Investigation of consultation records of intractable diseases support centers

Abstract

We surveyed consultation records of the Intractable Disease Support Centers across Japan to examine the contents of the consultation sessions and the support measures given. Of the 5,145 consultation sessions that were classified according to diseases, 3,314 sessions were for disease designated as intractable diseases (64.4%) by the Ministry of Health, Labour and Welfare；i.e., neuromuscular diseases, 1,365 sessions (26.5%)；immune system disease, 491 (9.5%)；and digestive system disease, 417 (8.1%). The consultation issues broadly covered the areas of not only healthcare (28.9%) and nursing care (23.9%) but also the welfare system (12.9%) and employment (14.7%).

A total of 5,914 support measures were given. The breakdown of measures given by counselors was as follows：2,898 measures (49.0%) for giving explanations of systems or advice according to diseases, 1,141 (19.3%) for“active listening”, and 1,023 (17.3%) for“introducing other counseling services”. Our investigation revealed that the consultations involved diverse issues on a wide range of diseases, a situation that was difficult to be dealt with by using only the knowledge and experience of individual counselors. It was considered preferable to further take measures to improve the quality of counselors and to modify the framework to support them.