Assessing quality of life after stroke. The value and limitations of proxy ratings

Background and Purpose Because many stroke survivors have cognitive and communication disorders, self-reported information on a patient’s quality of life (QL) cannot always be obtained. Proxy ratings may be used to prevent exclusion of this highly relevant subgroup of patients from QL studies. The purpose of this study was to evaluate both the value and possible limitations of such proxy ratings. Methods The patient sample was composed of 437 patients who had suffered a stroke 6 months earlier. QL was assessed by means of the Sickness Impact Profile (SIP). For 108 patients who were not communicative because of cognitive or linguistic deficits, proxy ratings on the SIP were provided by the patients’ significant others. For 228 of the 329 communicative patients, both self-reported and proxy SIP ratings were obtained. Results When mean SIP scores for patients with both self-reported and proxy-derived data available were compared, the proxy mean scores were generally in close agreement with those of the patie...