Conceptual Underpinnings of the Quality of Life in Neurological Disorders (Neuro-QoL): Comparisons of Core Sets for Stroke, Multiple Sclerosis, Spinal Cord Injury, and Traumatic Brain Injury

被引:5
作者
Wong, Alex W. K. [1 ,2 ]
Lau, Stephen C. L. [1 ]
Fong, Mandy W. M. [2 ]
Cella, David [3 ,4 ]
Lai, Jin-Shei [3 ,5 ]
Heinemann, Allen W. [6 ,7 ]
机构
[1] Washington Univ, Sch Med, Program Occupat Therapy, 4444 Forest Pk Ave,Campus Box 8505, St Louis, MO 63108 USA
[2] Washington Univ, Sch Med, Dept Neurol, St Louis, MO 63108 USA
[3] Northwestern Univ, Feinberg Sch Med, Dept Med Social Sci, Chicago, IL 60611 USA
[4] Northwestern Univ, Feinberg Sch Med, Ctr Patient Ctr Outcomes, Chicago, IL 60611 USA
[5] Northwestern Univ, Feinberg Sch Med, Dept Pediat, Chicago, IL 60611 USA
[6] Northwestern Univ, Feinberg Sch Med, Dept Phys Med & Rehabil, Chicago, IL 60611 USA
[7] Shirley Ryan Abil Lab, Ctr Rehabil Outcomes Res, Chicago, IL USA
来源
ARCHIVES OF PHYSICAL MEDICINE AND REHABILITATION | 2018年 / 99卷 / 09期
基金
美国国家卫生研究院;
关键词
Brain injuries; International Classification of Functioning; Disability and Health; Multiple sclerosis; Outcome and process assessment (health care); Rehabilitation; Spinal cord injuries; Stroke; INTERNATIONAL CLASSIFICATION; ENVIRONMENTAL-FACTORS; MEASUREMENT SYSTEM; ITEM DEVELOPMENT; HEALTH; ICF; DISABILITY; VALIDATION; LINKING; CARE;
D O I
10.1016/j.apmr.2018.03.002
中图分类号
R49 [康复医学];
学科分类号
100215 ;
摘要
Objective: To determine the extent to which the content of the Quality of Life in Neurological Disorders (Neuro-QoL) covers the International Classification of Functioning, Disability and Health (ICF) Core Sets for multiple sclerosis (MS), stroke, spinal cord injury (SCI), and traumatic brain injury (TBI) using summary linkage indicators. Design: Content analysis by linking content of the Neuro-QoL to corresponding ICF codes of each Core Set for MS, stroke, SCI, and TBI. Setting: Three academic centers. Participants: None. Interventions: None. Main Outcome Measures: Four summary linkage indicators proposed by MacDermid et al were estimated to compare the content coverage between Neuro-QoL and the ICF codes of Core Sets for MS, stroke, MS, and TBI. Results: Neuro-QoL represented 20% to 30% Core Set codes for different conditions in which more codes in Core Sets for MS (29%), stroke (28%), and TBI (28%) were covered than those for SCI in the long-term (20%) and early postacute (19%) contexts. Neuro-QoL represented nearly half of the unique Activity and Participation codes (43%-49%) and less than one third of the unique Body Function codes (12%-32%). It represented fewer Environmental Factors codes (2%-6%) and no Body Structures codes. Absolute linkage indicators found that at least 60% of Neuro-QoL items were linked to Core Set codes (63%-95%), but many items covered the same codes as revealed by unique linkage indicators (7%-13%), suggesting high concept redundancy among items. Conclusions: The Neuro-QoL links more closely to ICF Core Sets for stroke, MS, and TBI than to those for SCI, and primarily covers activity and participation ICF domains. Other instruments are needed to address concepts not measured by the Neuro-QoL when a comprehensive health assessment is needed. (C) 2018 by the American Congress of Rehabilitation Medicine
引用
收藏
页码:1763 / 1775
页数:13
相关论文
共 46 条
[1]   New Clinical End Points in Rehabilitation Medicine: Tools for Measuring Quality of Life [J].
Abresch, Richard T. ;
Carter, Gregory T. ;
Han, Jay J. ;
McDonald, Craig M. .
AMERICAN JOURNAL OF HOSPICE & PALLIATIVE MEDICINE, 2009, 26 (06) :483-492
[2]  
[Anonymous], 2001, J CONSUM PSYCHOL, V10, P71
[3]   Developing Core Sets for Persons With Traumatic Brain Injury Based on the International Classification of Functioning, Disability, and Health [J].
Bernabeu, Montserrat ;
Laxe, Sara ;
Lopez, Raquel ;
Stucki, Gerold ;
Ward, Anthony ;
Barnes, Michael ;
Kostanjsek, Nenad ;
Reed, Geoffrey ;
Tate, Robyn ;
Whyte, John ;
Zasler, Nathan ;
Cieza, Alarcos .
NEUROREHABILITATION AND NEURAL REPAIR, 2009, 23 (05) :464-467
[4]  
Bickenbach J., 2012, ICF CORE SETS MANUAL
[5]   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
[6]   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
[7]   Icf linking rules:: An update based on lessons learned [J].
Cieza, A ;
Geyh, S ;
Chatterji, S ;
Kostanjsek, N ;
Üstün, B ;
Stucki, G .
JOURNAL OF REHABILITATION MEDICINE, 2005, 37 (04) :212-218
[8]   Development of ICF core sets for patients with chronic conditions [J].
Cieza, A ;
Ewert, T ;
Üstün, TB ;
Chatterji, S ;
Kostanjsek, N ;
Stucki, G .
JOURNAL OF REHABILITATION MEDICINE, 2004, 36 :9-11
[9]   ICF Core Sets for individuals with spinal cord injury in the long-term context [J].
Cieza, A. ;
Kirchberger, I. ;
Biering-Sorensen, F. ;
Baumberger, M. ;
Charlifue, S. ;
Post, M. W. ;
Campbell, R. ;
Kovindha, A. ;
Ring, H. ;
Sinnott, A. ;
Kostanjsek, N. ;
Stucki, G. .
SPINAL CORD, 2010, 48 (04) :305-312
[10]   The development of ICF Core Sets for multiple sclerosis: results of the International Consensus Conference [J].
Coenen, Michaela ;
Cieza, Alarcos ;
Freeman, Jenny ;
Khan, Fary ;
Miller, Deborah ;
Weise, Andrea ;
Kesselring, Jurg .
JOURNAL OF NEUROLOGY, 2011, 258 (08) :1477-1488