Q. I am a primary care provider and currently looking for a specific tool. This tool is for a family member to use to give a more objective appraisal of a patient. Can you recommend something? I've already tried to have him use a patient questionnaire and have had him try to put himself in his wife's shoes, but that didn't work. Do you have any other ideas?

A. I'm not quite sure what it is you're trying to assess, but I gather you are hoping to use the family member (husband) as a sort of proxy observer-rater, in lieu of the patient herself (his wife).

One problem is that such proxy ratings are not always reliably correlated with how the patient is feeling. For example, Novella et al (Qual Life Res 2001;10(5):443-52) studied the agreement between self reports and proxy reports of health-related quality of life (H RQoL) in a sample of 76 patients with mild to moderate Alzheimer's disease. Patients and proxies completed the '17-item DUKE health profile'. The items were rephrased for the proxy. The proportion of exact agreement between patients and proxies on the 17 items ranged from 26.3 to 52.6%; this was considered "poor to moderate agreement".

As you might expect, agreement was higher for measures of function that are directly observable (physical health, disability) and relatively poor for more subjective measures. Interestingly, proxies tended to rate the patients as having a lower quality of life than the patients themselves. This study indicated that "assessments by proxies should be used with caution."

That said, you could try getting hold of the 17-item DUKE health profile as modified in the study, and giving it to the patient's husband to complete. The DUKE assesses five constructs (ambulation, emotional symptoms, activities with friends or relatives, health perception, and pain) and quantitates cognition, social self-esteem, confinement, and somatic symptoms other than pain (Parkerson et al; Fam Pract 1991 Dec;8(4):396-401).

Another scale that has been adapted for proxy use is the Sickness Impact Scale (Low & Gutman, Clin Nurs Res 2003 Feb;12(1):28-48). But unless your patient (the wife) is unable to communicate because of stroke, Alzheimer's, etc., I would suggest a more direct measure of her own quality of life or behavior. For this purpose--depending, again, on what you are trying to assess and the age or the patient--many scales are useful, including the DUKE itself, or the Instrumental Activities of Daily Living Measure (Lawton MP, Brody E: Gerontologist 9:179-186, 1969).

October 2003

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