Berntorp E, Lethagen S, Ljung R, Johnsson H, Petrini P, Schulman S, Tengborn L, Rehnby B, Sarman E, Asberg B
Sektionen hematologi/koagulation, Universitetssjukhuset MAS, Malmö.
Lakartidningen. 1999 Apr 14;96(15):1849-52.
Haemophilia is a rare and potentially life-threatening disease. In Sweden, with a population of approximately 8.5 million, about 350 people suffer from the more severe forms of haemophilia or von Willebrand disease. Meticulous management is important if the patients are to be spared chronic disability and serious treatment complications. The disease is lifelong and affects psychosocial aspects of life among patients and their families. With the help of a grant from the Swedish Board of Halth and Welfare, a care programme has been designed to guarantee Swedish haemophiliacs comparable and optimal care. The programme has been drawn up by representatives of the three haemophilia centres in Sweden (at University Hospital, Malmö, Sahlgrenska University Hospital, Gothenburg, and Karolinska Hospital, Stockholm) in co-operation with the World Federation of National Haemophilia Organisations. To ensure optimal individual application of the programme, individualised management strategies and patient information leaflets have been prepared.
血友病是一种罕见且可能危及生命的疾病。在瑞典，人口约850万，约有350人患有较为严重的血友病或血管性血友病。若要使患者避免慢性残疾和严重的治疗并发症，细致的管理至关重要。该疾病是终身性的，会影响患者及其家庭生活的心理社会层面。在瑞典卫生和福利委员会的资助下，已设计出一项护理计划，以确保瑞典血友病患者能获得同等且优质的护理。该计划由瑞典三个血友病中心（马尔默大学医院、哥德堡萨尔格伦斯卡大学医院和斯德哥尔摩卡罗琳斯卡医院）的代表与世界血友病组织联合会合作制定。为确保该计划能得到最佳的个体化应用，已制定了个体化管理策略和患者信息手册。
