Assessment of Quality of Life in Hemophiliac Patients

• Conditions: Improvement of Quality of Life of Hemophiliac Patients

• Registration Number: NCT03159663
• Lead Sponsor: Assiut University

Brief Summary

Hemophilia is an X-linked congenital bleeding disorder caused by deficiency of coagulation factor VIII (in hemophilia A) or factor IX (in hemophilia B).

The deficiency is the result of mutations of the respective clotting factor genes.

Detailed Description

Hemophilia is rare, with only about 1 instance in every 10,000 births (or 1 in 5,000 male births) for hemophilia A and 1 in 50,000 births for hemophilia B.

According to the World Federation of Hemophilia, 400 000 people worldwide \& 5,307 people in Egypt are suffering from hemophilia.

Hemophilia A is more common than hemophilia B, representing 80-85 % of the total hemophilia population.

Signs and symptoms of hemophilia vary according to the level of clotting factors, mild, moderate and sever.

* Unexplained excessive bleeding from cuts or injuries

* Epistaxis without a known cause

* Many large or deep bruises

* Hamoarthritis

* Hematuria and Melena.

* Intracranial hemorrhage and death

* In infants, unexplained irritability

it is subjective representation of health, including not only physical,mental and social, but also emotional and everyday life dimensions in terms of well-being. Several definitions of QoL have been provided, the definition of the WHO viewing QoL as 'individuals perceptions of their position in life in the context of culture and value systems in which they live and in relation to their goals, expectation standards and concerns'

Study Timeline

• Status Verified: 2017-05
• Study First Submitted: 2017-05-17
• Study First Submitted QC: 2017-05-17
• Study First Posted: 2017-05-19
• Last Update Submitted: 2017-05-21
• Last Update Posted: 2017-05-23
• Study Start: 2017-06-01
• Primary Completion: 2017-06-01
• Study Completion: 2018-07-01

Recruitment & Eligibility

• Status: UNKNOWN
• Sex: Male
• Target Recruitment: 100

Inclusion Criteria

• • Hemophilia A & B
• Different age groups (pediatric - adolescence - adult )
• Home or hospitalized treatment
• complications such as joint swelling , spontaneous bleeding, etc....

Exclusion Criteria

• 1- Other causes of bleeding tendency such as liver failure, DIC, anticoagulant drugs, etc..

2- Diseases that affect joints such as osteoarthritis, SLE , etc.. 3- Mentally retarded patients.

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
evaluation and improvement of quality of life of hemophiliac patients	one year	by questionnaire

Trial Locations

Locations (1)

Assuit University; 🇪🇬 Assiut, Egypt