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Arch Phys Med Rehabil. 2018 Sep;99(9):1763-1775. doi: 10.1016/j.apmr.2018.03.002. Epub 2018 Apr 3.

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.

Author information

1
Program in Occupational Therapy, Washington University School of Medicine, St Louis, MO; Department of Neurology, Washington University School of Medicine, St Louis, MO. Electronic address: wongal@wustl.edu.
2
Program in Occupational Therapy, Washington University School of Medicine, St Louis, MO.
3
Department of Neurology, Washington University School of Medicine, St Louis, MO.
4
Department of Medical Social Science and Center for Patient-Centered Outcomes, Northwestern University Feinberg School of Medicine, Chicago, IL.
5
Departments of Medical Social Science and Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL.
6
Department of Physical Medicine and Rehabilitation, Northwestern University Feinberg School of Medicine and Center for Rehabilitation Outcomes Research, Shirley Ryan Ability Lab, Chicago, IL.

Abstract

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.

KEYWORDS:

Brain injuries; International Classification of Functioning, Disability and Health; Multiple sclerosis; Outcome and process assessment (health care); Rehabilitation; Spinal cord injuries; Stroke

PMID:
29625094
DOI:
10.1016/j.apmr.2018.03.002
[Indexed for MEDLINE]

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