Permanent Measures and Health Check-up
The MHLW positioned measures for SMON patients as permanent measures, and has protected and compensated those patients more carefully than patients with other intractable diseases. Permanent measures include health checkups for SMON patients, which have been conducted as an official business of the Research Committee on SMON since 1988. SMON health checkups have been conducted every year by members of the Research Committee on SMON in each prefecture, with approximately 40% of the estimated 1,500 SMON patients currently participating. In addition to a group check-up, which is conducted by bringing patients to public health centers and provides a good opportunity for patients to talk with other patients, a home-visit health check-up was recently introduced for patients who find it difficult to participate in group health check-ups. The health check-up aims to understand medical and welfare conditions by analyzing the regional and national data of consenting patients for the development of symptomatic therapy and to prevent exacerbation of conditions, and also to understand each patient’s condition through a medical interview and examination, by providing advice regarding treatment and by answering patient’s questions. In the last year, 622 patients participated in a health check-up and gave consent to analyze data. The mean age of SMON patients is now over 80 years old, making an increase of concurrent diseases and welfare and caregiving issues critical subjects. To address those issues, various measures are being taken by persons in charge of conducting the health check-ups in each community; for example, professionals other than social workers and physicians are joining health check-ups, offering an opportunity to set up consultations following the health check-up. Moreover, the results of data analyses are used to create and distribute leaflets that benefit patient treatment and to organize lectures open to the public for enlightenment of healthcare and welfare professionals.
However, the following issues have been pointed out with regard to health check-up efforts: (1) how the health check-up results should be fed back into clinical practice and (2) a certain degree of bias is present because more than half of patients nationwide are not participating in check-ups while 90% of patients in the Hokkaido district participate. For the first issue, health check-up results are delivered to patients later; however, the system has not reached the stage of a network that includes the government, hospitals/clinics, welfare service offices, related businesses, and local communities that can share information?that is, the ideal of community healthcare/welfare professionals?because of personal information protection issues. For the second issue, efforts are being made, for instance, asking patients about their reasons to not participate in health check-ups leads to an improvement of health check-up approaches to increase participants, and conducting surveys to investigate current conditions and treatment among patients who do not participate in health check-ups. Unfortunately, some patients reject the proposal of home-visit health check-ups, so, it is difficult to expect a drastic increase of participation rates in health check-ups.
Even though the SMON Research Committee will conduct health check-ups for as many SMON patients as possible and investigate and clarify neurological/systemic conditions and the status of medical treatment/welfare service status in order to contribute to permanent measures for SMON patients, the patients’ medical and welfare conditions have deteriorated due to aging and an increase of concomitant diseases year by year.
- Research Committee on SMON
- Research representative:
Masaaki Konagaya, Director, NHO Suzuka National Hospital
3-2-1 Kasado, Suzuka-shi, Mie-ken, 513-8501
Phone: +81-59-378-1321
