Quality-of-life Assessment
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RULE #1: RESIDENTS BEFORE THEIR REPS
With half of all residents showing some degree of cognitive impairment, many nursing homes believe that asking family members and significant others to assess quality of care is both more time-efficient and reliable than asking the residents themselves to do it. Presumably healthy (or healthier) and cognitively intact, family members can capably respond to a mailed questionnaire (no need to interview them in person) with meaningful answers.
There are two objections to this reasoning. First, it assumes that residents and their family members share the same preferences for service and perceptions of care quality. Often they don't, however. Writes Social Work professor Scott Miyake Geron of Boston University (1), "…the findings of researchers who have explored consumer perceptions of long-term care (are) that consumers' definitions of quality of long-term-care services are simply different from those of professionals, family members, and other stakeholders (pg. 69)." Similar perceptions? Maybe. Identical? Hardly. Adds Kane (2): "Proxy inaccuracy may be compounded for nursing home residents if families visit infrequently or staff are not well acquainted with residents (pg. 32)."
Also objectionable is the presumption that all cognitively impaired residents are suspect evaluators of care quality. Recent research, by us and others, shows that the majority of residents with mild to moderate cognitive impairment and even some of those with severe impairment can indeed provide useful, reliable information about the care they receive, the services they prefer, and their quality of life. In one study, Kane et al. (3) were able to interview 1,988 residents from 40 nursing homes in five states and, based on the results, develop Quality-of-Life scales for about 60% of them. "This was achieved," the authors write, "even though at least half of the sample included the more impaired levels on a cognitive performance scale; only 19% of the sample had a perfect cognitive score, and 17% had the worst possible cognitive score (pg. M245)."
Our research shows similar results. In two studies, we set out to identify a simple cognitive screen that would accurately identify residents capable of providing meaningful responses to quality assessment questions (5, 6). Both studies showed that residents who score two or more on
the Minimum Data Set (MDS) Recall subscale can accurately describe the care they receive. Our more recent research shows even more encouraging results: About half of residents who score 1 on the MDS Recall subscale can reliably self-report pain and symptoms of depression, express meaningful preferences for daily care (they can tell you, for example, what activities they like or where they would like to have their breakfast), and accurately describe care they receive on a daily basis (they can recall, for example, if staff helped them to the bathroom or provided walking assistance that day).
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