Abstract
Health-related QOL (HRQOL) has been the focus of a particularly bodily function of research. However, many
instruments used to measure HRQOL focus narrowly on physical functioning and well-being related to the disease
itself. When these instruments have been used in relation to Nambyo (intractable diseases), and in the service of
palliative care, this problem has been exacerbated. Thus, the purpose of this study was to longitudinally measure the
individual QOL of person with muscular dystrophy using The Schedule for the Evaluation of Individual Quality of
Life-Direct Weighting (SEIQOL-DW), by asking participant to assess his condition once per year for a 3-year period.
This instrument facilitates discussion of both QOL per se as well as issues related to daily life. Additionally, each
factor identified as a contributor to QOL was analyzed in terms of the symptoms and life events experienced by
participants. This study elucidated the process underlying the construction and reconstruction of narratives about
QOL and, thereby, provides a method for clearly understanding the lives of individuals with progressive and refractory
symptoms.
