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Evaluating Individual Change With the Quality of Life in Neurological Disorders (Neuro-QoL) Short Forms

  • Allan J. Kozlowski
    Correspondence
    Corresponding author Allan J. Kozlowski, PhD, Department of Rehabilitation Medicine, Icahn School of Medicine at Mount Sinai, 1 Gustave L. Levy Place, New York, NY 10029.
    Affiliations
    Department of Rehabilitation Medicine, Icahn School of Medicine at Mount Sinai, New York, NY
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  • David Cella
    Affiliations
    Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL
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  • Kristian P. Nitsch
    Affiliations
    Center for Rehabilitation Outcomes Research, Rehabilitation Institute of Chicago, Chicago, IL

    Department of Psychology, Illinois Institute of Technology, Chicago, IL
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  • Allen W. Heinemann
    Affiliations
    Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL

    Center for Rehabilitation Outcomes Research, Rehabilitation Institute of Chicago, Chicago, IL

    Department of Physical Medicine and Rehabilitation, Feinberg School of Medicine, Northwestern University, Chicago, IL
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Published:December 28, 2015DOI:https://doi.org/10.1016/j.apmr.2015.12.010

      Highlights

      • Clinicians benefit from instruments on which change can be measured for individual patients.
      • The Quality of Life in Neurological Disorders (Neuro-QoL) Measurement System covers domains of physical, mental, and social functioning for persons with a variety of neurologic conditions.
      • Measurement error varies across scale ranges.
      • Conditional minimal detectable change (cMDC) indices improve sensitivity to measure change.
      • We provide cMDC tables to facilitate individual change measurement for 14 Neuro-QoL adult short forms.

      Abstract

      Objective

      To provide a clinically useful means of interpreting change for individual patients on the Quality of Life in Neurological Disorders (Neuro-QoL) adult short forms (SFs) by applying a classical test theory concept for interpreting individual change.

      Design

      Secondary analysis of existing data.

      Setting

      Community.

      Participants

      Persons with neurologic conditions including stroke, epilepsy, amyotrophic lateral sclerosis, multiple sclerosis, and Parkinson disease residing in community settings.

      Interventions

      Not applicable.

      Main Outcome Measures

      Neuro-QoL SFs for Applied Cognition–General Concerns, Applied Cognition–Executive Function, Applied Cognition–Combined, Ability to Participate in Social Roles and Activities, Satisfaction With Social Roles and Activities, Positive Affect and Well-Being, Depression, Stigma, Upper Extremity Function (Fine Motor, Activities of Daily Living), Lower Extremity Function (Mobility), Anxiety, Sleep Disturbance, Fatigue, and Emotional and Behavioral Dyscontrol. We estimated conditional minimal detectable change (cMDC) indices from the pooled SEs adjusted for a 95% confidence interval using the average of the SEs for any given pair of scores multiplied by the z score, or ([SEScore1 + SEScore2]/2) * (1.96) * (SQRT(2)).

      Results

      The cMDC indices are generally smallest in the midrange of all scales, ranging from 3.6 to 11.2 T-score points, and higher on the outer quartiles ranging from 3.7 to 21.6 T-score points. The lowest midrange cMDCs were for Satisfaction With Social Roles and Activities (3.6–4.7 T-score points), and the largest were for Sleep Disturbance (9.4–11.2 T-score points).

      Conclusions

      Change indices can help clinicians and investigators identify differences for individual patients or subjects that are large enough to motivate treatment change. cMDCs can reduce misclassification of magnitudes of change that are near the margins of error across the range of the Neuro-QoL SFs.

      Keywords

      List of abbreviations:

      CI (confidence interval), cMDC (conditional minimal detectable change), IRT (item response theory), MDC (minimal detectable change), Neuro-QoL (Quality of Life in Neurological Disorders), SF (short form)
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