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Mov Disord. 2016 May;31(5):725-33. doi: 10.1002/mds.26546. Epub 2016 Feb 26.

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

Author information

1
Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
2
Department of Neurology, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
3
Avid Radiopharmaceuticals, Philadelphia, Pennsylvania, USA.
4
National Institute of Neurological Disorders and Stroke, Bethesda, Maryland, USA.

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. © 2016 Movement Disorder Society.

KEYWORDS:

Parkinson's disease; assessment; health-related quality of life; patient-reported outcomes

PMID:
26919664
DOI:
10.1002/mds.26546
[Indexed for MEDLINE]

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