Assessment of Quality of Life in Hemophiliac Patients

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.

Study Overview

• Status: Unknown
• Conditions: Improvement of Quality of Life of Hemophiliac Patients

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 Type: Observational
• Enrollment (Actual): 100

Contacts and Locations

Study Locations

• Egypt
  • Assiut, Egypt
    • Assuit university

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 10 years to 70 years (Child, Adult, Older Adult)
• Accepts Healthy Volunteers: N/A
• Genders Eligible for Study: Male

• Sampling Method: Non-Probability Sample

Study Population

all patients

Description

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 Plan

How is the study designed?

Design Details

• Observational Models: Cohort
• Time Perspectives: Prospective

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
evaluation and improvement of quality of life of hemophiliac patients	by questionnaire	one year

Collaborators and Investigators

• Sponsor: Assiut University

Study record dates

Study Major Dates

• Study Start (Anticipated): June 1, 2017
• Primary Completion (Anticipated): June 1, 2017
• Study Completion (Anticipated): July 1, 2018

Study Registration Dates

• First Submitted: May 17, 2017
• First Submitted That Met QC Criteria: May 17, 2017
• First Posted (Actual): May 19, 2017

Study Record Updates

• Last Update Posted (Actual): May 23, 2017
• Last Update Submitted That Met QC Criteria: May 21, 2017
• Last Verified: May 1, 2017

More Information

Terms related to this study

• Other Study ID Numbers: Assiut1987

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: Undecided