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.