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Huntington's Disease Health Related Quality of Life (HDQoL)
Availability
Please visit this website for more information about the instrument: Click here for the HDQoL website.
Classification
Supplemental for Huntington's Disease (HD)
Short Description of Instrument
The Huntington's Disease Health Related Quality of Life (HDQoL) questionnaire is a health-related quality of life instrument developed for individuals living with HD. It is a disease-specific measure; used in a wide spectrum of HD patients from prodromal to later stage disease. Specific and Summary Measures are provided. The Average time of completion is 20 minutes across all disease stages but can take less time for pre, at-risk and early HD patients.
 
A proxy version is also available.
Psychometric Properties

The HDQOL was Validated for use specifically in HD. Scale sensitivity is currently still under investigation.
References
Ho AK, Hocaoglu MB et al. (2011). Impact of Huntington's across the entire disease spectrum: the phases and stages of disease from the patient perspective. Clinical Genetics 80(3): 235-239.
 
Hocaoglu MB, Gaffan EA& Ho AK. (2012) The Huntington's Disease health-related Quality of Life questionnaire (HDQoL): A disease-specific measure of health-related quality of life. Clinical Genetics 81(2), 117-122.
 
Hocaoglu MB, Gaffan EA& Ho AK. Health-Related Quality of Life in Huntington's Disease patients: A comparison of proxy assessment and patient self-rating using the disease-specific Huntington's Disease Health Telated Quality of Life questionnaire (HDQoL). J Neurol 2012 Sep;259(9):1793-800. doi: 10.1007/s00415-011-6405-2.

 

Document last updated March 2018