Quality-of-life scales for neurologic diseases

Cindy J Nowinski MD PhD (Dr. Nowinski of Northwestern University Feinberg School of Medicine has no relevant financial relationships to disclose.)
David Cella PhD (Dr. Cella of Northwestern University Feinberg School of Medicine has no relevant financial relationships to disclose.)
Anthony T Reder MD, editor. (Dr. Reder of the University of Chicago served on advisory boards and as a consultant for Bayer, Biogen Idec, Caremark Rx, Genentech, Genzyme, Novartis, Malinkrodt, Serono, and Teva-Marion.)
Originally released May 5, 2009; last updated April 4, 2014; expires April 4, 2017

Overview

Neurologic diseases can have profound impact on all areas of a patient's life, including cognitive, physical, sensory, emotional, and social functioning. Because few of these diseases are curable, treatment tends to focus on limiting disease progression and relieving symptoms. Therefore, health-related quality-of-life (HRQL) outcomes that assess functional ability and well-being are important for evaluating research and clinical practices. HRQL information is best obtained by asking patients directly, using validated questions with standardized response options. HRQL measurement tools are readily available and can easily be incorporated into practice without adding burden to the clinician. In this article, the authors review the value of collecting HRQL information, the types of HRQL measures that can be used for neurologic diseases, considerations to use when selecting a measure, and recent initiatives that can make HRQL assessment in neurology practical and clinically useful. New HRQL measurement tools, guidance documents, and potential uses of HRQL measures are presented.

Key points

 

• HRQL assessment provides patient-centered information that can be useful for research, clinical care, and performance monitoring.

 

• Selection of HRQL measures should be guided by the purpose of the assessment, the setting in which it will be used, and the characteristics of the measure.

 

• NIH-funded measurement systems, such as Neuro-QOL, provide standard assessment tools that can enable cross-disease comparisons along with disease-specific results.

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