Assessment of Quality of Life in Thalassemic Patients at Assiut University Hospital: A Single-center Experience
Study Details
Study Description
Brief Summary
The thalassemias are a group of inherited hematologic disorders caused by defects in the synthesis of one or more of the hemoglobin chains [1]. Thalassemia are classified into the alpha (α) and (β) thalassemia, which contain deficits in (α) and (β) globin production respectively (α)thalassemia are caused by decreased production of alpha-globin chains from chromosome 16. There are 4 types of (α) thalassemia: thalassemia silent carrier thalassemia carrier . Hemoglobin H disease thalassemia major Beta-thalassemia are caused by point mutations or more rarely deletions in the β-globin gene on chromosome 11, leading to reduced (β+) or absent (β0) synthesis of the β chains of hemoglobin. Imbalances of globin chains cause hemolysis and impair erythropoiesis [4-7]. β-thalassemia can be classified into: Beta Thalassemia major, Beta Thalassemia intermedia, Beta Thalassemia minor Thalassemia is a chronic disease that presents a range of serious clinical and psychological challenges.
The effects of thalassemia on physical health can lead to physical deformity, growth retardation, and delayed puberty [9, 10]. Its impact on physical appearance, e.g., bone deformities and short stature, also contributes to a poor self-image [10, 11]. Severe complications such as heart failure, cardiac arrhythmia, liver disease, endocrine complications, and infections are common among thalassemia patients [8, 12].
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Detailed Description
The problems mentioned do not only affect patients' physical functioning but also their emotional functioning, social functioning and school functioning, leading to impaired Health-related quality of life (HRQOL) of the patients [13]. QOL is a phrase used to refer to an individual's total wellbeing. This includes all emotional, social, and physical aspects of the individual's life. Health-related quality of life (HRQOL) Moreover, the term health-related quality of life (HRQOL) is often described as: "A term referring to the health aspects of quality of life, generally considered to reflect the impact of disease and treatment on disability and daily functioning; it has also been considered to reflect the impact of perceived health on an individual's ability to live a fulfilling life.[18-19] HRQOL is comprised of a number of dimensions of influence. Seven are commonly agreed upon
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Physical well-being: the experience of physical symptoms such as pain, dyspnea, or nausea.
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Functional well-being: the ability to participate in normal daily activities such as work and leisure pursuits.
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Emotional well-being: this is comprised of both positive affective states (e.g. happiness, peace of mind) and negative affective states (e.g. sadness, anxiety).
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Family well-being: the ability to maintain family relationships and communication.
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Social functioning: the ability to participate and enjoy social roles and activities.[20]
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Treatment satisfaction: including financial concerns.
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Sexuality/intimacy: including concerns about body image.
Study Design
Outcome Measures
Primary Outcome Measures
- Assisment of Quality of life in thalassemic patient [baseline]
assess the health-related quality of life among thalassemic patients attending Clinical hematology unit, Assiut University Hospital in a questionnaire manner
Eligibility Criteria
Criteria
Inclusion Criteria:
- Thalassemic patients more than 18 years old.
Exclusion Criteria:
- Thalassemic patients less than 18 years old. Patients with other causes of aneamia. Patients with other causes of liver cirrhosis. Patients with other causes of renal diseases.
Contacts and Locations
Locations
No locations specified.Sponsors and Collaborators
- Assiut University
Investigators
None specified.Study Documents (Full-Text)
None provided.More Information
Publications
- Galanello R, Cao A. Gene test review. Alpha-thalassemia. Genet Med. 2011 Feb;13(2):83-8. doi: 10.1097/GIM.0b013e3181fcb468. No abstract available.
- Khodashenas M, Mardi P, Taherzadeh-Ghahfarokhi N, Tavakoli-Far B, Jamee M, Ghodrati N. Quality of Life and Related Paraclinical Factors in Iranian Patients with Transfusion-Dependent Thalassemia. J Environ Public Health. 2021 Aug 18;2021:2849163. doi: 10.1155/2021/2849163. eCollection 2021.
- Shafique F, Ali S, Almansouri T, Van Eeden F, Shafi N, Khalid M, Khawaja S, Andleeb S, Hassan MU. Thalassemia, a human blood disorder. Braz J Biol. 2021 Sep 3;83:e246062. doi: 10.1590/1519-6984.246062. eCollection 2021.
- quality of life in thalassemia