Some young hemophilia patients may not be sticking to their prophylaxis regimens for psychosocial reasons, according to research published in PLOS ONE.
The study included 78 hemophilia patients, ages 12 to 25, treated at 13 centers in England and Wales.
“This research has a specific focus on young people rather than including patients of all age groups,” said study author Sandra Van Os, a PhD student at the University of Hertfordshire in Hatfield, UK.
“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 2 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 results showed that 18% of the patients did not adhere to their prophylaxis regimens. Most non-adherence was due to forgetting treatment rather than intentionally skipping it.
But there were a few psychosocial reasons for non-adherence. Patients reported non-adherence due to a lack of social support and the perceived impact of prophylaxis on their everyday lives.
Patients also lacked understanding about the effectiveness of prophylaxis and its importance in treating hemophilia.
The patients were more likely to adhere to treatment when they perceived the need for prophylaxis to be greater than their concern over taking it.
And the study suggested a strong emotional reaction to a bleed may encourage young people to adhere to their treatment regimen.
“Interestingly, the findings suggest that, in addition to social support and treatment beliefs, emotional responses in relation to hemophilia, such as fear, anger, or distress, may also contribute to better adherence,” van Os said.
“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.”
This research was supported by external, peer-reviewed funding from the Bayer Haemophilia Awards Programme (Caregiver Award awarded to van Os).
