Nuss R, Hedegaard H, Riske B, Hoffman R, Michael S, Manco-Johnson M
University of Colorado Health Sciences, Denver, USA.
Haemophilia. 1998 Nov;4(6):806-11. doi: 10.1046/j.1365-2516.1998.00196.x.
BACKGROUND/OBJECTIVES: Haemophilia is a lifelong bleeding disorder associated with significant morbidity. Because of this for almost 25 years there has been a national network of specialized haemophilia treatment centres (HTCs). Despite this, there is little published information about HTC utilization. We chose to study utilization and satisfaction with care received from the Colorado HTC as compared with that received at other nonspecialized sites.
A survey was designed in collaboration between Colorado Department of Public Health and Environment (CDPHE) and the Denver Mountain States Regional Hemophilia Center personnel for telephone administration by CDPHE personnel to all persons with haemophilia (pwh) residing in Colorado in 1994.
One hundred forty-five persons with haemophilia (77% of those eligible) participated in the survey.
The majority of respondents received care from the HTC. Persons less than 21 years of age and those with severe disease were significantly more likely to do so. Satisfaction with care received at the HTC was greater than that received at other sites (P < 0.01). Issues of concern were insurer restricted access to the HTC and the lack of haemophilia knowledge of non-HTC providers.
If HTCs and other specialty centres are to survive in an increasingly managed care environment, in addition to increased patient satisfaction, data documenting improved patient outcome with specialty centre directed care will be necessary to facilitate referral.
背景/目的：血友病是一种终身性出血性疾病，会引发严重的发病率。因此，在近25年的时间里，一直存在一个全国性的专业血友病治疗中心（HTC）网络。尽管如此，关于HTC利用情况的公开信息却很少。我们选择研究与在其他非专业机构接受的治疗相比，科罗拉多州HTC的利用情况和对所接受治疗的满意度。
科罗拉多州公共卫生与环境部（CDPHE）与丹佛山区州立地区血友病中心人员合作设计了一项调查，由CDPHE人员通过电话对1994年居住在科罗拉多州的所有血友病患者（pwh）进行调查。
145名血友病患者（占符合条件者的77%）参与了调查。
大多数受访者接受了HTC的治疗。年龄小于21岁的患者和患有严重疾病的患者接受HTC治疗的可能性显著更高。对HTC所提供治疗的满意度高于在其他机构接受的治疗（P < 0.01）。令人担忧的问题包括保险公司限制进入HTC以及非HTC提供者缺乏血友病知识。
如果HTC和其他专科中心要在日益严格的管理式医疗环境中生存，除了提高患者满意度外，还需要有数据证明专科中心指导的治疗能改善患者预后，以便于转诊。
