DELIVERY OF HEALTH CARE IN HEMOPHILIA

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Abstract
Data on 56 severe and 16 moderate hemophiliacs who were intensively trained in self-therapy and have completed one to five years on this program reveal several principles not emphasized by prior reports. (1) The immediate application of therapy for suspected hemarthrosis, before the appearance of physical signs, leads not only to a striking decrease in morbidity but to a slight decrease in the quantity of plasma products required. (2) Dollar costs of this method of health care delivery are considerably lower than other effective methods and now average $3500 per patient per year, in our hands. (3) Intensive education and training of patients and family members makes lay persons extremely valuable members of the health care team and produces occasional dramatic health benefits. (4) Progression of long-term problems such as hemarthrosis, formerly found in 90% of our group, still exists for 19%. (5) The failure rate is highest in the older hemophiliacs. (6) Periods of several months of prophylactic therapy have a limited but valuable role in selected cases. (7) Mechanisms for mandatory periodic comprehensive health evaluation mjst be a part of every home infusion program, in order that the inevitable failures can be detected and appropriate corrective measures instituted.

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