Neuro-QOL Brief measures of health-related quality of life for clinical research in neurology

被引:553
作者
Cella, D. [1 ]
Lai, J-S. [1 ]
Nowinski, C. J. [1 ]
Victorson, D. [1 ]
Peterman, A. [2 ]
Miller, D. [3 ]
Bethoux, F. [3 ]
Heinemann, A. [1 ,4 ]
Rubin, S. [5 ]
Cavazos, J. E. [6 ]
Reder, A. T. [7 ]
Sufit, R. [1 ]
Simuni, T. [1 ]
Holmes, G. L. [8 ]
Siderowf, A. [9 ]
Wojna, V. [10 ]
Bode, R. [1 ]
McKinney, N. [1 ]
Podrabsky, T. [1 ]
Wortman, K. [1 ]
Choi, S. [1 ]
Gershon, R. [1 ]
Rothrock, N. [1 ]
Moy, C. [11 ]
机构
[1] Northwestern Univ, Feinberg Sch Med, Chicago, IL 60611 USA
[2] Univ N Carolina, Charlotte, NC 28223 USA
[3] Cleveland Clin Fdn, Cleveland, OH 44195 USA
[4] Rehabil Inst Chicago, Chicago, IL 60611 USA
[5] Northshore Univ Hlth Syst, Evanston, IL USA
[6] Univ Texas Hlth Sci Ctr San Antonio, San Antonio, TX 78229 USA
[7] Univ Chicago, Chicago, IL 60637 USA
[8] Dartmouth Coll, Hitchcock Med Ctr, Dartmouth Med Sch, Hanover, NH 03756 USA
[9] Univ Penn, Philadelphia, PA 19104 USA
[10] Univ Puerto Rico, San Juan, PR 00936 USA
[11] Natl Inst Neurol Disorders & Stroke, Bethesda, MD USA
关键词
PATIENT-REPORTED OUTCOMES; DISEASE;
D O I
10.1212/WNL.0b013e318258f744
中图分类号
R74 [神经病学与精神病学];
学科分类号
100204 [神经病学];
摘要
Objective: To address the need for brief, reliable, valid, and standardized quality of life (QOL) assessment applicable across neurologic conditions. Methods: Drawing from larger calibrated item banks, we developed short measures (8-9 items each) of 13 different QOL domains across physical, mental, and social health and evaluated their validity and reliability. Three samples were utilized during short form development: general population (Internet-based, n = 2,113); clinical panel (Internet-based, n = 553); and clinical outpatient (clinic-based, n = 581). All short forms are expressed as T scores with a mean of 50 and SD of 10. Results: Internal consistency (Cronbach alpha) of the 13 short forms ranged from 0.85 to 0.97. Correlations between short form and full-length item bank scores ranged from 0.88 to 0.99 (0.82-0.96 after removing common items from banks). Online respondents were asked whether they had any of 19 different chronic health conditions, and whether or not those reported conditions interfered with ability to function normally. All short forms, across physical, mental, and social health, were able to separate people who reported no health condition from those who reported 1-2 or 3 or more. In addition, scores on all 13 domains were worse for people who acknowledged being limited by the health conditions they reported, compared to those who reported conditions but were not limited by them. Conclusion: These 13 brief measures of self-reported QOL are reliable and show preliminary evidence of concurrent validity inasmuch as they differentiate people based upon number of reported health conditions and whether those reported conditions impede normal function. Neurology (R) 2012;78:1860-1867
引用
收藏
页码:1860 / 1867
页数:8
相关论文
共 19 条
[1]
Cella D., 2006, Qual Life Res, V14, P1353
[2]
The future of outcomes measurement: item banking, tailored short-forms, and computerized adaptive assessment [J].
Cella, David ;
Gershon, Richard ;
Lai, Jin-Shei ;
Choi, Seung .
QUALITY OF LIFE RESEARCH, 2007, 16 (Suppl 1) :133-141
[3]
The Neurology Quality-of-Life Measurement Initiative [J].
Cella, David ;
Nowinski, Cindy ;
Peterman, Amy ;
Victorson, David ;
Miller, Deborah ;
Lai, Jin-Shei ;
Moy, Claudia .
ARCHIVES OF PHYSICAL MEDICINE AND REHABILITATION, 2011, 92 (10) :S28-S36
[4]
Patient-reported outcomes measurement and management with innovative methodologies and technologies [J].
Chang, Chih-Hung .
QUALITY OF LIFE RESEARCH, 2007, 16 (Suppl 1) :157-166
[5]
Letting the CAT out of the bag - Comparing computer adaptive tests and an 11-item short form of the Roland-Morris Disability Questionnaire [J].
Cook, Karon F. ;
Choi, Seung W. ;
Crane, Paul K. ;
Deyo, Richard A. ;
Johnson, Kurt L. ;
Amtmann, Dagmar .
SPINE, 2008, 33 (12) :1378-1383
[6]
The suitability of patient-based measures in the field of Parkinson's disease: A systematic review [J].
Den Oudsten, Brenda L. ;
Van Heck, Guns L. ;
De Vries, Jolanda .
MOVEMENT DISORDERS, 2007, 22 (10) :1390-1401
[7]
Quality of life in amyotrophic lateral sclerosis/motor neuron disease: A structured review [J].
Epton, Joanna ;
Harris, Robert ;
Jenkinson, Crispin .
AMYOTROPHIC LATERAL SCLEROSIS, 2009, 10 (01) :15-26
[8]
Gershon RC, QUAL LIFE RES
[9]
The impact of next and back buttons on time to complete and measurement reliability in computer-based surveys [J].
Hays, Ron D. ;
Bode, Rita ;
Rothrock, Nan ;
Riley, William ;
Cella, David ;
Gershon, Richard .
QUALITY OF LIFE RESEARCH, 2010, 19 (08) :1181-1184
[10]
Measuring outcomes for neurological disorders: a review of disease-specific health status instruments for three degenerative neurological conditions [J].
Heffernan, Catherine ;
Jenkinson, Crispin .
CHRONIC ILLNESS, 2005, 1 (02) :131-142