Medical care for haemophilia

Background/objectives: haemophilia is a lifelong bleeding disorder associat ed with significant morbidity. Because of this for almost 25 years there ha s been a national network of specialized haemophilia treatment centres (HTC s). Despite this, there is little published information about HTC utilizati on. We chose to study utilization and satisfaction with care received from the Colorado HTC as compared with that received at other nonspecialized sit es. Research design: a survey was designed in collaboration between Colorado De partment of Public Health and Environment (CDPHE) and the Denver Mountain S tates Regional Hemophilia Center personnel for telephone administration by CDPHE personnel to all persons with haemophilia (pwh) residing in Colorado in 1994. Subjects: one hundred forty-five persons with haemophilia (77% of those eli gible) participated in the survey. Results: the majority of respondents received care from the HTC. Persons le ss than 21 years of age and those with severe disease were significantly mo re 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 insure r restricted access to the HTC and the lack of haemophilia knowledge of non -HTC providers. Conclusions: if HTCs and other specialty centres are to sun ive in an incre asingly managed care environment, in addition to increased patient satisfac tion, data documenting improved patient outcome with specialty centre direc ted care will be necessary to facilitate referral.