title: Symptom distress and quality-of-life assessment at the end of life: the role of proxy response.
abstract: This study sought to advance understanding of the relationships among proxy and patient reports of symptom distress and quality of life (QOL). English-speaking adults (n=86), their nurses (n=86), and family caregivers (n=49) from 11 hospice/palliative care organizations completed the Memorial Symptom Assessment Scale (MSAS) and McGill Quality of Life Questionnaire (MQOL) at hospice/palliative care enrollment, at 1 week, 2 weeks, then monthly until death or discharge. Patients and proxies provided similar average reports of symptom distress, both physical and psychological, but MSAS correlations were generally poor. MQOL correlations were higher for nurse-patient than for patient-caregiver dyads. Based on small differences between ratings but only moderate levels of correlation, proxy response appears to be a fair substitute for patient response, suggesting that symptom and QOL reports should be obtained from all available respondents throughout the course of clinical care or research in the hospice/palliative care setting.
authors.affiliation: Division of General Internal Medicine, University of Colorado at Denver and Health Sciences Center, Denver, 80262, USA. jean.kutner@uchsc.edu
authors.forename: Jean S
authors.initials: JS
authors.lastname: Kutner
authors.forename: Lucinda L
authors.initials: LL
authors.lastname: Bryant
authors.forename: Brenda L
authors.initials: BL
authors.lastname: Beaty
authors.forename: Diane L
authors.initials: DL
authors.lastname: Fairclough
mesh_terms: D017028:Caregivers / Q000706:statistics & numerical data; D015331:Cohort Studies; D005260:Female; D017051:Hospice Care / Q000706:statistics & numerical data*; D006801:Humans; D008297:Male; D010166:Palliative Care / Q000706:statistics & numerical data*; D019727:Proxy / Q000706:statistics & numerical data*; D011788:Quality of Life; D013315:Stress, Psychological / Q000175:diagnosis* / Q000453:epidemiology* / Q000523:psychology; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000523:psychology / Q000706:statistics & numerical data; D019452:Terminally Ill / Q000523:psychology / Q000706:statistics & numerical data*; D014481:United States / Q000453:epidemiology