What is the HDQoL-C ©? 

The HDQoL-C is a Huntington’s Disease Specific, multi- dimensional and validated tool for measuring subjective quality of life in family caregivers of persons with Huntington’s Disease.

The HDQoL-C is a 34 item scale that incorporates measures of the individual’s physical health, psychological state, level of independence. Social relationships and personal beliefs that was developed with family carers of persons with Huntington’s Disease.

Who would complete the HDQoL-C ©?

The HDQol-C© was initially developed for use with Spousal caregivers and has been adapted for use with  all family caregivers of persons with Huntington’s Disease.

The HDQoL-C© has been translated into a number of languages and demonstrates multi-lingual and multi-cultural consistency.

The HDQoL-C© is also available in a short form version.

Why use the HDQoL-C ©?

The HDQoL-C© can be used if a quality of life measure is required for individual, research or clinical purposes.

Family caregivers may wish to use the HDQoL-C© to identify areas in which their quality of life could potentially be improved.  This information might be useful during family discussions, in clinic or other health care settings and may be helpful in guiding where to best place any available resources or services available to you.

Using the HDQoL-C © as an intervention for family carers

The HDQoL-C© can be used by health professionals to understand the impact that living with Huntington’s Disease has on the family.

By asking a family member to complete the questionnaire, their experiences can be quantified at baseline giving the opportunity for comparison within the individual’s experiences at each completion.

Using the HDQoL-C© can guide the clinician in terms of where resources may be best placed for the family in order to improve quality of life.

The HDQoL-C© is used in ongoing Euro-HDB studies measuring the burden of Huntington’s Disease  in several European countries and in the USA.