The Hemophiliac and Knowledge of Their Condition

Abstract

The Canadian Hemophilia Society (CHS) emphasizes education of the hemophilia and his family. A questionnaire was designed to answer the following. Was the level of knowledge a sample of Canadian hemophiliacs and their parents had of their condition related to the educational objectives of the CHS? Was the standard of treatment they received directly related to this level of knowledge, and in turn did it affect the degree of compliance to physician’s orders? 220 hemophiliacs and parents across Canada were interviewed and 203 (91%) responded. The following results were verified using suitable statistical analysis. Individuals who attended CHS meetings, received CHS literature and Handbook had superior knowledge of their condition compared to those hemophiliacs and parents not receiving these services. Although physicians knew more about hemophilia than the average parent or hemophiliac, if a parent had post secondary education, or if the hemophiliac was severely effected, their knowledge was equal to that of non actively treating physicians. Hemophiliacs had increased knowledge if they were enrolled in a home infusion program and had regular inhibitor and factor assays performed. Only 5 of 167 hemophiliacs and parents were non compilers, and had a lower level of knowledge compared to the compliant group. This suggests that the hemophiliac with superior knowledge is severely affected and enrolled in a home infusion program. He is cared for by a physician actively treating hemophilia, who arranges regular inhibitor and factor level assays. Furthermore he is a member of the CHS, possesses a CHS Handbook and attending regular CHS meetings.