Assessment of Quality of Life in Hemophiliac Patients

Improvement of Quality of Life of Hemophiliac Patients Clinical Trial

Official title:

Assessment of Quality of Life in Hemophiliac Patients

Clinical Trial Details — Status: Enrolling by invitation

Administrative data

• NCT number: NCT03159663
• Other study ID #: Assiut1987
• Status: Enrolling by invitation
• Phase: N/A
• First received: May 17, 2017
• Last updated: May 21, 2017
• Start date: June 1, 2017
• Est. completion date: July 1, 2018

Study information

• Verified date: May 2017
• Source: Assiut University
• Contact: n/a
• Is FDA regulated: No
• Study type: Observational

Clinical Trial 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.

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'

Recruitment information / eligibility

• Status: Enrolling by invitation
• Enrollment: 100
• Est. completion date: July 1, 2018
• Est. primary completion date: June 1, 2017
• Gender: Male
• Age group: 10 Years to 70 Years

Eligibility

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.

Related Conditions & MeSH terms

• Improvement of Quality of Life of Hemophiliac Patients

Locations

Country	Name	City	State
Egypt	Assuit University	Assiut

Sponsors (1)

Lead Sponsor	Collaborator
Assiut University

Country where clinical trial is conducted

Egypt, 

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	evaluation and improvement of quality of life of hemophiliac patients	by questionnaire	one year