Almost one in five young people with haemophilia in England and Wales are increasing the risk of major bleeds by not taking adequate treatment.
That's according to a new study by the University of Hertfordshire. The research is this country's first major nationwide study into treatment adherence among young people with haemophilia.
It found that 18% of those aged from 12 - 25 with haemophilia are not sticking to treatment plans because of a lack of social support and lack of understanding about the severity of their condition.
Haemophilia is an inherited bleeding disorder caused by a deficiency in one of the blood clotting (coagulation) factors. For people affected by severe haemophilia, the deficiency can cause spontaneous internal bleeding. Most young people with severe haemophilia in the UK follow a preventative treatment regimen (prophylaxis) consisting of several intravenous injections of factor replacement concentrate each week.
Whilst prophylaxis reduces bleeds and improves the quality of life, the burden associated with regular prophylactic injections can have a major impact on a patients' everyday life. Especially for young people.
The research found there are three primary 'psychosocial' reasons why young people do not adhere to the prophylaxis (or prophylactic treatment) despite the obvious risks to their health. These were:
- The perceived impact the treatment can have on their everyday lives
- A lack of social support for those on a prophylactic treatment regimen
- A lack of understanding about prophylaxis effectiveness and its importance in treating the condition.
It also found that young people were more likely to stick to the treatment when they perceived the need for prophylaxis to be greater than their concern over taking it. And that a strong emotional reaction to a bleed may encourage young people to keep to their treatment regimen.
Dr Sandra Van Os, from the University's School of Life and Medical Sciences and lead author of the study, said: 'interestingly, the findings suggest that in addition to social support and treatment beliefs, emotional responses in relation to haemophilia, such as fear, anger or distress, may also contribute to better adherence.
'But, in a busy clinic it may not always be easy to tease out whether someone is simply concerned about their prophylactic treatment, or whether they are experiencing negative emotions that could actually contribute towards a motivation to adhere better.'
The aim of the study was to provide evidence of psychosocial predictors of adherence and explore the association between non-adherence and number of bleeds and hospital visits for young people.
Dr Van Os added: 'This research has a specific focus on young people rather than including patients of all age groups. This is important since young people are likely to have had a very different experience than the older generations, due to the revolutionary improvements in treatment achieved during the past two decades. Another key issue is rather than asking parents or healthcare professionals to estimate adherence as previous studies have done, this study asked young people directly.'
The research team worked with 13 haemophilia centres across England and Wales and surveyed just under 20% of the total population of people aged 12-25 who have severe haemophilia and are on prophylaxis.
Dr Van Os concluded: 'It is important that patients receive sufficient and appropriate social support in order to stay on track with their treatment.
'It will also be beneficial to reduce potential concerns about prophylaxis, and to assess whether patients understand their treatment sufficiently well and the role they themselves have to play in its effectiveness.'
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