Duchenne型進行性筋ジストロフィーの「エンド・オブ・ライフ」 ケアに関する研究 : 国内外の研究動向

摘要

In the present study, we examined the concept of end-life care for Duchenne muscular dystrophy and trends in related research with the objective of systematizing such care. We obtained the following findings: 1) A search on the PubMed database of literature published before December 31, 2007 containing the term "end-of-life" in the title or abstract yielded 2087 results, and this literature tended to become more common in recent years. However, when the search was narrowed down to include the term "muscular dystrophy", only one study (Hilton et al, 1993) was found. 2) A study on the components of end-of-life care led to the following. multidisciplinary support, the perspective of patients, and relatively long-term support for end-stage patients. 3) Although research had been conducted on support during the terminal stage for Duchenne muscular dystrophy both in Japan and abroad, no studies were based on the concept of end-of-life care.