Article

OBJECTIVE: To examine agreement between patient and proxy responses on the
Quality of Life in Neurological Disorders (Neuro-QoL) instruments after stroke.
DESIGN: Cross-sectional observational substudy of the longitudinal, multisite,
multicondition Neuro-QoL validation study. SETTING: In-person, interview-guided,
patient-reported outcomes. PARTICIPANTS: Convenience sample of dyads (N=86) of
community-dwelling persons with stroke and their proxy respondents.
INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Dyads concurrently
completed short forms of 8 or 9 items for the 13 Neuro-QoL adult domains using
the patient-proxy perspective. Agreement was examined at the scale-level with
difference scores, intraclass correlation coefficients (ICCs), effect size
statistics, and Bland-Altman plots, and at the item-level with kappa
coefficients. RESULTS: We found no mean differences between patients and proxies
on the Applied Cognition-General Concerns, Depression, Satisfaction With Social
Roles and Activities, Stigma,
and Upper Extremity Function (Fine Motor,
activities of daily living) short forms. 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, Emotional and Behavioral Dyscontrol, and Fatigue short
forms. The largest mean patient-proxy difference observed was 3 T-score points on
the Lower Extremity Function (Mobility). ICCs ranged from .34 to .59. However,
limits of agreement showed dyad differences exceeding +/-20 T-score points, and
item-level agreement ranged from not significant to weighted kappa=.34.
CONCLUSIONS: Proxy responses on Neuro-QoL short forms can complement responses of
moderate- to high-functioning community-dwelling persons with stroke and augment
group-level analyses, but do not substitute for individual patient ratings.
Validation is needed for other stroke populations.
CI - Copyright (c) 2015 American Congress of Rehabilitation Medicine. Published by
Elsevier Inc. All rights reserved.

Langue : ANGLAIS