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. 2017 Jul;32(7):1096-1102.
doi: 10.1002/mds.27046. Epub 2017 May 27.

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

Noelle E Carlozzi  1 , Rebecca E Ready  2 , Samuel Frank  3 , David Cella  4   5 , Elizabeth A Hahn  5 , Siera M Goodnight  1 , Stephen G Schilling  1   6 , Nicholas R Boileau  1 , Praveen Dayalu  7
Affiliations

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

Noelle E Carlozzi et al. Mov Disord. 2017 Jul.

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: HDQLIFE; Huntington's disease; Neuro-QoL; chorea; health-related quality of life; motor symptoms; patient-reported outcome (PRO); physical functioning.

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Conflict of interest statement

CONFLICTS OF INTEREST:

Carlozzi, N.E. currently has research grants from the NIH; she is also supported by grant funding from the NIH and CHDI. She provides patient reported outcome measurement selection and application consultation for Teva Pharmaceuticals.

Ready, R.E. declares that she has no conflicts of interest.

Frank, S. receives salary support from the Huntington Study Group for a study sponsored by Auspex Pharmaceuticals. There is no conflict of interest.

Cella, D. receives grant funding from the National Institutes of Health and reports that he has no conflicts of interest.

Hahn, E.A. currently has research grants from the NIH; she is also supported by grant funding from the NIH and PCORI, and by research contracts from Merck and EMMES; she declares no conflicts of interest.

Goodnight, S.M. is supported by grant funding from the NIH and the Craig H. Neilsen Foundation; she declares no conflicts of interest.

Schilling, S.G. has a research grant from NSF. He also is supported by grant funding from NIH. He declares no conflicts of interest.

Boileau, N. R. is supported by grant funding from the NIH; he declares no conflicts of interest.

Dayalu, P. currently has research grants from the NIH, Astra-Zeneca, and Vaccinex. He declares no conflicts of interest.

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