Notifying and supporting people who have acquired a risk for Creutzfeldt-Jakob disease (CJD) as a result of medical treatment

Page content: Overview | Background | Results & Recommendations

Overview

In 2006, the Cochrane Consumers and Communication Review Group (CC&CRG), part of the Cochrane Collaboration - a non-profit health research organisation – undertook a systematic review of the evidence on notification and support strategies for people at risk of medically-acquired Creutzfeldt-Jakob disease (CJD). The review was funded by the Public Health Division of the Victorian Department of Human Services (now Department of Health).

Background

CJD is a rare, fatal disease that can be transmitted through specific medical procedures. There is no screening test or treatment option for the disease and it can be passed between surgical patients despite instrument sterilisation.

To protect the public’s health, people must be informed when they may have been exposed to CJD risk because additional infection control measures may be needed for some medical procedures. With no way to test for CJD, however, potentially infected individuals can be told only that they have an increased risk of developing it.

The seriousness of the disease and the uncertainty of the risk can make notification a highly distressing event. It may also lead to problems in the future such as discrimination in accessing health care.

For these reasons, communication related to CJD must be carefully considered. The information must be conveyed in a way that causes the least harm to individuals and their families.

Results & Recommendations

From the research, a framework was developed to inform how communication might best be carried out when people are exposed to the risk of CJD via medical treatment. The major theme of the framework is the need for a standardised, planned approach to notification and support as outlined in the reports below.

Full report - Evidence on strategies for notifying and supporting consumers following exposure to the risk of CJD through medical treatment (1MB, pdf)

Summary – Synopsis; framework for notification, communication with and support of consumers at risk; recommendations (258kb, pdf)

Appendices 1 to 3 (857kb, pdf)

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