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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

Published:April 03, 2018DOI:https://doi.org/10.1016/j.apmr.2018.03.002

      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

      List of abbreviations:

      HRQoL (health-related quality of life), ICF (International Classification of Functioning, Disability and Health), MS (multiple sclerosis), Neuro-QoL (Quality of Life in Neurological Disorders), PRO (patient-reported outcome), SCI (spinal cord injury), TBI (traumatic brain injury)
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