[Hansen's disease-associated disabilities in sanatoria residents. A study of the actual situation in three sanatoria located in the Setouchi area].

PURPOSE: Clarification of details of Hansen's disease in Japan is important for obtaining an adequate understanding of the present circumstances regarding control and for formulation of specific suggestions for future measures. The average age of residents in national Hansen's disease sanatoria reached 74.9 in May 2002 and most of these suffer from serious disabilities caused by the disease. In order to implement measures facilitating their return to society or secure living in sanatoria, a proper understanding of the residents' physical situation is essential. Therefore, the present study was conducted of residents suffering from Hansen's disease in Japan.

METHOD: A direct interview was conducted with all 1282 residents of three sanatoria, located in the Setouchi area: Nagashima-aiseien, Oku-komyoen, and Oshima-seishoen. An investigator visited the rooms of the residents, interviewed them using a questionnaire, which consisted of about 100 items including the OPCS scale, and filled out an answer form. The reply rate was 64%.

RESULTS: The average age of the residents was found to be 72.8 years, their average age when they entered the sanatoria was 26.0 years, and the average period of residence was 52.4 years. The damage they suffer as a result of the isolation policy is physical, mental, economical and social. That is to say, their entire life is harmed as a direct result of the Leprosy Prevention Law or the Eugenic Protection Law with discrimination in society and negative effects on their families. Their physical condition features serious disabilities in the use of fingers, as well as in walking and seeing caused by peripheral nerve damage. Such disabilities are related to their age and period of residence, and in addition, these in use of their fingers are related to the work which residents were forced to do in sanatoria. The results indicate that patients' physical condition is related to their age, how long they have had the disease and their work in sanatoria.

CONCLUSION: It is clear that previous Hansen's disease control in Japan has caused a great deal of harm, from which it is very difficult to recover so that residents have to live with serious problems. In order to implement measures allowing their return to society or more secure life at sanatoria, sufficient care is needed to treat progressive disabilities caused by ageing and prevent deterioration caused by peripheral nerve damage.