The Huntington's Disease health-related Quality of Life questionnaire (HDQoL): a disease-specific measure of health-related quality of life

• Published in: Clinical genetics Vol. 81; no. 2; pp. 117 - 122
• Main Authors: Hocaoglu, MB, Gaffan, EA, Ho, AK
• Format: Journal Article
• Language: English
• Published: Oxford, UK Blackwell Publishing Ltd 01.02.2012; Wiley-Blackwell
• Subjects: Adult; Aged; Biological and medical sciences; Degenerative and inherited degenerative diseases of the nervous system. Leukodystrophies. Prion diseases; Female; Fundamental and applied biological sciences. Psychology; General aspects. Genetic counseling; Genetics of eukaryotes. Biological and molecular evolution; HDQoL; Humans; Huntington Disease - epidemiology; Huntington Disease - psychology; Huntington's disease; Huntingtons disease; Male; Medical genetics; Medical sciences; Middle Aged; Molecular and cellular biology; Neurology; patient-reported outcome; pre-symptomatic/preclinical Huntington's disease; Psychometrics; Quality of Life; questionnaire; questionnaire, HDQoL; Questionnaires; Reproducibility of Results; Social and Behavioural Research in Clinical Genetics; Surveys and Questionnaires; Human; Nervous system diseases; Prognosis; Questionnaire; HDQoL; Health; Huntington disease; Patient; Huntington's disease; Genetic disease; Cerebral disorder; Quality of life; Symptomatology; Central nervous system disease; pre-symptomatic/preclinical Huntington's disease; patient-reported outcome; Genetics; Degenerative disease; Extrapyramidal syndrome
• ISSN: 0009-9163; 1399-0004
• DOI: 10.1111/j.1399-0004.2011.01823.x

Hocaoglu MB, Gaffan EA, Ho AK. The Huntington's disease health‐related quality of life questionnaire: a disease‐specific measure of health‐related quality of life. Huntington's disease (HD) is a genetic neurodegenerative disorder characterized by motor, cognitive and psychiatric disturbances, and yet there is no disease‐specific patient‐reported health‐related quality of life outcome measure for patients. Our aim was to develop and validate such an instrument, i.e. the Huntington's Disease health‐related Quality of Life questionnaire (HDQoL), to capture the true impact of living with this disease. Semi‐structured interviews were conducted with the full spectrum of people living with HD, to form a pool of items, which were then examined in a larger sample prior to data‐driven item reduction. We provide the statistical basis for the extraction of three different sets of scales from the HDQoL, and present validation and psychometric data on these scales using a sample of 152 participants living with HD. These new patient‐derived scales provide promising patient‐reported outcome measures for HD. Section Editor:
Aad Tibben, email: a.tibben@lumc.nl