Improvement of the understanding of blood donors with human T-cell leukaemia virus type 1 using a new information booklet

Background Human T-cell leukaemia virus type 1 (HTLV-1) tests have been mandated in Japan since 1986, and notification of HTLV-1-seropositive donors started in 1999. However, donor knowledge and response to notification has not been assessed. Study design and Methods A questionnaire survey was conducted among blood donors notified of HTLV-1 seropositivity regarding their knowledge of HTLV-1 and unmet information needs. To reduce anxiety among notified individuals and raise awareness of their infection status, we created a booklet containing information that would be useful for these individuals without causing unnecessary anxiety while also requesting that they refrain from donating blood in the future. Results A questionnaire survey conducted before the distribution of a new booklet revealed that 15.0% of respondents donated blood again despite receiving an HTLV-1-seropositive notification at the previous donation. While 62.2% of respondents reacted to the notification favourably, 40.2% expressed anxiety and 32.5% requested information on related diseases and medical institutions for consultation. In the secondary survey after distribution of the new booklet, 87.9% of respondents reported that the information was comprehensible, and an increase in consultations of medical institutions by notification recipients was observed. Furthermore, no re-visiting donors were observed among the HTLV-1-seropositive recipients who were notified using the new information booklet. Conclusion The new information booklet provided enlightenment on HTLV-1 infection and facilitated the consultation of medical institutions by seropositive donors, leading to an improvement in the health-related quality of life of seropositive blood donors and the safety of blood products.