Huntington’s disease health-related quality of life questionnaire (HDQoL)
What is the HDQoL© ?
The Huntington’s Disease health-related Quality of Life questionnaire (HDQoL©) is a standardised instrument for measuring health-related quality of life. It is a validated disease-specific measure designed for Huntington’s disease. The HDQoL© can provide a summary score of overall health-related quality of life, as well as scores on several discrete scales.
The HDQoL© is an initiative of the Quality of Life Working Group of the European Huntington’s Disease Network (EHDN). This international project is funded by the EHDN, led by Dr Aileen Ho as Principal Investigator, and based at the University of Reading, U.K.
Who is the HDQoL© for?
The HDQoL© is for people who are living with Huntington’s disease. This includes people who are at risk for Huntington’s, people who have tested positive for the Huntington’s gene but do not have symptoms,and also for people at early through to late stages of disease. The HDQoL© can be used across the full spectrum of Huntington’s disease.
When can the HDQoL© be used?
The HDQoL© can be used when a measure of health-related quality of life is needed from people with Huntington’s disease. This could be for clinical or research purposes such as for clinical trials, intervention studies etc. It is also suitable for use for patient care and management.
Why use the HDQoL© ?
It is a reliable and valid instrument that is relevant to people living with Huntington’s disease.
It was created to cater for Huntington’s disease in particular, and is the product of extensive interviews with people living with Huntington’s disease.
Most people complete the HDQoL© in approximately 20 minutes, or often less time, and are happy to do it again in the future as they feel that it captures their experience of living with Huntington’s disease well.
The HDQoL© is the measure of quality of life recommended by the multi-national NINDS Common Data Elements project for Huntington’s disease.
In a review commissioned by the International Movement Disorders Society’s Committee on Rating Scale Development, the HDQoL© was the foremost instrument amongst HD specific questionnaires as the only fully suggested scale.
The HDQoL© comes with a parallel carer/partner version
The HDQoL© is available in multiple languages
The HDQoL© is used in on-going clinical, research and care work.
The HDQoL© is free to use, please contact us for enquiries: webmaster@hdqol.info
Publications
Ho AK, Horton, M.C., Landwehrmeyer, G.B., Burgunder, J.M. and Tennant, A. (2019). Meaningful and measurable health domains in Huntington’s: large-scale validation of the Huntington’s disease health-related quality of life questionnaire (HDQoL) across severity stages. Value in Health, 22(6), pp.712-720.
Mestre TA, Carlozzi NE, Ho AK,, Burgunder JM, Walker F, Davis AM, Busse M, Quinn L, Rodrigues FB, Sampaio C & Goetz CG. (2018). Quality of Life in Huntington’s Disease: Critique and Recommendations for Measures Assessing Patient Health‐Related Quality of Life and Caregiver Quality of Life. Movement Disorders, 33(5), 742-749.
Hocaoglu MB, Gaffan EA & Ho AK, (2012). 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-related quality of life questionnaire (HDQoL). Journal of Neurology, 259(9), 1793-1800.
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.
Ho AK, Hocaoglu MB, European Huntington’s Disease Network Quality of Life Working Group. (2011). Impact of Huntington’s across the entire disease spectrum: the phases and stages of disease from the patient perspective. Clinical Genetics, Sep;80(3):235-9.
Ho AK, Gilbert AS, Mason SL, Goodman AO, Barker RA. (2009). Health-related quality of life in Huntington’s disease: Which factors matter most? Movement Disorders 24(4):572-76.
Ho AK, Robbins AO, Barker RA. (2006). Huntington’s disease patients have selective problems with insight. Movement Disorders 21(3):385-9.
Ho AK, Robbins AO, Walters SJ, Kaptoge S, Sahakian BJ, Barker RA. (2004). Health-related quality of life in Huntington’s disease: a comparison of two generic instruments, SF-36 and SIP. Movement Disorders, 2004 Nov;19(11):1341-8.