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Patient‐reported outcomes in Huntington's disease: Quality of life in neurological disorders (Neuro‐QoL) and Huntington's disease health‐related quality of life (HDQLIFE) physical function measures |
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| Authors: | Noelle E. Carlozzi PhD Rebecca E. Ready PhD Samuel Frank MD David Cella PhD Elizabeth A. Hahn MS Siera M. Goodnight MPH Stephen G. Schilling PhD Nicholas R. Boileau BA Praveen Dayalu MD |
| Affiliation: | 1. Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, Michigan, USA;2. Department of Psychological and Brain Sciences, University of Massachusetts, Amherst, Massachusetts, USA;3. Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA;4. Institute for Health Services Research & Policy Studies, Feinberg School of Medicine, Northwestern University, Chicago, Illinois, USA;5. Department of Medical Social Sciences, Northwestern University, Chicago, Illinois, USA;6. Institute for Social Research, University of Michigan, Ann Arbor, Michigan, USA;7. Department of Neurology, University of Michigan, Ann Arbor, Michigan, USA |
| Abstract: | Background : There is a need for patient‐reported outcome measures that capture the impact that motor impairments have on health‐related quality of life in individuals with Huntington's disease. Objectives : The objectives of this study were to establish the reliability and validity of new physical functioning patient‐reported outcome measures in Huntington's disease. Methods : A total of 510 individuals with Huntington's disease completed 2 Quality of Life in Neurological Disorders (Lower Extremity Function and Upper Extremity Function) and 3 Huntington's Disease Health‐Related Quality of Life (Chorea, Speech Difficulties, and Swallowing Difficulties) measures. Clinician‐rated and generic self‐report measures were also administered. Results : Reliabilities for the new patient reported physical functioning measures were excellent (all Cronbach's α > .92). Convergent, discriminant validity and known group validity was supported. Conclusions : The results provide psychometric support for new patient‐reported physical functioning measures and the fact that these measures can be used as clinically meaningful endpoints in Huntington's disease research and clinical practice. © 2017 International Parkinson and Movement Disorder Society |
| Keywords: | Neuro‐QoL HDQLIFE Huntington's disease physical functioning chorea motor symptoms health‐related quality of life patient‐reported outcome (PRO) |