Assessment of Quality of Life in Thalassemic Patients at Assiut University Hospital: A Single-center Experience

NCT05790980 | Unknown

• 1 other identifier: quality of life in thalassemia
• Study Type: observational
• Target: 68
• Locations: 0 countries
• Sites: N/A

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 \[8, 12\].

Conditions

Thalassemia

Outcome Measures

Primary Outcomes (1)

• Assisment of Quality of life in thalassemic patient

  assess the health-related quality of life among thalassemic patients attending Clinical hematology unit, Assiut University Hospital in a questionnaire manner

  baseline

Interventions

Abdominal ultrasound DEVICE

Abdominal US to exclude splenomegaly and hepatomegaly or liver cirrhosis Echocardiology to show cardiac dysfunction

Also known as: Echocardiology

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Thalassemic patients more than 18 years old.

You may qualify if:

• Thalassemic patients more than 18 years old.

You may not qualify if:

• 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.

Sponsors & Collaborators

• Assiut University: lead

Related Publications (3)

• 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.

  PMID: 34457009 BACKGROUND

• 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.

  PMID: 34495151 BACKGROUND

• 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.

  PMID: 21381239 BACKGROUND

MeSH Terms

Conditions

Thalassemia

Condition Hierarchy (Ancestors)

Anemia, Hemolytic, Congenital; Anemia, Hemolytic; Anemia; Hematologic Diseases; Hemic and Lymphatic Diseases; Hemoglobinopathies; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities

Central Study Contacts

Reham Abdelraheem

CONTACT

01005558459; rehamabdelraheem128@gmail.com

Ahmad Farrag

CONTACT

01061461306; Drahmedfarag2005@yahoo.com

Study Design

• Study Type: observational
• Observational Model: CASE CONTROL
• Time Perspective: RETROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Assiut University

Study Record Dates

• First Submitted: February 15, 2023
• First Posted: March 30, 2023
• Study Start: April 1, 2023
• Primary Completion: March 1, 2025
• Study Completion: June 1, 2025
• Last Updated: March 30, 2023

Record last verified: 2023-03