|Finding your way with Hemophilia|
Tuesday, February 03, 2015 11:30 am
For young adults with hemophilia, making the transition from parent guided care with supervised prophylaxis treatment to independence is a crucially important time in the management of their disease. Without thorough planning and follow up, this transition period can lead to prophylaxis non-adherence, increased bleeding risk and joint damage progression.
In order to make a successful transition to independence, it is necessary for young adult hemophiliacs to have a good understanding of :
• their hemophilia and its uniqueness
• their hemophilia treatment plan
• the natural clinical consequence of their disease
• the value of a relationship with a HTC (Hemophilia Treatment Center)
HTCs are specialized healthcare centers staffed by multidisciplinary support personal that provide comprehensive education and care to patients with hemophilia. Hemophilia patients benefit from a wide variety of clinicians. In addition to hematologists, patients may require the experienced services of orthopedists, physical therapists, nurses, mental health professionals, dentists, nutritionists and infectious disease specialists. HTCs can provide access or referral to these services and more.
A continued relationship with a HTC is encouraged to help patients successfully manage their hemophilia and realize improvements in health outcomes. With an emphasis on education and the benefits of prophylaxis hemophilia patients are more likely to remain adherent to their treatment, thus minimizing the number of breakthrough bleeding episodes and consequential joint damage.
Hemophilia is a complex disease. Helping young adults with hemophilia successfully transition to independent adult care gives them the confidence and resources to fully understand and master their hemophilia. Hemophilia well managed results in less disability and less serious complications and this is the goal of successful transitions to independence for young adults with hemophilia.