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 recent review commissioned by the International Movement Disorders Society’s Committee on Rating Scale Development, the HDQoL© was again 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

HDQoL© References

Other references