Perceptions of Clinical Trials Among People with Illness

An Interview Survey of People with HTLV-1 Associated Diseases

Abstract

In recent years, patient and public involvement has been promoted in medical research and clinical trials, and active participation of people with illness is required in this process. In such a situation, there are unique implications for people with illness this group includes people with human T-cell leukemia virus type 1（HTLV-1）associated diseases who are discussed in this paper. The purpose of this study was to examine the implications of clinical trials for people with illness, based on analysis of narratives regarding “Chiken（治験：In Japanese, it means clinical trials for marketing approval of drugs or medical devices）” as one component of “the illness narratives” of people with HTLV-1 associated diseases.

The results revealed that “Chiken” had four implications for people with HTLV-1 associated diseases: a “means of healing and/or recovery,” “means of indicating one’s presence,” “means of expanding solidarity,” and “means of preserving heritage for the next generation.” In addition, it became clear that there were two types of conflicts regarding “Chiken” : a “conflict regarding the possibility of participation” and “conflict regarding solidarity.” It was also observed that such a narrative that associated “Chiken” with solidarity was dependent on the characteristics of the disease.

The findings of our study are important in contemporary society for understanding the perceptions of clinical trials among people with illness and for envisioning the ideal involvement of this group.