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

被引:455
|
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
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 50 条
  • [1] Measuring Health-Related Quality of Life (HRQL) in Neurology Clinical Research: Neuro-QOL Item Banks and Disease Targeted Scales
    Cella, David
    Scala-Moy, Claudia
    Miller, Deborah
    Peterman, Amy
    Gershon, Richard
    Victorson, David
    Nowinski, Cindy
    Choi, Seung
    Lai, Jin-Shei
    Bode, Rita
    Reder, Anthony
    [J]. NEUROLOGY, 2009, 72 (11) : A424 - A424
  • [2] Pediatric Neuro-QOL: Health Related Quality of Life for Children with Epilepsy
    Lai, Jin-Shei
    Cella, David
    Zelko, Frank
    Nowinski, Cindy
    Cavazos, Jose E.
    Moy, Claudia
    [J]. ANNALS OF NEUROLOGY, 2010, 68 (04) : S40 - S40
  • [3] Neuro-QoL health-related quality of life measurement system: Validation in Parkinson's disease
    Nowinski, Cindy J.
    Siderowf, Andrew
    Simuni, Tanya
    Wortman, Catherine
    Moy, Claudia
    Cella, David
    [J]. MOVEMENT DISORDERS, 2016, 31 (05) : 725 - 733
  • [4] An evaluation of health-related quality of life in patients with systemic lupus erythematosus using PROMIS and Neuro-QoL
    Lai, Jin-Shei
    Beaumont, Jennifer L.
    Jensen, Sally E.
    Kaiser, Karen
    Van Brunt, David L.
    Kao, Amy H.
    Chen, Shih-Yin
    [J]. CLINICAL RHEUMATOLOGY, 2017, 36 (03) : 555 - 562
  • [5] An evaluation of health-related quality of life in patients with systemic lupus erythematosus using PROMIS and Neuro-QoL
    Jin-Shei Lai
    Jennifer L. Beaumont
    Sally E. Jensen
    Karen Kaiser
    David L. Van Brunt
    Amy H. Kao
    Shih-Yin Chen
    [J]. Clinical Rheumatology, 2017, 36 : 555 - 562
  • [6] The Neuro-QOL project: Identifying and selecting health-related quality of life (HRQL) domains to evaluate in neurological conditions
    Nowinski, Cindy J.
    Peterman, Amy H.
    Miller, Deborah
    Victorson, David
    Moy, Claudia
    Cella, David
    [J]. NEUROLOGY, 2007, 68 (12) : A227 - A227
  • [7] Validity of the Neurology Quality-of-Life (Neuro-QoL) measurement system in adult epilepsy
    Victorson, David
    Cavazos, Jose E.
    Holmes, Gregory L.
    Reder, Anthony T.
    Wojna, Valerie
    Nowinski, Cindy
    Miller, Deborah
    Buono, Sarah
    Mueller, Allison
    Moy, Claudia
    Cella, David
    [J]. EPILEPSY & BEHAVIOR, 2014, 31 : 77 - 84
  • [8] Quality-of-Life Measures in Children With Neurological Conditions: Pediatric Neuro-QOL
    Lai, Jin-Shei
    Nowinski, Cindy
    Victorson, David
    Bode, Rita
    Podrabsky, Tracy
    McKinney, Natalie
    Straube, Don
    Holmes, Gregory L.
    McDonald, Craig M.
    Henricson, Erik
    Abresch, R. Ted
    Moy, Claudia S.
    Cella, David
    [J]. NEUROREHABILITATION AND NEURAL REPAIR, 2012, 26 (01) : 36 - 47
  • [9] 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
    Carlozzi, Noelle E.
    Ready, Rebecca E.
    Frank, Samuel
    Cella, David
    Hahn, Elizabeth A.
    Goodnight, Siera M.
    Schilling, Stephen G.
    Boileau, Nicholas R.
    Dayalu, Praveen
    [J]. MOVEMENT DISORDERS, 2017, 32 (07) : 1096 - 1102
  • [10] Health-related quality of life in neurology
    Meyers, AR
    Gage, H
    Hendricks, A
    [J]. ARCHIVES OF NEUROLOGY, 2000, 57 (08) : 1224 - 1227