| Budget Amount *help |
¥4,940,000 (Direct Cost: ¥3,800,000、Indirect Cost: ¥1,140,000)
Fiscal Year 2015: ¥1,690,000 (Direct Cost: ¥1,300,000、Indirect Cost: ¥390,000)
Fiscal Year 2014: ¥1,690,000 (Direct Cost: ¥1,300,000、Indirect Cost: ¥390,000)
Fiscal Year 2013: ¥1,560,000 (Direct Cost: ¥1,200,000、Indirect Cost: ¥360,000)
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| Outline of Final Research Achievements |
The purpose of this research is to explicate how patients in Japan with autosomal dominant polycystic kidney disease (ADPKD) experience their illness by analyzing data obtained from interviews. Since the gene responsible for ADPKD was identified in the mid-1990s, patient and their family experiences with the illness have been changing．Patients diagnosed with ADPKD became able to understand the life of a parent with the same disease from a new perspective. Greater understanding of the genetic disorder encouraged patients to pass down knowledge to younger generations and to participate in clinical trials. Patient groups in Japan have played an important role in disseminating information about clinical trials. The recent approval of a new drug was a direct result of activities of patient groups, and created new possibilities. We explicated the shift in perception of this disease among patients and their families and its effect on their lives.
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