Agreement Between Community-Dwelling Persons With Stroke and Their Proxy Responders on the Neuro-QoL Instruments

Abstract

Objective(s): To identify differences in agreement between communitydwelling persons with stroke and their proxy responses on the short-form versions of the Quality of Life in Neurological Disorders (Neuro-QoL) instruments. Design: Cross-sectional observational sub-study of the longitudinal, multisite, multi-condition Neuro-QoL validation study. Setting: In-person interview-guided patient-reported outcomes. Participants: Convenience sample of 86 dyads of community-dwelling persons with stroke and their proxy respondents. Interventions: N/A. Main Outcome Measure(s): Dyads concurrently completed short-forms of 8 or 9 items each for the 13 Neuro-QoL domains using the patient-proxy perspective. Difference scores, intraclass correlation coefficients (ICCs), effect size statistics, and Bland-Altman plots were examined to determine the nature and extent of proxy response bias. Results: We found no differences between patient and proxy scores on the Applied Cognition-General Concerns, Depression, Satisfaction with Social Roles and Activities, Stigma, and Upper Extremity Function (Fine Motor) short forms. Stroke patients rated themselves more favorably on the Applied Cognition-Executive Function, Ability to Participate in Social Roles and Activities, Lower Extremity Function (Mobility), Positive Affect and Well-Being, Anxiety, Fatigue, Emotional and Behavioral Dyscontrol, and Fatigue short-forms. We found no consistent pattern of differences in physical, mental-cognitive, mental-emotional, or social health HRQOL domains. The largest mean patient-proxy difference observed was 3 T-score points on the Lower Extremity Function (Mobility), which represents 0.3 SD on the T-score metric. However, Bland-Alman plots demonstrated substantial variation in difference scores among dyads. Conclusions: Proxy responses on Neuro-QoL short forms can complement or substitute for responses of moderate to high-functioning communitydwelling persons with stroke in the evaluation of post stroke research interventions; however proxy individual proxy responses may vary substantially. Additional validation is needed for other stroke populations.