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Assessment of Quality of Life in Hemophiliac Patients

Assessment of Quality of Life in Hemophiliac Patients

Status
UNKNOWN
Phases
Unknown
Study type
Observational
Source
ClinicalTrials.gov
Registry ID
NCT03159663
Enrollment
100
Registered
2017-05-19
Start date
2017-06-01
Completion date
2018-07-01
Last updated
2017-05-23

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Improvement of Quality of Life of Hemophiliac Patients

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'

Interventions

None listed

Sponsors

Assiut University
Lead SponsorOTHER

Study design

Observational model
COHORT
Time perspective
PROSPECTIVE

Eligibility

Sex/Gender
MALE
Age
10 Years to 70 Years

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.

Design outcomes

Primary

MeasureTime frameDescription
evaluation and improvement of quality of life of hemophiliac patientsone yearby questionnaire

Countries

Egypt

Outcome results

None listed

Source: ClinicalTrials.gov · Data processed: Feb 4, 2026