INTERNET MEDICAL SUPPORT SYSTEM FOR HOME CARE OF PATIENTS WITH AMYOTROPHIC LATERAL SCLEROSIS

• Published in: Japanese Journal of National Medical Services Vol. 58; no. 10; pp. 589 - 594
• Main Authors: FUKUDOME, Takayasu, MATSUO, Hidenori, MATSUDA, Yoshiko, OHIRA, Shihomi, SHIMONO, Osamu, SHIBUYA, Noritoshi
• Format: Journal Article
• Language: Japanese
• Published: Japanese Society of National Medical Services 20.10.2004
• Subjects: amyotrophic lateral sclerosis; Internet; medical support system for home care
• ISSN: 0021-1699; 1884-8729
• DOI: 10.11261/iryo1946.58.589

From December 2002 to March 2004, an Internet medical support system for home care was provided to two patients with amyotrophic lateral sclerosis (ALS) to evaluate its effectiveness. A secured Internet home page in which the health status was entered and reviewed by the patient and medical staff was created. Each patient entered their health status on the page alone, and thereafter, medical staff entered their comments concerning the patient's health on the same page. Thus, medical staff could review the patients' condition without any access restrictions. Based on the results of a questionnaire about the Internet system, patients and their family were comfortable and satisfied using the system. A Japanese version of the ALSAQ40 questionnaire was used to measure patients' quality of life before, at 3, 6, 12, and 24 months. The total scores of ALSAQ40 increased as the patient' s condition deteriorated. The domain of Emotional Function was preserved compared with other domains. These initial results demonstrate the beneficial effects of the system. Further study with a larger group of patients is needed to validate the results and the security of the system to protect patients' privacy.