The Transformation of Individual Quality of Life in Person with Muscular Dystrophy

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  • Fukuda Mari
    日本学術振興会特別研究員 DC（岡山大学）／国立病院機構新潟病院臨床研究部
  • Sato Tatsuya
    立命館大学文学部

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Other Title
  • 神経筋難病患者の Individual QOL の変容
  • 神経筋難病患者のIndividual QOLの変容 : 項目自己生成型QOL評価法であるSEIQOL-DWを用いて
  • シンケイキン ナンビョウ カンジャ ノ Individual QOL ノ ヘンヨウ : コウモク ジコ セイセイガタ QOL ヒョウカホウ デ アル SEIQOL-DW オ モチイテ
  • By Using the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQOL-DW)
  • 項目自己生成型 QOL 評価法である SEIQOL-DW を用いて

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Abstract

Health-related QOL (HRQOL) has been the focus of a particularly bodily function of research. However, many instruments used to measure HRQOL focus narrowly on physical functioning and well-being related to the disease itself. When these instruments have been used in relation to Nambyo (intractable diseases), and in the service of palliative care, this problem has been exacerbated. Thus, the purpose of this study was to longitudinally measure the individual QOL of person with muscular dystrophy using The Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQOL-DW), by asking participant to assess his condition once per year for a 3-year period. This instrument facilitates discussion of both QOL per se as well as issues related to daily life. Additionally, each factor identified as a contributor to QOL was analyzed in terms of the symptoms and life events experienced by participants. This study elucidated the process underlying the construction and reconstruction of narratives about QOL and, thereby, provides a method for clearly understanding the lives of individuals with progressive and refractory symptoms.

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