Exploring the impact of severe haemophilia on lifestyle
Research type
Research Study
Full title
Exploring the impact of severe haemophilia on lifestyle
IRAS ID
159620
Contact name
Janet Holt
Contact email
Duration of Study in the UK
0 years, 3 months, 27 days
Research summary
This Q methodological study aims to contribute to the understanding of how individuals with severe haemophilia and those involved with their care perceive the impact of haemophilia on lifestyle. Haemophilia requires regular intra-venous infusions of medication to reduce the risk of bleeding into joints/soft tissues. Even if regular and thus preventative treatment is given certain activities, sports, types of employment and other lifestyle choices may need to be curtailed. Patients aged 16 to 65 years with severe haemophilia will be invited to participate in the study to obtain broad view of the impact of haemophilia. The parents of younger affected individuals will also be invited take part as they are the main caregivers of this group. The views of health professions from the Leeds Haemophilia Comprehensive Care Centre will be sought as healthcare professionals play an active role in providing information, treatment and advice in the management of this condition.
To collect the data participants will review a series of statements, printed on cards, around lifestyle and haemophilia. They will then rank them based on how strongly they agree or disagree with the statement. Once all statements have been positioned and the participant is content with their placement the participant will be invited to complete a booklet with any thought or ideas they had while completing the task.
Data will be analysed using PQ method a dedicated software package used in Q methodology.REC name
Yorkshire & The Humber - Leeds East Research Ethics Committee
REC reference
14/YH/1266
Date of REC Opinion
4 Dec 2014
REC opinion
Favourable Opinion