Changes of Subjective QOL in Duchenne Muscular Dystrophy from 1992 to 2004

• Published in: Japanese Journal of National Medical Services Vol. 60; no. 12; pp. 743 - 749
• Main Authors: INOUE, Yumiko, KURU, Satoshi, SAKAI, Motoko, KONAGAYA, Masaaki, FUJITA, Ietsugu
• Format: Journal Article
• Language: Japanese
• Published: Japanese Society of National Medical Services 20.12.2006
• Subjects: Duchenne muscular dystrophy; IPPV; psychological state; QOL
• ISSN: 0021-1699; 1884-8729
• DOI: 10.11261/iryo1946.60.743

We investigated the changes of subjective QOL in Duchenne muscular dystrophy by comparing data for the years 1992 and 2004. The subjects were 41 hospitalized DMD patients in Suzuka National Hospital (age 19.1±4.3 years, M±SD) in 1992 and 32 patients (24.8±6.7) in 2004. The questionnaire consisted of 30 yes-or-no questions which were divided into six categories. The ratio of satisfaction in each category for each respective year was as follows: A) Self Perception-77.6% in 1992 and 76.9% in 2004; B) Medical Care-65.9% and 76.9%; C) Past, Present & Future-47.7% and 60.0%; D) Psychological State-43.9% and 63.8%; E) Family & Friends-70.2% and 78.8%; F) Vitality in Life-71.2% and 73.8%. There were significant increases of ratio of satisfaction from 1992 to 2004 in categories B (p<0.05), C (p<0.05) and D (p<0.01). The improvement of subjective QOL of DMD seems to be a result of progress in medical and the care environment in the recent era such as mechanical respirator, electric wheelchairs which can be easily handled by DMD patients, and IT technology.