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 Creutzfeldt-Jakob disease (CJD) through those blood products. The authors undertook a survey to determine the views of patients and parents of patients about being notified that they or their child had received such blood products.
METHODS: The study population consisted of 528 transfusion recipients, of whom 453 (85.8%) were under 16 years of age, notified by the Hospital for Sick Children, Toronto, of the CJD recalls in 1995 and 1996. Families attending an information session were asked to complete a self-administered questionnaire (85 cases). Ninety-seven families randomly selected from those who did not attend the session were interviewed by telephone. The questionnaire was adapted from a questionnaire used to evaluate families' responses to notification of transfusion and risk of HIV infection.
RESULTS: More than 80% of the respondents said they wanted to be notified and would want to be notified if there were another recall. On initial receipt of the notification about two-thirds of the respondents had been anxious, fearful or angry. There was no one method of conveying the information that suited all, but a personalized letter was seen as the most acceptable method.
INTERPRETATION: Most parents of children who have received blood products are in favour of being informed about the risk of CJD, despite the uncertainty of the information on risk and the anxiety that such information causes.