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

被引：13

作者：

Carlozzi, Noelle E. ^{[1
]}

Ready, Rebecca E. ^{[2
]}

Frank, Samuel ^{[3
]}

Cella, David ^{[4
,5
]}

Hahn, Elizabeth A. ^{[5
]}

Goodnight, Siera M. ^{[1
]}

Schilling, Stephen G. ^{[1
,6
]}

Boileau, Nicholas R. ^{[1
]}

Dayalu, Praveen ^{[7
]}

机构：

[1] Univ Michigan, Dept Phys Med & Rehabil, North Campus Res Complex,2800 Plymouth Rd, Ann Arbor, MI 48109 USA

[2] Univ Massachusetts, Dept Psychol & Brain Sci, Amherst, MA 01003 USA

[3] Beth Israel Deaconess Med Ctr, Boston, MA 02215 USA

[4] Northwestern Univ, Inst Hlth Serv Res & Policy Studies, Feinberg Sch Med, Chicago, IL 60611 USA

[5] Northwestern Univ, Dept Med Social Sci, Chicago, IL 60611 USA

[6] Univ Michigan, Inst Social Res, Ann Arbor, MI USA

[7] Univ Michigan, Dept Neurol, Ann Arbor, MI USA

来源：

MOVEMENT DISORDERS | 2017年 / 32卷 / 07期

基金：

美国国家卫生研究院;

关键词：

Neuro-QoL; HDQLIFE; Huntington's disease; physical functioning; chorea; motor symptoms; health-related quality of life; patient-reported outcome (PRO); CONTROLLED-TRIAL; EXERCISE PROGRAM; CLINICAL-TRIALS; PROGRESSION; PEOPLE; CHOREA; HD; FEASIBILITY; PREMANIFEST; DIAGNOSIS;

D O I：

10.1002/mds.27046

中图分类号：

R74 [神经病学与精神病学];

学科分类号：

摘要：

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 a >.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. (C) 2017 International Parkinson and Movement Disorder Society

引用

页码：1096 / 1102

页数：8

共 43 条

[1] STRIATAL AND NIGRAL NEURON SUBPOPULATIONS IN RIGID HUNTINGTONS-DISEASE - IMPLICATIONS FOR THE FUNCTIONAL-ANATOMY OF CHOREA AND RIGIDITY-AKINESIA [J].

ALBIN, RL ;

REINER, A ;

ANDERSON, KD ;

PENNEY, JB ;

YOUNG, AB .

ANNALS OF NEUROLOGY, 1990, 27 (04) :357-365

[2] The Missing Voice of Patients in Drug-Safety Reporting [J].

Basch, Ethan .

NEW ENGLAND JOURNAL OF MEDICINE, 2010, 362 (10) :865-869

[3] Supporting physical activity engagement in people with Huntington's disease (ENGAGE-HD): study protocol for a randomized controlled feasibility trial [J].

Busse, Monica ;

Quinn, Lori ;

Dawes, Helen ;

Jones, Carys ;

Kelson, Mark ;

Poile, Vincent ;

Trubey, Rob ;

Townson, Julia ;

Edwards, Rhiannon Tudor ;

Rosser, Anne ;

Hood, Kerenza .

TRIALS, 2014, 15

[4] A Randomized Feasibility Study of a 12-Week Community-Based Exercise Program for People With Huntington's Disease [J].

Busse, Monica ;

Quinn, Lori ;

Debono, Katy ;

Jones, Karen ;

Collett, Johnathan ;

Playle, Rebecca ;

Kelly, Mark ;

Simpson, Sharon ;

Backx, Karianne ;

Wasley, David ;

Dawes, Helen ;

Rosser, Anne .

JOURNAL OF NEUROLOGIC PHYSICAL THERAPY, 2013, 37 (04) :149-158

[5] CONVERGENT AND DISCRIMINANT VALIDATION BY THE MULTITRAIT-MULTIMETHOD MATRIX [J].

CAMPBELL, DT ;

FISKE, DW .

PSYCHOLOGICAL BULLETIN, 1959, 56 (02) :81-105

[6] New measures to capture end of life concerns in Huntington disease: Meaning and Purpose and Concern with Death and Dying from HDQLIFE (a patient-reported outcomes measurement system) [J].

Carlozzi, N. E. ;

Downing, N. R. ;

McCormack, M. K. ;

Schilling, S. G. ;

Perlmutter, J. S. ;

Hahn, E. A. ;

Lai, J. -S. ;

Frank, S. ;

Quaid, K. A. ;

Paulsen, J. S. ;

Cella, D. ;

Goodnight, S. M. ;

Miner, J. A. ;

Nance, M. A. .

QUALITY OF LIFE RESEARCH, 2016, 25 (10) :2403-2415

[7] The development of a new computer adaptive test to evaluate chorea in Huntington disease: HDQLIFE Chorea [J].

Carlozzi, N. E. ;

Downing, N. R. ;

Schilling, S. G. ;

Lai, J. -S. ;

Goodnight, S. M. ;

Miner, J. A. ;

Frank, S. A. .

QUALITY OF LIFE RESEARCH, 2016, 25 (10) :2429-2439

[8] HDQLIFE: development and assessment of health-related quality of life in Huntington disease (HD) [J].

Carlozzi, N. E. ;

Schilling, S. G. ;

Lai, J. -S. ;

Paulsen, J. S. ;

Hahn, E. A. ;

Perlmutter, J. S. ;

Ross, C. A. ;

Downing, N. R. ;

Kratz, A. L. ;

McCormack, M. K. ;

Nance, M. A. ;

Quaid, K. A. ;

Stout, J. C. ;

Gershon, R. C. ;

Ready, R. E. ;

Miner, J. A. ;

Barton, S. K. ;

Perlman, S. L. ;

Rao, S. M. ;

Frank, S. ;

Shoulson, I. ;

Marin, H. ;

Geschwind, M. D. ;

Dayalu, P. ;

Goodnight, S. M. ;

Cella, D. .

QUALITY OF LIFE RESEARCH, 2016, 25 (10) :2441-2455

[9] HDQLIFE: the development of two new computer adaptive tests for use in Huntington disease, Speech Difficulties, and Swallowing Difficulties [J].

Carlozzi, N. E. ;

Schilling, S. G. ;

Lai, J. -S. ;

Perlmutter, J. S. ;

Nance, M. A. ;

Waljee, J. F. ;

Miner, J. A. ;

Barton, S. K. ;

Goodnight, S. M. ;

Dayalu, P. .

QUALITY OF LIFE RESEARCH, 2016, 25 (10) :2417-2427

[10] Neuro-QOL Brief measures of health-related quality of life for clinical research in neurology [J].

Cella, D. ;

Lai, J-S. ;

Nowinski, C. J. ;

Victorson, D. ;

Peterman, A. ;

Miller, D. ;

Bethoux, F. ;

Heinemann, A. ;

Rubin, S. ;

Cavazos, J. E. ;

Reder, A. T. ;

Sufit, R. ;

Simuni, T. ;

Holmes, G. L. ;

Siderowf, A. ;

Wojna, V. ;

Bode, R. ;

McKinney, N. ;

Podrabsky, T. ;

Wortman, K. ;

Choi, S. ;

Gershon, R. ;

Rothrock, N. ;

Moy, C. .

NEUROLOGY, 2012, 78 (23) :1860-1867

← 1 2 3 4 5 →