難病患者のQuality of Lifeの向上についての一考察—パーキンソン病患者の主観的満足感を通して

Quality of Life for Patients with Intractable Diseases: Subjective Satisfaction of Patients with Parkinson's Disease

緒言

　難病とは，1972年難病対策要綱において，「①原因不明，治療法未確立であり，かつ，後遺症を残すおそれが少なくない疾患，②経過が慢性にわたり，単に経済的な問題のみならず介護等に著しく人手を要するために家族の負担が重く，また精神的にも負担の大きい疾患^1）」と定義された。「難病」は，医療に従事する側よりもむしろ患者友の会などが医療福祉を願い，病因の究明や医療費の公費負担などを訴えて国や地方公共団体などに呼びかける場合に用いられていたが，それが一般的名称となった^2）。難病は，慢性のしかも患者および家族の生活に重大な長期間の困難をもたらす疾患であるから，患者の「生き方」そのものや，そこで体験される幸不幸などを含む身体疾患であって，「心とくらし」が問われる疾患である。

　Gue^3）は，「慢性疾患患者に対するQOL研究が1983年からの10年間に増加しており，慢性疾患患者は，長期の治療が必要なためQOLは重要である」と報告した。現在，わが国も，難病患者に対するQOLの維持向上の支援が重要課題となっている。

　More than 20 years have passed since policies for dealing with intractable diseases have been instituted in Japan. This study was carried out to clarify which factors tend to promote a patient's subjective satisfaction with his or her quality of life.

　The subjects were 62 male and 51 female patients with Parkinson's disease. Their average age was 68.8 years.

　The results were as follows:

　1. Patients placed more importance on trying to understand the pathophysiology of the disease than trying to improve their better-life with the disease.

　2. Most male patients received care from a family member, whereas most female patients received care from a non-family member.

　3. Multiple logistic regression analysis indicated that a) patients who understand how to improve their better-life with Parkinson's Disease are four times more satisfied (on-a subjective basis) than patients who do not understand how to improve their better-life, and b) patients who have a supportive caregiver are twice as satisfied as those who do not.

　These findings suggest that, in order to increase the subjective satisfaction of Parkinson's disease patients, it is important for them to have a supportive caregiver and to help them understand how to improve their better-life.