Haemophilia care in adolescents - compliance and lifestyle issues
Haemophilia care in adolescents - compliance and lifestyle issues
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DOI：
10.1111/j.1365-2516.2008.01948.x
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发表时间：
2009-01-01
期刊：
影响因子：
3.9
通讯作者：
Seuser, A.
中科院分区：
文献类型：
--
作者：
Petrini, P.;Seuser, A.
青春期的特点是同时发生生理、心理、社会和性方面的变化，这些变化加剧了父母、卫生保健提供者和青少年血友病患者本身所面临的挑战。当患者从儿童期进入青春期时，预防性因子替代治疗的依从性经常下降。在预防性治疗中长大的当代儿童缺乏对长期关节损伤的熟悉，青少年主要关注短期目标的倾向增加了定期预防性替代治疗获得低优先级的可能性。大多数青少年在身体或社会活动之前继续预防性治疗，因为短期目标更有可能被认为是相关的。影响依从性的最重要因素是来自父母、同伴和照顾者的支持，他们提供鼓励和支持积极参与医疗保健管理。在青春期，适合患者及其生活方式的个性化治疗策略对于确保最佳结果至关重要。体育活动对所有青少年都很重要，有助于提高协调性、耐力、柔韧性和力量。体育锻炼也有助于健康的关节，并降低血友病青少年出血发作的风险;然而，选择适当的运动，最大限度地减少受伤的风险，并匹配患者的技能和需求是很重要的。血友病儿童可能有疾病相关的功能缺陷，并经常在关节中表现出亚临床表现;因此，骨科检查，健身检查和运动分析可能有助于指导预防性物理治疗和运动的选择。
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 call 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.