is an outcome measurement. The prerequisite is a systematic data collection and
evaluation about the well-being of patients and their caregivers. It is used in
chronic diseases. So quality of life refers to the overall status of a
combination of factors: a person's health, symptoms, and level of physical and
social functioning. If an illness and its treatment have a negative impact on a
person's sense of well-being and ability to perform daily activities, then
quality of life may be poor.
The Quality of Life Working Group is a multidisciplinary group of professionals and lay people who are interested in matters of quality of life in Huntington’s disease.
The working group aims to develop two instruments to assess quality of life:
- a self-report questionnaire for carers of HD patients and
- a self-report questionnaire for HD affected people.
The Quality of Life Working Group focuses on the following projects:
- Development and validation of a quality of life questionnaire for family members who are carers of people with Huntington’s disease.
- Development of a disease-specific health-related quality of life instrument for people with Huntington’s disease.
At the moment (June 2008) the Quality of Life Working Group consists of 29 active members from Austria, Belgium, Czech Republic, France, Germany, Italy, The Netherlands, Portugal, Spain and the United Kingdom, including psychologists and social workers, as well as members of European Huntington associations representing HD families.