Health related quality of life and disease severity in patients with alpha-1 antitrypsin deficiency.

Knebel AR; Leidy NK; Sherman S

首页> 外文期刊>Quality of life research: An international journal of quality of life aspects of treatment, care and rehabilitation >Health related quality of life and disease severity in patients with alpha-1 antitrypsin deficiency.

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Health related quality of life and disease severity in patients with alpha-1 antitrypsin deficiency.

机译：Health related quality of life and disease severity in patients with alpha-1 antitrypsin deficiency.

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STUDY QUESTION: To describe health-related quality of life (HRQL) in individuals with alpha-1 antitrypsin (AAT) deficiency, examine the cross-sectional relationship between disease severity and HRQL, and explore changes in lung function and HRQL over time in a subset of these individuals. MATERIAL/METHODS: Forty-five adults with AAT deficiency and moderate to severe emphysema completed the Chronic Respiratory Disease Questionnaire (CRQ), six-minute walk distance (6-MWD) and pulmonary function tests (PFTs). Twenty of the 45 were followed for two additional years with repeated measurements of CRQ and PFTs. RESULTS: The mean +/- SD age was 49 +/- 8 years. Initial CRQ subscale scores were: dyspnea 17.5 +/- 4.3; fatigue 17.0 +/- 5.46; emotional function 33.1 +/- 8.67; and mastery 21.7 +/- 4.65. No relationship was found between percent predicted forced expiratory volume in one second (FEV1%) and CRQ score; 6 MWD and fatigue correlated significantly (r = 0.32, p < 0.05). Repeated PFT and CRQ measurements in 20 subjects showed statistically significant declines in FEV1 and slow vital capacity (SVC), but no change in CRQ scores. CONCLUSIONS: Results suggest persons with AAT deficiency face challenges to HRQL that are similar to older adults with chronic pulmonary disease. Further research is needed on the nature of the relationship between disease severity and HRQL in this population.

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《Quality of life research: An international journal of quality of life aspects of treatment, care and rehabilitation》 |1999年第4期|385-391|共7页
作者
Knebel AR; Leidy NK; Sherman S;
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作者单位

National Institutes of Health, Clinical Center Nursing Department, Bethesda MD 20892-1506, USA. aknebel@nih.gov;

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正文语种英语
中图分类预防医学、卫生学;
关键词
alpha 1-Antitrypsin Deficiency; Health Status; Quality of Life; α1-抗胰蛋白酶缺乏症; 卫生状况; 生活质量;

Health related quality of life and disease severity in patients with alpha-1 antitrypsin deficiency.

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