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In November 2002, the federal Centers for Medicare and Medicaid Services (CMS) started publishing quality measures for the nation’s nursing homes on its website, Nursing Homes Compare, in an effort to help families select good facilities. Of the 10
Second, the pain-prevalence measure was the only one qualified by a consumer warning, which noted the complexities of interpreting pain rates. CMS cautions, “Comparing these (pain) percentages is different from the other measures because the percentages may mean different things (www.cms.hhs.gov/quality/nh qi/NHCconsumerlang.pdf). CMS WRONG? Almost as soon as the rate of pain prevalence was published, it started to drop. Today it stands at 6% nationally. In a press release, CMS lauds the decline as evidence of an improvement in outcomes. Some long-term care experts, however, are concerned about the decline. Geriatrician Robert Kane of the University of Minnesota's School of Public Health puts it bluntly: “The CMS figure is wrong.” Who is right? This question sparks a sometimes smoldering debate that until recently was confined to the pages of academic journals. In going public with the pain-prevalence measure, though, CMS has a created a consumer issue out of a complex methodological controversy. An examination of this issue raises troubling questions about the consumer utility of the CMS pain-prevalence measure. Consider the data source of the measure: The CMS pain-prevalence rate derives from data gathered from the federally mandated Minimum Data Set (MDS), which nursing homes use regularly to assess residents. Two MDS items drive the pain estimate, one concerning pain frequency, the other, pain intensity. For the CMS quality measure, pain is deemed present if the resident experiences moderate pain daily or excruciating pain at any time during the most recent seven-day period. So far so good. Controversy creeps in, however, when assessment procedures are examined. The MDS neither stipulates the use of a standardized scale for measuring pain nor requires staff to ask residents directly about pain, although it encourages them to do so. Instead, MDS leaves the door open for less direct assessments based on chart reviews, observations and staff feedback.FLEXIBLE There's good reason for a flexible procedure, according to John N. Morris of the Hebrew Rehabilitation Center for the Aged Research and Training Institute in Boston. Morris, one of the researchers who developed the MDS, is also the principal investigator of the CMS-contracted study that evaluated the validity and reliability of the nursing home quality measures (available at www.cms.hhs.gov/quality/nhqi/FinalReport.pdf). SELF-REPORTING CONTROVERSY There's good reason for a flexible procedure, according to John N. Morris of the Hebrew Rehabilitation Center for the Aged Research and Training Institute in Boston. Morris, one of the researchers who developed the MDS, is also the principal investigator of the CMS-contracted study that evaluated the validity and reliability of the nursing home quality measures (available at www.cms.hhs.gov/quality/nhqi/FinalReport.pdf). FLEXIBLE Morris said the problem with standardized pain scales—a number of them are available—is that only a third of nursing home residents are incapable of responding to them. He explained, “If all we did was ask patients who can respond to these scales, we'd get no responses from palliative-care patients and very few from moderately to severely cognitively impaired patients.” To evaluate pain in these residents, he argues, nursing home staff must use less direct assessment methods. However, other researchers charge that these methods underdetect pain. Self-reporting is considered the gold standard for pain assessment because pain is so subjective, but critics say too few nursing home residents are asked directly about their pain. The MDS assessment procedure “treats all residents as if they are cognitively impaired” and unable to respond for themselves, Kane asserted. At the same time, he adds, it disenfranchises cognitively impaired residents who are capable of answering questions about their pain experience. The result, he says, is that MDS pain-prevalence rates represent the “best guess of somebody who's feeding information to the MDS assessment nurse.” Experts on both sides of the argument fortify their positions with research data. The validation study by Morris and his colleagues, for instance, featured a nursing home sample of 209 facilities in six states with a total patient sample of 5,758 residents for an onsite field review. “We went in with an underlying hypothesis that there would be systematic underreporting of pain,” Morris recalls. Instead, the pain quality measure was among 12 measures that achieved the highest level of validity. Despite some evidence of interstate differences in prevalence rates, a finding that Morris says might explain discrepancies in the various reported estimates, pain prevalence was largely deemed reliably measured. In the final report, the researchers highly recommended this quality measure (www.cms.hhs.gov/quality/nhqi/FinalReport.pdf). Other researchers criticize this study, arguing that its reliability estimate is compromised: It is based on a comparison of MDS assessment findings, and the MDS assessment for pain is inherently flawed, for the reasons discussed earlier. These smaller studies employ a different comparison and find significantly different results. In one study, for example, my colleagues at the Borun Center for Gerontological Research (http://borun.medsch.ucla.edu) at the University of California, Los Angeles, visited 30 nursing homes to compare residents' reports of pain with the nurses' weekly reports in the residents' charts. Among 143 residents who reported pain to the researchers, more than 50% had nurse-assessed pain scores of zero during the preceding month ( Journal of the American Medical Directors Association , 6, 1–9). A second study found that only 38% of 262 residents who reported chronic pain had accurate MDS documentation of their pain level ( Journal of Gerontology, Medical Sciences , 2004, 59: M281–M285). A recently completed study by Kane and his colleagues also found that residents self-reported more pain than was recorded on their MDS assessments. ‘DEFIES CREDIBILITY’ Despite their contrasting conclusions, both camps in the pain-measure debate appear to agree that the CMS pain prevalence estimate of 6% nationally seems low, as Morris puts it. Vincent Mor, a distinguished professor of medical science at Brown University in Providence, R.I., and a coinvestigator with Morris on the quality measure validation study, expresses greater surprise: “Defies credibility, doesn't it?” he asked. Well, yes, it does. So, is a 47% drop over two years in pain prevalence among long-stay residents good news or bad news? Could it mean that more residents are receiving better treatment so that their pain is relieved? “Yes,” said Mor. Could it mean that nursing homes are underreporting pain? “Absolutely,” stated Mor. Unfortunately, he added, because the measure captures only pain prevalence, not treatment, “we can't tell if there is any basis in fact” for the drop in the pain rate. CMS reports that it is continuing to refine the nursing home quality measures (www.cms.hhs.gov/media/press/release.asp?Counter=947). Meanwhile, government-sponsored quality-improvement organizations (QIOs) in each state are working with nursing homes to improve care—and CMS evaluates the effectiveness of QIOs based partly on whether the facilities they work with register a drop in their quality measure prevalence rates. “The quality-indicator system is not perfect,” Mor observed, “but it's better than what was available.” Perhaps Mor is right on this point, but a family member choosing among nursing homes must wonder about the pain prevalence measure. Considering the profound disagreements in the research community concerning the best methods for assessing pain, the fact that the prevalence measure has dropped to startling low levels, and that there is no way to discern what that drop really means—what does it mean if one facility reports a pain-prevalence rate of 36% and another, 6%? One could argue that at best this information is useless, and at worst it's downright misleading.CONSUMER CONFUSION The problem is that most consumers know little of the controversies surrounding the pain measure. They likely assume that a low prevalence rate indicates better care—as it does with the other quality measures. CMS's cautionary warning (“However, this isn't always true [with the pain measure]”) is still online, but it is crowded by so much other information on the website that if you aren't looking for this advisory specifically, you might never stumble across it. Pain pervasively affects quality of life, and its assessment, treatment and management are critically important indicators of a facility's quality of care. Consumers deserve a meaningful measure of a nursing home's pain-care quality, and the CMS measure falls short of that mark. For now, CMS could steer consumers straight with a simple modification to its website. Where it reports a facility's quality measures, it could highlight the pain-prevalence measure with a hyperlinked phrase—“Read this!”—that, when clicked, takes visitors directly to the warning note about the complexities of interpreting pain estimates. While it is working to refine its quality measures, CMS should heed its own warning: Until science shows a significant degree of confidence that a decline in pain prevalence truly heralds an improvement in care, CMS should in no way pressure nursing homes or QIOs that work with them to demonstrate a drop in prevalence due to this quality measure.Anna Rahman is the principal editor for the Borun Center for Gerontological Research, affiliated with the University of California, Los Angeles, and the Jewish Home for the Aging. She also is project manager for the Borun Center’s new website at http://borun.medsch.ucla.edu. The website offers free access to six training modules designed to improve daily care in nursing homes, including pain care.
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