| Quality of Life in Patients with Neuromuscular Disease Using Mechanical Ventilatory Support. |
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Park, Jung Hyun , Kang, Seong Woong , Kim, Eun Joo , Ha, Young Ran |
1Department of Rehabilitation Medicine and Rehabilitation Institute of Muscular Disease, Yonsei University College of Medicine, Korea. kswoong@yumc.yonsei.ac.kr
2Department of Rehabilitation Psychology, Yongdong Severance Hospital, Korea. |
| 인공호흡기를 사용하는 신경근육계 환자들의 삶의 질 평가 |
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박중현, 강성웅, 김은주, 하영란1 |
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연세대학교 의과대학 재활의학교실 및 근육병재활연구소, 1영동세브란스병원 재활심리실 |
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| Abstract |
Objective
To estimate the quality of lives in neuromuscular disease patients using mechanical ventilators by comparing their 'Index of Well-being' reported their own and caregivers.
Method
The Semantic Differential Scale of General Affect and Life Domain Satisfaction Measures were instruments to measure perceived well-being. They were used to survey 33 ventilator-assisted patients and their caregivers. A third instrument was devised to study the satisfaction of rehabilitative management including mechanical ventilation.
Results
The caregivers significantly underestimated their patients' scores in the general affect instruments and lifesatisfaction (p＜0.05). Twenty-six of 33 responding patients (78.8%) expressed satisfaction with present rehabilitative management.
Conclusion
The most disabled ventilator-assisted patients with neuromuscular disease rated their quality of life as satisfying. The dependence on ventilation was not a predictor of a low quality of life. But the rating of the patient's quality of life from significant others was underestimated. This was important because patients' decision making concerning ventilation care was influenced by significant others. (J Korean Acad Rehab Med 2004; 28: 157-162) |
| Key Words:
Quality of life, Mechanical ventilation, Neuromuscular disease, Pulmonary rehabilitation |
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