Aims
We aim to make quality of life assessment a routine and explicit consideration in care, management and clinical research in Huntington’s disease. This aim is strategically supported by a varied and enthusiastic international group of individuals from the breadth of the HD landscape, including patients, families, lay organisations, researchers, clinicians and care providers.
Previous and ongoing projects
We are interested in actively championing and facilitating quality of life assessment and improvement in Huntington’s disease. Some of the projects we are involved in are listed below.
- Developing appropriate assessment tools to measure and chart quality of life in patients and carers.
- Creating an online care and management resource for the Huntington’s journey.
- Using psychological approaches to impact quality of life in Huntington’s.
Previous publications arising from this working group
- Hocaoglu MB, Gaffan EA & Ho AK. The Huntington’s Disease health-related Quality of Life questionnaire (HDQoL): A disease-specific measure of health-related quality of life. Clinical Genetics. 2012. 81(2), 117-122. PMID: 22151007
- 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-related Quality of Life questionnaire (HDQoL). Journal of Neurology. 2012. 259(9), 1793-1800. PMID: 22392579
- Ho AK, Hocaoglu MB, for the European Huntington’s Disease Network Quality of Life Working Group. Impact of Huntington’s across the entire disease spectrum: the phases and stages of disease from the patient perspective. Clinical Genetics. 2011. 80(3): 235-239. PMID: 21736564
- Ho, A. K., Horton, M. C., Landwehrmeyer, G. B., Burgunder, J. M., Tennant, A., Downie, L., … & Simpson, S. A. (2019). Meaningful and Measurable Health Domains in Huntington’s Disease: Large-Scale Validation of the Huntington’s Disease Health-Related Quality of Life Questionnaire Across Severity Stages. Value in Health, 22(6), 712-720. ScienceDirect: S109830151930083X
Contact
Lead Facilitator:
School of Psychology and Clinical Languages Sciences, University of Reading, UK.
Hon. Consultant Clinical Psychologist Royal Berkshire NHS Foundation Trust, UK.
Co-lead Facilitator:
European Huntington’s Association Liaison Officer
Associated EHDN Language Area Coordinator:
