Affiliations: Director, Stroke Rehabilitation Research, Kessler
Foundation Research Center, Associate Professor of Physical Medicine and
Rehabilitation/ Neurology and Neurosciences, University of Medicine and
Dentistry, NJ Medical School, NJ, USA
Note: [] Address for correspondence: Anna M. Barrett, MD Stroke
Rehabilitation Research, Kessler Foundation Research Center, 1199 Pleasant
Valley Way, West Orange, NJ 07052, USA. Tel.: +1 973 324 3569; Fax: +1 973 243
6984; E-mail: abarrett@kesslerfoundation.org
Abstract: Patient-reported, subjective outcomes are promoted as a standard for
ethical, valid studies in many neurological disorders. Such outcomes are
considered potentially more sensitive and specific to important therapeutic
effects, and may be more linked to disability and disease-related life losses
than conventional assessments of impairment (e.g. ability to walk, performance
on language tests, serological or radiological indices). Self-report is
invaluable to identify social and emotional consequences of brain injury:
depression, changes in intimate and family relationships, social role and
community participation losses. However, common stroke-related
neuropsychological deficits are likely to confound subjective stroke outcome
measures. The scientific community focused on stroke-related health outcomes
may arrive at {significantly underestimated} patient reports of stroke-related
disability, caused by a failure to adjust for the effect on self-report of
spatial neglect, deficits of magnitude estimation, pathologic alteration of
self-awareness, and alteration in distributed cortical systems supporting
emotional semantics and abstraction.
Keywords: Quality of life, anosognosia, measurement validity, self-report, stroke outcomes
