NOTIFYING PATIENTS EXPOSED TO BLOOD PRODUCTS ASSOCIATED WITH CREUTZFELDT-JAKOB-DISEASE - THEORETICAL RISK FOR REAL PEOPLE

Background: In July 1995 the Canadian Red Cross Society recalled blood products because of the hypothetical risk of transmission of Creutzfe ldt-Jakob disease (CJD) through those blood products. The authors unde rtook a survey to determine the views of patients and parents of patie nts about being notified that they or their child had received such bl ood products. Methods: The study population consisted of 528 transfusi on recipients, of whom 453 (85.8%) were under 16 years of age, notifie d by the Hospital for Sick Children, Toronto, of the CJD recalls in 19 95 and 1996. Families attending an information session were asked to c omplete a self-administered questionnaire (85 cases). Ninety-seven fam ilies randomly selected from those who did not attend the session were interviewed by telephone. The questionnaire was adapted from a questi onnaire used to evaluate families' responses to notification of transf usion and risk of HIV infection. Results: More than 80% of the respond ents said they wanted to be notified and would want to be notified if there were another recall. On initial receipt of the notification abou t two-thirds of the respondents had been anxious, fearful or angry. Th ere was no one method of conveying the information that suited all, bu t a personalized letter was seen as the most acceptable method. Interp retation: Most parents of children who have received blood products ar e in favour of being informed about the risk of ED, despite the uncert ainty of the information on risk and the anxiety that such information causes.