Quality of Life in Adult Patients With Severe Haemophilia in Turkey

A Nationwide Multicenter Study on the Quality of Life in Adult Patients With Severe Haemophilia in Turkey

Status

UNKNOWN

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT01623960

Acronym

TurkHaemQoL

Enrollment

500

Registered

2012-06-20

Start date

2012-10-31

Completion date

2014-02-28

Last updated

2012-06-20

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

Conditions

Haemophilia

Keywords

severe haemophilia, quality of life

Brief summary

The primary aim of this study is to evaluate the overall quality of life in adult patients with severe haemophilia (an inherited bleeding disorder affecting mainly men) in Turkey and to assess the impact of certain disease and drug related factors (treatment modality, presence of viral disease, inhibitor, etc.) on the quality of life.

Detailed description

Haemophilia is an inherited bleeding disorder affecting one in 10000 male births worldwide. People with severe haemophilia usually suffer from recurrent life threatening bleeds (e.g. into the brain, digestive system or abdomen) and/or disabling degenerative disease of weight bearing joints (e.g. knees, elbows and ankles)resulting from haemorrhage into the joints. Daily activities of people with haemophilia has been shown to be dramatically hampered by the resultant joint damage. Evaluation of quality of life issues in people with severe haemophilia would help to create awareness of their problems and limitations. This would also set up the scene for developing policies to improve the treatment options/facilities and social life of the patients. Current study aims to assess the quality of life of adult patients with severe haemophilia in a developing country (Turkey) by using a validated Quality of Life Questionnaire (Turkish version of Haem-A-QoL).

Interventions

None listed

Study design

Observational model

COHORT

Time perspective

CROSS_SECTIONAL

Eligibility

Sex/Gender

MALE

Age

18 Years to No maximum

Healthy volunteers

Inclusion criteria

* age equal or greater than 18 years * male gender * factor VIII or IX level equal or below 1% * patients that are willing to participate and have given a written consent

Exclusion criteria

* age less than 18 years * females * factor levels above 1%

Contacts

Primary ContactM.Cem Ar, MD, PhD

mcemar68@yahoo.com+905326818890

Outcome results