Parental confidence when dosing children.
Research type
Research Study
Full title
Parental confidence when dosing children with long acting factor products in relation to sporting activity. A pilot study.
IRAS ID
147930
Contact name
Melanie Wilkinson
Contact email
Sponsor organisation
Hampshire Hospitals NHS Foundation Trust
Research summary
To explore parental confidence when dosing children with severe Haemophila A and B with long acting factor products, before they participate in sporting activity.
The goal of haemophilia treatment in childhood is to prevent or minimise spontaneous bleeds in a cost-effective manner which is practically acceptable to the child and his parents. Understanding of factor pharmacokinetics with both short and long-acting products has advanced and the principles of scientific factor dosing in relation to exercise are understood.
Use of short acting factor products may have fixed certain dosing strategies in relation to exercise in the child and parent’s mind. These beliefs and practices are poorly understood and this issue becomes particularly relevant as we move into the era of long-acting products where an instant ‘fix’ of treatment immediately prior to exercise may not be necessary.
Aims are to help Haemophilia Nurse Specialists learn from children with haemophilia and their parents how we should advise and support on future factor care in relation to sporting activity. This pilot study offers an opportunity for in depth focussed interviews. It is hoped that this study will generate insight into targeted interventional strategies which could be tested on a larger patient group.
Eligible parents of boys with severe Haemophila A or B under the age of 16, participating in or previously participated in clinical trials for long acting factor product for at least six months will be identified in two participating centres using purposive sampling which involves the selection of participants who have knowledge or experience of the area being investigated.
A qualitative research method will be proposed for this study using a naturalistic inquiry of semi-structured interviews to allow an in-depth investigation. It is estimated that the study will take approximately 12 months to complete.
Funding is by the Haemophilia Nurses Association.
REC name
North West - Liverpool Central Research Ethics Committee
REC reference
14/NW/1231
Date of REC Opinion
12 Aug 2014
REC opinion
Favourable Opinion