Relationships Between Disease Severity, Social Support and Health-Related Quality of Life in Patients with Amyotrophic Lateral Sclerosis

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• 作者：Benjamin Ilse (5)
  Tino Prell (1)
  Mario Walther (2)
  Viktor Hartung (1)
  Susanne Penzlin (1)
  Florian Tietz (1)
  Otto-Wilhelm Witte (1) (4)
  Bernhard Strauss (3)
  Julian Grosskreutz (1)
  
  5. Department of Palliative Medicine ; University Medical Centre ; G枚ttingen ; Germany
  1. Hans-Berger Department of Neurology ; Jena University Hospital ; Erlanger Allee 101 ; 07740 ; Jena ; Germany
  2. Institute of Medical Statistics ; Computer Sciences and Documentation ; Jena University Hospital ; Jena ; Germany
  4. Center for Sepsis Control and Care (CSCC) ; Jena University Hospital ; Jena ; Germany
  3. Institute for Psychosocial Medicine and Psychotherapy ; Jena University Hospital ; Jena ; Germany
  
• 关键词：Quality of life ; Health ; related quality of life ; Social support ; ALSFRS ; R ; Motor neuron disease
• 刊名：Social Indicators Research
• 出版年：2015
• 出版时间：February 2015
• 年：2015
• 卷：120
• 期：3
• 页码：871-882
• 全文大小：451 KB
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• 刊物类别：Humanities, Social Sciences and Law
• 刊物主题：Social Sciences
  Sociology
  Quality of Life Research
  Microeconomics
  Public Health
  Human Geography
  
• 出版者：Springer Netherlands
• ISSN：1573-0921

文摘

Quality of life (QOL) is an important issue in patients with amyotrophic lateral sclerosis (ALS). QOL measurements can help the support care team understand how to maintain or improve QOL in ALS patients. The purpose of this study was to describe the relationship between health-related QOL, disease severity and social support in ALS patients. In the current study, 49 German ALS patients were evaluated using the European quality of life score (EQ-5D), ALS Functional Rating Scale in its revised form (ALSFRS-R), Social Support Questionnaire (F-SozU K-14) and the Beck depression inventory. Data concerning patient history and socioeconomic background were collected using a semi-structured interview. Age, gender, number of children, habitation, socioeconomic status and disease duration were not significantly related to health-related QOL (EQ-5D). Positive correlations were found between the ALSFRS-R, social support and health-related QOL, whereas depression was negatively correlated with the ALSFRS-R score. A multiple linear regression model indicated a significant influence of the ALSFRS-R score on health-related QOL in ALS patients, with an additional trend for social support as a predictor. These results suggest that because of the logarithmic association between measures, compensatory therapy for loss of health-related QOL should be optimised during the course of the disease in ALS patients.