Proxies and other external raters: methodological considerations.

OBJECTIVE The purpose of this paper is to introduce researchers to the measurement and subsequent analysis considerations involved when using externally rated data. We will define and describe two categories of externally rated data, recommend methodological approaches for analyzing and interpreting data in these two categories, and explore factors affecting agreement between self-rated and externally rated reports. We conclude with a discussion of needs for future research. DATA SOURCES/STUDY SETTING Data sources for this paper are previous published studies and reviews comparing self-rated with externally rated data. STUDY DESIGN/DATA COLLECTION/EXTRACTION METHODS This is a psychometric conceptual paper. PRINCIPAL FINDINGS We define two types of externally rated data: proxy data and other-rated data. Proxy data refer to those collected from someone who speaks for a patient who cannot, will not, or is unavailable to speak for him or herself, whereas we use the term other-rater data to refer to situations in which the researcher collects ratings from a person other than the patient to gain multiple perspectives on the assessed construct. These two types of data differ in the way the measurement model is defined, the definition of the gold standard against which the measurements are validated, the analysis strategies appropriately used, and how the analyses are interpreted. There are many factors affecting the discrepancies between self- and external ratings, including characteristics of the patient, the proxy, and of the rated construct. Several psychological theories can be helpful in predicting such discrepancies. CONCLUSIONS Externally rated data have an important place in health services research, but use of such data requires careful consideration of the nature of the data and how it will be analyzed and interpreted.

[1]  C. Boake,et al.  Characteristics of impaired awareness after traumatic brain injury , 1998, Journal of the International Neuropsychological Society.

[2]  L. Bouter,et al.  Assessing pain in patients with severe cerebral palsy: development, reliability, and validity of a pain assessment instrument for cerebral palsy. , 2004, Archives of physical medicine and rehabilitation.

[3]  F. Gibbons,et al.  Social comparison as a mediator of response shift. , 1999, Social science & medicine.

[4]  G. Frisoni,et al.  Contrasting Results Between Caregiver's Report and Direct Assessment of Activities of Daily Living in Patients Affected by Mild and Very Mild Dementia: The Contribution of the Caregiver's Personal Characteristics , 1999, Journal of the American Geriatrics Society.

[5]  B. Carroll,et al.  Depression rating scales. A critical review. , 1973, Archives of general psychiatry.

[6]  J. Hanley,et al.  Proxy use of the Canadian SF-36 in rating health status of the disabled elderly. , 1998, Journal of clinical epidemiology.

[7]  W. Burke,et al.  Disagreement in the reporting of depressive symptoms between patients with dementia of the Alzheimer type and their collateral sources. , 1998, The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry.

[8]  S. Bassett,et al.  Use of proxies to measure health and functional status in epidemiologic studies of community-dwelling women aged 65 years and older. , 1996, American journal of epidemiology.

[9]  J. R. Landis,et al.  The measurement of observer agreement for categorical data. , 1977, Biometrics.

[10]  Paul G Shekelle,et al.  The quality of care provided to vulnerable older community-based patients with urinary incontinence. , 2004, Journal of the American Medical Directors Association.

[11]  G. Leung,et al.  Leisure time physical activity and mortality in Hong Kong: case-control study of all adult deaths in 1998. , 2004, Annals of epidemiology.

[12]  S. Bassett,et al.  Reliability of proxy response on mental health indices for aged, community-dwelling women. , 1990, Psychology and aging.

[13]  K. Langa,et al.  Out-of-Pocket Health Care Expenditures Among Older Americans with Dementia , 2004, Alzheimer disease and associated disorders.

[14]  L. Essen Proxy ratings of patient quality of life Factors related to patient–proxy agreement , 2004 .

[15]  E. Bruera,et al.  Patient preferences versus physician perceptions of treatment decisions in cancer care. , 2001, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[16]  J. Botha,et al.  Quality of Life after Pediatric Intestinal Transplantation: The Perception of Pediatric Recipients and Their Parents , 2004, American journal of transplantation : official journal of the American Society of Transplantation and the American Society of Transplant Surgeons.

