Neuro-QoL health-related quality of life measurement system: Validation in Parkinson's disease

Cindy J. Nowinski*, Andrew Siderowf, Tanya Simuni, Catherine Wortman, Claudia Moy, David Cella

*Corresponding author for this work

Research output: Contribution to journalArticle

18 Scopus citations

Abstract

Introduction: Neuro-QoL is a multidimensional patient-reported outcome measurement system assessing aspects of physical, mental, and social health identified by neurology patients and caregivers as important. One of the first neurology-specific patient-reported outcome measure systems created using modern test development methods, Neuro-Qol enables brief, yet precise, assessment and the ability to conduct both PD-specific and cross-disease comparisons. We present results of Neuro-QoL clinical validation using a sample of PD patients. Methods: A total of 120 PD patients recruited from academic medical centers were assessed at baseline, 1 week, and 6 months. Assessments included Neuro-QoL and general and PD-specific validity measures. Results: Participants were 62% male and 95% white (average age=66); H & Y stages were 1 (16%), 2 (61%), 3 (18%), and 4 (5%). Internal consistency and test-retest reliability of Neuro-QoL ranged from Cronbach's alphas=0.81 to 0.94 with intraclass correlation coefficients=0.66 to 0.80. Pearson's correlations between Neuro-QoL and legacy measures were generally moderate and in expected directions. UPDRS Part 2 was moderately correlated with Neuro-QoL Upper Extremity and Mobility, respectively (r's=-0.44; -0.59). Parkinson's Disease Questionnaire-39 and Neuro-QoL measures of similar constructs showed strong-to-moderate correlations (r's=0.70-0.44). Neuro-QoL measures of fatigue, mobility, positive emotion, and emotional/behavioral control showed responsiveness to self-reported change. Conclusions: Neuro-QoL is valid for use in PD clinical research. Reliability for all but two measures is sufficient for group comparisons, with some evidence supporting responsiveness to change. Neuro-QoL possesses characteristics, such as brevity, flexibility in administration, and suitability, for cross-disease comparisons that may be advantageous to users in a variety of settings.

Original languageEnglish (US)
Pages (from-to)725-733
Number of pages9
JournalMovement Disorders
Volume31
Issue number5
DOIs
StatePublished - May 1 2016

Keywords

  • Assessment
  • Health-related quality of life
  • Parkinson's disease
  • Patient-reported outcomes

ASJC Scopus subject areas

  • Neurology
  • Clinical Neurology

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