Assessment of Quality of Life in Hemophiliac Patients

NCT ID: NCT03159663

Last Updated: 2017-05-23

Basic Information

• Recruitment Status: UNKNOWN
• Total Enrollment: 100 participants
• Study Classification: OBSERVATIONAL
• Study Start Date: 2017-06-01
• Study Completion Date: 2018-07-01

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'

Conditions

Improvement of Quality of Life of Hemophiliac Patients

Study Design

• Observational Model Type: COHORT
• Study Time Perspective: PROSPECTIVE

Eligibility Criteria

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.

• Minimum Eligible Age: 10 Years
• Maximum Eligible Age: 70 Years
• Eligible Sex: MALE
• Accepts Healthy Volunteers: No

Sponsors

Assiut University

OTHER

Sponsor Role: lead

Responsible Party

peter khalil

assiut

Responsibility Role: PRINCIPAL_INVESTIGATOR

Locations

Assuit University

Asyut, , Egypt

Countries

Egypt

Other Identifiers

Assiut1987

Identifier Type: -

Identifier Source: org_study_id