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

Publication date: Available online 3 April 2018
Source:Archives of Physical Medicine and Rehabilitation
Author(s): Alex W.K. Wong, Stephen C.L. Lau, Mandy W.M. Fong, David Cella, Jin-Shei Lai, Allen W. Heinemann
ObjectiveTo determine the extent to which the content of the Quality of Life in Neurological Disorders (Neuro-QoL) covers the ICF core sets for multiple sclerosis (MS), stroke, spinal cord injury (SCI), and traumatic brain injury (TBI) using summary linkage indicators.DesignContent analysis by linking content of the Neuro-QoL to corresponding ICF codes of each core set for MS, stroke, SCI, and TBI.SettingThree academic centersParticipantsNoneInterventionsNoneMain Outcome MeasureFour summary linkage indicators proposed by MacDermid and colleagues were estimated to compare the content coverage between Neuro-QoL and the ICF codes of core sets for MS, stroke, MS, and TBI.ResultsNeuro-QoL represented 20%-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 LT (20%) and EPA (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 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 same codes as revealed by unique linkage indicators (7%-13%), suggesting high concept redundancy among items.ConclusionThe 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.



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