Haemophilia care in adolescents - Compliance and lifestyle issues

Abstract

Adolescence is characterized by simultaneous physical, psychological, social and sexual changes that compound the challenges faced by parents, health care providers and adolescent haemophilia patients themselves. Compliance with prophylactic factor replacement therapy frequently declines when patients pass from childhood to adolescence. Familiarity with long-term joint damage is lacking among the current generation of children who have grown up with prophylactic treatment and the tendency of teenagers to focus primarily on short-term goals increases the likelihood that regular prophylactic replacement therapy receives low priority. Most adolescents continue prophylactic treatment prior to physical or social activities because short-term goals are more likely to be perceived as relevant. The most important factor that influences compliance is support from parents, peers and caregivers, who provide encouragement and support active participation in health care management. During adolescence, personalized treatment strategies that suit the patient and his lifestyle are essential to ensure optimal outcomes. Physical activity is important for all adolescents and can contribute to better coordination, endurance, flexibility and strength. Physical training also contributes to healthier joints and reduces the risk of bleeding episodes in teenagers with haemophilia; however, the selection of an appropriate sport that minimizes the risk of injury and matches the patient's skill and needs is important. Children with haemophilia may have disease-related functional deficits and often exhibit subclinical findings in the joints; therefore an orthopaedic examination, fitness check and motion analysis may assist in guiding preventive physiotherapy and the choice of sport. © 2009 The Authors Journal compilation © 2009 Blackwell Publishing Ltd.