centered perceptions of quality measures for total joint arthroplasty: a cross-sectional, choice modeling study.
BMC Musculoskelet Disord
January 2025
VOICES Health Policy Research Center, Department of Orthopaedic Surgery, Stanford University, 450 Broadway Street MC: 6342, Redwood City, CA, 94603, USA.
Background: As value-based care arrangements continue to assess quality of care and costs, comprehensive and patient-centered definitions of quality of care are required. While patient-reported outcome measures are increasingly integrated into quality assessments following total joint arthroplasty (TJA), patient perceptions of quality paired with the phase of surgical care has not been described. The purpose of this study was to assess how TJA patients perceive measures of quality of care and assess if these perceptions change based on the phase of care.
View Article and Find Full Text PDFPlastome data provides new insights into population differentiation and evolution of Ginkgo in the Sichuan Basin of China.
BMC Plant Biol
January 2025
Chengdu Botanical Garden, Chengdu Park Urban Plant Science Research Institute, Chengdu, 610083, Sichuan, China.
Background: Ginkgo biloba L., an iconic living fossil, challenges traditional views of evolutionary stasis. While nuclear genomic studies have revealed population structure across China, the evolutionary patterns reflected in maternally inherited plastomes remain unclear, particularly in the Sichuan Basin - a potential glacial refugium that may have played a crucial role in Ginkgo's persistence.
View Article and Find Full Text PDFAim: Chronic Kidney Disease (CKD) has emerged as a global public health concern. People with the most advanced stage of CKD require renal replacement therapies, either dialysis (the focus of this study) or a kidney transplant. Research on CKD has primarily focused on its clinical, epidemiological, and public health aspects.
View Article and Find Full Text PDFWant AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!