LAUSR

Abstract Background The difficulty in obtaining the latest information on diseases is a challenge of rare cancer care. Rare Cancer Center began to hold seminar sessions entitled: "Meet the Expert on Rare Cancer (MtE)" through collaboration with CancerNet Japan and Oncolo since 2017. During these sessions, doctors with expertise as lecturers explain each type of rare cancer, with the latest information. Each session is video-recorded and shared through video-streaming on a website. A total of 35 MtE sessions were held with cooperation from more than 20 patient support groups. Methods A questionnaire survey was conducted to examine the details of the 35 MtE sessions held within the 2-year period between 2017 and 2018. The study items included: the contents of lectures, number and types of participants, sex ratio, and satisfaction with the seminar. Results The total number of participants during the study period was 1,230. The mean number of participants was 35/session (range: 17 to 53). Participants were mainly patients (41%) and their families (35%). The most frequent reason for participating in the seminar was "to learn about the newest treatment method (66%)", followed by "to obtain accurate information (65%)", and then "to collect information regarding rare cancers, which is not sufficiently available (65%)" Among all participants, 92% were satisfied with the seminar. The total number of views of the videos (31 sessions) already published online was 54,107 as of December 2018. Conclusion The results confirmed that the seminar providing information on rare cancers is markedly needed. As the number of video-streaming views was nearly 50 times larger than that of participants, there may also be a marked potential need for such seminars. As a future perspective, measures to effectively transmit more beneficial and useful information regarding rare cancers will be examined by analyzing responses to this questionnaire and video-streaming view frequencies.