Perceptions of Pain in Haemophilia - a UK survey
Research type
Research Study
Full title
Perceptions of pain in haemophilia
IRAS ID
265546
Contact name
Paul McLaughlin
Contact email
Sponsor organisation
Haemnet
Duration of Study in the UK
0 years, 11 months, 31 days
Research summary
Haemophilia is a condition where a protein in the blood is reduced or missing which leads to bleeding. Most bleeds are in the muscles and joints and are acutely painful; this pain is usually well managed within hospital and homes with affected individuals being given appropriate pain killers.
Due to the side effects of many mainstream pain killers (bleeding from how well platelets stick together) many common pain killers cannot be used, leaving a choice of 'simple' pain killers like Paracetamol and strong painkillers like morphine which raise concern of addiction.
With repeated bleeding (most commonly into the knees, ankles and elbows) early arthritic changes occur. These can be seen even in young children who have had preventative bleed treatment. How we recognise this pain, how it impacts on daily lives and how we can treat this pain is not well understood.
This study aims to measure the amount and impact of pain on daily lives of people with haemophilia through a self reported questionnaire in a nationwide survey. This is the first part of a larger project which will assess how we recognise and treat long-term pain - this may be with pain killers but also physiotherapy and psychological therapy.REC name
North West - Greater Manchester South Research Ethics Committee
REC reference
19/NW/0608
Date of REC Opinion
30 Oct 2019
REC opinion
Further Information Favourable Opinion