Treatment strategies for adolescents with hemophilia: opportunities to enhance development.

Abstract

For adolescents, negotiating developmental tasks while living with hemophilia can be difficult. Affected adolescents must somehow negotiate tasks inherent within normal adolescent development, along with the added complications of hemophilia. Complications may include changes in physical appearance due to a history of bleeding episodes and the need for adolescents to think about the consequences of neglected treatment before they are developmentally ready. However, current strategies employed in the treatment of hemophilia have provided adolescents, their families, and their caregivers with opportunities to minimize the impact of hemophilia on adolescent development. Self-infusion minimizes the social impact by allowing adolescents to quietly leave the classroom, treat themselves, and return to class without notice. Prophylactic care maintains a factor level that allows adolescents to participate in many more activities. A multidisciplinary treatment center model for care promotes focused care, education, and anticipatory guidance to minimize the impact and help families adjust to chronic illness. Strong state and national leadership provides research advocacy and funding support for adolescent programming.