Blood donor notification of variant Creutzfeldt–Jakob disease risk: Lessons in communicating donor deferral and risk

AbstractBackground

In 2005, the blood service in England notified 101 donors by letter that they may be at risk of variant Creutzfeldt–Jakob disease (vCJD) because a recipient of their blood later developed vCJD. Donor experience of the notification was studied in a 2009 survey.

Methods

Fifteen questions focused on satisfaction, emotional response and understanding of the notification letter. An average Likert score was calculated: 1 and 2 =?dissatisfied, 3 =?equivocal and 4 and 5 =?satisfied; the per cent satisfied and dissatisfied were calculated and characteristics compared using the Fisher and Chi-squared tests.

Results

The questionnaire was completed by 56 of 90 notified donors, mostly repeat, U.K.-born donors over 45?years of age. Four years after notification, many individuals still felt surprise (44%), upset (44%) or worry (50%) about the letter, with 10 feeling depressed. Thirty per cent were uncertain if they had vCJD or not. For future notifications, 57% would still favour a detailed letter and 36% would prefer a discussion in person.

Discussion

It was notable how many individuals, 4?years later, still felt continuing anxiety about the vCJD notification letter, not noted in earlier interviews. This highlights a need for on-going support required in donor notifications where outcome for the individual is highly uncertain.