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血友病患者满意度:医疗护理的基本组成部分,也是所提供医疗服务质量的指标。

Patient satisfaction in hemophilia: a fundamental component of medical care and an indicator of the quality of medical care provided.

机构信息

Department of Orthopedic Surgery, La Paz University Hospital, Madrid, Spain.

出版信息

Expert Rev Hematol. 2019 Nov;12(11):923-926. doi: 10.1080/17474086.2019.1677153. Epub 2019 Oct 17.

Abstract

: It is paramount that physicians treating people with hemophilia (PWH) assess their degree of satisfaction.: The most important predictors of the difficulties of treatment satisfaction are the perceived barriers, the level of skills related to self-treatment, the degree of severity of hemophilia and the affective status. The use of an electronic diary improves the adherence of PWH with respect to the registration of the mandatory information of their treatment. Asymptomatic HIV-positive PWH are more dissatisfied than HIV-negative PWH due to the effects of HIV and to the physical functional disabilities caused by the disease. Regarding total knee arthroplasty (TKA) in hemophilia, it has been shown that PWH with advanced painful knee arthropathy do not achieve the same degree of satisfaction as PWH with advanced painful osteoarthritis of the knee, this being due to residual symptoms and deterioration of other joints. TKA and total hip arthroplasty (THA) are reliable surgical procedures that give PWH a high degree of satisfaction. Regarding the use of a Bio-Set reconstitution method, most PWH (82%) preferred the Bio-Set method to previous reconstitution methods.: Further studies on the degree of satisfaction of PWH are essential.

摘要

: 治疗血友病患者 (PWH) 的医生评估其满意度至关重要。: 治疗满意度困难的最重要预测因素是感知障碍、与自我治疗相关的技能水平、血友病的严重程度和情感状态。使用电子日记可提高 PWH 对其治疗强制性信息的登记依从性。无症状 HIV 阳性 PWH 比 HIV 阴性 PWH 更不满意,这是由于 HIV 的影响以及疾病引起的身体功能障碍。对于血友病全膝关节置换术 (TKA),已经表明患有晚期疼痛性膝关节病的 PWH 不会像患有晚期疼痛性膝关节骨关节炎的 PWH 那样获得相同程度的满意度,这是由于残留症状和其他关节恶化所致。TKA 和全髋关节置换术 (THA) 是可靠的手术程序,可使 PWH 获得高度满意度。关于使用 Bio-Set 复溶方法,大多数 PWH(82%)更喜欢 Bio-Set 方法而不是以前的复溶方法。: 进一步研究 PWH 的满意度非常重要。

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