Adolescents with severe haemophilia using prophylaxis. Adherence to prophylactic treatment is lower in adolescents than in children and adults. High adherence levels are needed to prevent patients from bleeds. Little is known about underlying reason for non-adherence to prophylaxis in adolescents with haemophilia. To increase adherence in adolescents, it is important to understand motivators, facilitators and barriers.
The aim of this study was to clarify the underlying reason for non-adherence to prophylaxis in haemophilia, from an adolescent perspective.
A qualitative study was executed, using a thematic analysis. Three focus group interviews and nine individual interviews were conducted in Dutch adolescents (14-25 years) with haemophilia using prophylactic treatment. Patients were interviewed about the impact of haemophilia on their lifes and about adherence to their treatment. Interviews were transcribed, coded and analysed in an iterative process, leading towards the development of themes.
During the interviews, it became clear that adolescents at different ages thought different about their (adherence to) prophylaxis.
In the first phase, adolescents (fully) rely on others (parents/ physicians) concerning their prophylaxis. Parents instructed them to take their prophylaxis, at which days, or even prepared and administered the prophylaxis. These ‘young’ adolescents mentioned that they didn’t think about their prophylaxis. Due to a great parental role, the majority of patients in had a high adherence. In the second phase, when adolescents were becoming a bit older, it was observed that adherence behaviour was based on balancing between their perception of ‘feeling safe’ and ‘being normal’. Adolescents wanted to be just like their peers (‘being normal’), e.g. during partying, sport activities or drinking alcohol. Yet, all respondents mentioned that, most of the times they also wanted to feel safe concerning their haemophilia. Most respondents learned gradually from their experience with prophylaxis, they learned what their personal boundary was. This resulted in a variety of adherence levels within adolescents, because some respondents noticed that they could permit themselves to be less adherent. In the third phase, when the adolescents were becoming young adults, they developed a personal ‘standard’ concerning prophylaxis. They acquired a personal regimen what works for them; e.g. ‘I don’t have that many bleeds, a can permit myself to skip approximately 3 times per month’.
A balance between feeling save and being normal based on previous experiences creates a perception of risk determining their adherences levels.
Implications of key findings
For clinicians, it is important to be aware of the balance between these components. An accessible and non-judgmental discussed with patients about this topic is recommended. Furthermore, peer contact can be advised.
Keywords: Adolescence, chronic disease, haemophilia, patient compliance, prophylaxis, qualitative study