Survey on the current status of patients with Parkinson's disease: their lives with in-home care and the services

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OBJECTIVE: The objective was to conduct a survey to examine what support is necessary for patients with Parkinson's Disease (PD) given in-home care in Japan and to determine the current status of care service utilization. In 2004, a questionnaire survey was conducted on the Tokyo chapter members of the Japan PD METHODS: Association and the results were compared with those from the 1995 survey performed on subjects from the same association. In the 1995 survey, half of the association members of the chapter were selected via random systematic sampling. In the 2004 survey, the questionnaire was mailed with a newsletter to all the association members of the chapter. The individuals returned their questionnaires by postal mail. The collection rates were 52.9% in 1995 and 21.3% in 2004. In both surveys, the mean age of RESULTS: the participants was 69.0 years old. The respondents in the 2004 survey had a higher severity of disease and a larger percentage answered that they had predominant symptoms and difficulties with daily life. Regarding participation in various activities, opportunities to work had decreased, but the possibility of meeting people other than at work and to engage in hobbies and relax had increased. Regarding sources of information, decrease was noted for public health nurses and increase for magazines. There was an increase in the number of people who were told that their problem was psychological at their initial diagnosis. 58.2% of the respondents in the 2004 survey received approval for long-term care insurance, and 37.3% of these reported that they their symptoms were more severe than the level for which they were approved. 7.5% of the respondents answered that their condition had worsened after admission to a nursing facility. CONCLUSION: The results of this 2004 survey have limitations and might not be characteristic of all PD patients. However, the respondents answered that their severity of disease was high and their difficulties increased, despite increase in opportunities to enjoy hobbies and to relax. Clearly, some patients feel that their condition is more severe than the level recognized by the primary nursing care authorities, with some considering that their conditions worsened after receipt of services. Understanding the characteristics of PD, provision of services appropriate to patients' symptoms, and ways of incorporating rehabilitation in patients' daily lives appear to be increasingly necessary. Information support is necessary to understand how best to provide psychological support for PD patients.

Original languageEnglish
Pages (from-to)338-347
Number of pages10
Journal[Nippon kōshū eisei zasshi] Japanese journal of public health
Issue number5
Publication statusPublished - 2007 May

ASJC Scopus subject areas

  • General Medicine


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