Care, needs and perceptions of adolescents and young adults growing up with hemophilia A or B in Germany

D. Richter, C. Heller, M. Heuer, S. Schultze-Strasser, D. Schwabe, C. Königs (Frankfurt am Main, Germany)

Pediatric - Hemostasis
Date: 16.02.2017,
Time: 08:00 - 09:15

Objective: Adolescence and transition from pediatric to adult care represents a major challenge in the care for young people with hemophilia. The situation and the needs of young people with hemophilia in Germany are largely unknown. The present study evaluates the situation and perception of adolescents and young adults (AYAs) aged 15 years or more growing up with hemophilia A or B in Germany.

Methods: The study collects qualitative data based on individual open interviews and quantitative data on treatment and clinical issues from medical records to identify the medical, socioeconomic and health-related situation and unmet needs of AYAs. 30 patients will be enrolled into the trial.

Results: After about one third of the patients completed the study, current experience indicates long-term prophylaxis in most patients with severe hemophilia A or B since early childhood. All patients are very active but almost none is free of limitations due to joint pain. During the interviews most of the patients describe their overall situation as good. Nevertheless there are individual differences between patients with and without impairments due to their joint status or bleeding irregularities. The interviewed AYAs themselves see no problems in gaining independence and no or little restrictions or discrimination in their social environment due to their condition, but they are often worried about disadvantages in social security. Most of the interviewed patients ask for the development of easier therapies namely oral coagulation factors. This would improve adherence to therapy and thus would protect joint function.

Conclusion: The overall situation of AYAs with hemophilia in Germany appears to be satisfactory or good; nevertheless individuals are left behind. There is room for improvement and the urgent need for a structured support of young people with hemophilia and their transition into adult care.