Impact of being placed at risk of Creutzfeldt-Jakob disease: a qualitative study of blood donors to variant CJD cases and patients potentially surgically exposed to CJD.

Background: The study objective was to describe the emotional and behavioural responses to Creutzfeldt-Jakob disease (CJD) risk notification.

Methods: A qualitative study using 11 participants' interviews, which were analysed thematically with Framework Analysis.

Participants: Six participants purposively selected from people exposed to surgical instruments used previously on patients with or at risk of CJD (any type; n = 60), and 5 participants from a cohort of blood donors to patients who subsequently developed variant CJD (n = 110).

Results: Notification was initially a shocking event, but with no lasting emotional impact. Those notified were convinced they were at extremely low risk of CJD and coped by not thinking about the information. Disclosure outside the immediate family was limited by fears of stigma. All expressed concern about the possibility of onward transmission and agreed notification was appropriate. Individual adherence to public health precautions varied from those who did nothing, apart from not donating blood, to those who consistently followed all advice given. This variation was informed by an assumption that information was always shared among health professionals.

Conclusions: Factors contributing to minimising emotional distress following notification of CJD risk were evident. We found little evidence of sustained emotional distress. However, implementation of behaviours to minimise onward transmission, particularly in health care settings, was variable - this requires further investigation.