[17]  C. Tanner,et al.  Impact of Alzheimer's-type dementia and information source on the assessment of depression , 1995 .

[18]  C. Layne Painful truths about depressives' cognitions. , 1983, Journal of clinical psychology.

[19]  M. Weissman,et al.  Screening for depression in a community sample. Understanding the discrepancies between depression symptom and diagnostic scales. , 1982, Archives of general psychiatry.

[20]  M. Eisemann,et al.  A new instrument to describe indicators of well-being in old-old patients with severe dementia – The Vienna List , 2004, Health and quality of life outcomes.

[21]  R. Tate,et al.  Comparison of the Sydney Psychosocial Reintegration Scale (SPRS) with the Community Integration Questionnaire (CIQ): psychometric properties , 2004, Brain injury.

[22]  E. Bruera,et al.  A comparison of patient and proxy symptom assessments in advanced cancer patients , 1999 .

[23]  R. Doody,et al.  Dementia Deficits Scale: Rating Self-Awareness of Deficits , 2004, Alzheimer disease and associated disorders.

[24]  N. Aaronson,et al.  The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: A review , 1992 .

[25]  L. Teri,et al.  Assessment of depression in patients with Alzheimer's disease: concordance among informants. , 1991, Psychology and aging.

[26]  S. Sudha,et al.  Elder‐Proxy Agreement Concerning the Functional Status and Medical History of the Older Person: The Impact of Caregiver Burden and Depressive Symptomatology , 1998, Journal of the American Geriatrics Society.

[27]  M H Liang,et al.  Discrepancies between self-reported and observed physical function in the elderly: the influence of response shift and other factors. , 1999, Social science & medicine.

[28]  I. Maremmani,et al.  Discordance of self ratings versus observer ratings in the improvement of depression: role of locus of control and aggressive behavior. , 1989, Comprehensive psychiatry.

[29]  B. Ott,et al.  Measurement of depression in dementia: Self vs clinician rating , 1992 .

[30]  B. Ober,et al.  Predictors of perceived memory impairment: do they differ in Alzheimer's disease versus normal aging? , 1998, Journal of clinical and experimental neuropsychology.

[31]  J. Teresi,et al.  Reporting source bias in estimating prevalence of cognitive impairment. , 1997, Journal of clinical epidemiology.

[32]  L. Perry,et al.  An exploration of nutrition and eating disabilities in relation to quality of life at 6 months post-stroke. , 2004, Health & social care in the community.

[33]  P. Rucci,et al.  Quality of life in patients with schizophrenia—comparison of self-report and proxy assessments , 2004, Social Psychiatry and Psychiatric Epidemiology.

[34]  W. Fordyce,et al.  The behavioral management of chronic pain: A response to critics , 1985, Pain.

[35]  L. Hardin,et al.  Problem-solving concepts and theories. , 2003, Journal of veterinary medical education.

[36]  L. Rubenstein,et al.  Systematic biases in functional status assessment of elderly adults: effects of different data sources. , 1984, Journal of gerontology.

[37]  The influence on patients' pain intensity ratings of antecedent reinforcement of pain talk or well talk. , 1986, Journal of behavior therapy and experimental psychiatry.

[38]  Donald R. Miller,et al.  Measurement Strategies Designed and Tested in the Veterans Health Study , 2004, The Journal of ambulatory care management.

[39]  N. Abell,et al.  Validation of the health care surrogate preferences scale. , 2004, Social work.

[40]  S. Zimmerman,et al.  Concordance of Proxy‐Perceived Change and Measured Change in Multiple Domains of Function in Older Persons , 2004, Journal of the American Geriatrics Society.

[41]  P. Neumann,et al.  The Use of Proxy Respondents in Studies of Older Adults: Lessons, Challenges, and Opportunities , 2000, Journal of the American Geriatrics Society.