Quality of Life Research

, Volume 27, Issue 3, pp 811–822 | Cite as

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

  • Jin-Shei LaiEmail author
  • Siera Goodnight
  • Nancy R. Downing
  • Rebecca E. Ready
  • Jane S. Paulsen
  • Anna L. Kratz
  • Julie C. Stout
  • Michael K. McCormack
  • David Cella
  • Christopher Ross
  • Jenna Russell
  • Noelle E. Carlozzi



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.


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.


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.


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.


Huntington disease Cognition Neuro-QoL Patient-centered outcomes 



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).

Compliance with ethical standards

Conflict of interest

All authors report no disclosures and no conflicts of interest relevant to the manuscript.

Ethical approval

This project was approved by the Institutional Research Board of all participating institutions. All procedures performed in this study involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Supplementary material

11136_2017_1755_MOESM1_ESM.docx (42 kb)
Supplementary material 1 (DOCX 42 KB)
11136_2017_1755_MOESM2_ESM.docx (36 kb)
Supplementary material 2 (DOCX 35 KB)


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Copyright information

© Springer International Publishing AG, part of Springer Nature 2017

Authors and Affiliations

  • Jin-Shei Lai
    • 1
    Email author
  • Siera Goodnight
    • 2
  • Nancy R. Downing
    • 3
  • Rebecca E. Ready
    • 4
  • Jane S. Paulsen
    • 5
  • Anna L. Kratz
    • 2
  • Julie C. Stout
    • 6
  • Michael K. McCormack
    • 7
  • David Cella
    • 1
  • Christopher Ross
    • 8
  • Jenna Russell
    • 2
  • Noelle E. Carlozzi
    • 2
  1. 1.Department of Medical Social SciencesNorthwestern University Feinberg School of MedicineChicagoUSA
  2. 2.Department of Physical Medicine and RehabilitationUniversity of MichiganAnn ArborUSA
  3. 3.College of Nursing, Texas A&MBryanUSA
  4. 4.Department of Psychological and Brain SciencesUniversity of MassachusettsAmherstUSA
  5. 5.Departments of Psychiatry, Neurology, and Psychological and Brain Sciences, Carver College of MedicineThe University of IowaIowa CityUSA
  6. 6.Institute of Cognitive and Clinical Neurosciences, School of Psychological SciencesMonash UniversityClaytonAustralia
  7. 7.Department of PathologyRowan UniversityPiscatawayUSA
  8. 8.Departments of Psychiatry, Neurology, Pharmacology and NeuroscienceJohns Hopkins UniversityBaltimoreUSA

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