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Evaluating cognition in individuals with Huntington disease: Neuro-QoL cognitive functioning measures

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Abstract

Purpose

Cognitive functioning impacts health-related quality of life (HRQOL) for individuals with Huntington disease (HD). The Neuro-QoL includes two patient-reported outcome (PRO) measures of cognition—Executive Function (EF) and General Concerns (GC). These measures have not previously been validated for use in HD. The purpose of this analysis is to evaluate the reliability and validity of the Neuro-QoL Cognitive Function measures for use in HD.

Methods

Five hundred ten individuals with prodromal or manifest HD completed the Neuro-QoL Cognition measures, two other PRO measures of HRQOL (WHODAS 2.0 and EQ5D), and a depression measure (PROMIS Depression). Measures of functioning The Total Functional Capacity and behavior (Problem Behaviors Assessment) were completed by clinician interview. Objective measures of cognition were obtained using clinician-administered Symbol Digit Modalities Test and the Stroop Test (Word, Color, and Interference). Self-rated, clinician-rated, and objective composite scores were developed. We examined the Neuro-QoL measures for reliability, convergent validity, discriminant validity, and known-groups validity.

Results

Excellent reliabilities (Cronbach’s alphas ≥ 0.94) were found. Convergent validity was supported, with strong relationships between self-reported measures of cognition. Discriminant validity was supported by less robust correlations between self-reported cognition and other constructs. Prodromal participants reported fewer cognitive problems than manifest groups, and early-stage HD participants reported fewer problems than late-stage HD participants.

Conclusions

The Neuro-QoL Cognition measures provide reliable and valid assessments of self-reported cognitive functioning for individuals with HD. Findings support the utility of these measures for assessing self-reported cognition.

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Acknowledgements

Work on this manuscript was supported by the National Institutes of Health (NIH), National Institute of Neurological Disorders and Stroke (R01NS077946), and the National Center for Advancing Translational Sciences (UL1TR000433). In addition, a portion of this study sample was collected in conjunction with the Predict-HD study. The Predict-HD study was supported by the NIH, National Institute of Neurological Disorders and Stroke (R01NS040068), the NIH Center for Inherited Disease Research (provided supported for sample phenotyping), and the CHDI Foundation (award to the University of Iowa). Dr. Kratz was supported during manuscript preparation by a grant from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (1K01AR064275; PI: Kratz). We thank the University of Iowa, the Investigators and Coordinators of this study, the study participants, the National Research Roster for Huntington Disease Patients and Families, the Huntington Study Group, and the Huntington’s Disease Society of America. We acknowledge the assistance of Jeffrey D. Long, Hans J. Johnson, Jeremy H. Bockholt, and Roland Zschiegner. We also acknowledge Roger Albin, Kelvin Chou, and Henry Paulsen for the assistance with participant recruitment. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH. HDQLIFE Site Investigators and Coordinators: Noelle Carlozzi, Praveen Dayalu, Anna L. Kratz, Stephen Schilling, Amy Austin, Matthew Canter, Siera Goodnight, Jennifer Miner, Nicholas Migliore (University of Michigan, Ann Arbor, MI); Jane S. Paulsen, Nancy Downing, Isabella DeSoriano, Courtney Hobart, Amanda Miller (University of Iowa, Iowa City, IA); Kimberly Quaid, Melissa Wesson (Indiana University, Indianapolis, IN); Christopher Ross, Gregory Churchill, Mary Jane Ong (Johns Hopkins University, Baltimore, MD); Susan Perlman, Brian Clemente, Aaron Fisher, Gloria Obialisi, Michael Rosco (University of California Los Angeles, Los Angeles, CA); Michael McCormack, Humberto Marin, Allison Dicke (Rutgers University, Piscataway, NJ); Joel Perlmutter, Stacey Barton, Shineeka Smith (Washington University, St. Louis, MO); Martha Nance, Pat Ede (Struthers Parkinson’s Center); Stephen Rao, Anwar Ahmed, Michael Lengen, Lyla Mourany, Christine Reece, (Cleveland Clinic Foundation, Cleveland, OH); Michael Geschwind, Joseph Winer (University of California – San Francisco, San Francisco, CA), David Cella, Richard Gershon, Elizabeth Hahn, Jin-Shei Lai (Northwestern University, Chicago, IL).

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Authors and Affiliations

  1. Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, 633 N St Clair, 19th Floor, Chicago, IL, 60611, USA

    Jin-Shei Lai & David Cella

  2. Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA

    Siera Goodnight, Anna L. Kratz, Jenna Russell & Noelle E. Carlozzi

  3. College of Nursing, Texas A&M, Bryan, TX, USA

    Nancy R. Downing

  4. Department of Psychological and Brain Sciences, University of Massachusetts, Amherst, MA, USA

    Rebecca E. Ready

  5. Departments of Psychiatry, Neurology, and Psychological and Brain Sciences, Carver College of Medicine, The University of Iowa, Iowa City, IA, USA

    Jane S. Paulsen

  6. Institute of Cognitive and Clinical Neurosciences, School of Psychological Sciences, Monash University, Clayton, VIC, Australia

    Julie C. Stout

  7. Department of Pathology, Rowan University, Piscataway, NJ, USA

    Michael K. McCormack

  8. Departments of Psychiatry, Neurology, Pharmacology and Neuroscience, Johns Hopkins University, Baltimore, MD, USA

    Christopher Ross

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  1. Jin-Shei Lai
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Correspondence to Jin-Shei Lai.

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Lai, JS., Goodnight, S., Downing, N.R. et al. Evaluating cognition in individuals with Huntington disease: Neuro-QoL cognitive functioning measures. Qual Life Res 27, 811–822 (2018). https://doi.org/10.1007/s11136-017-1755-6

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