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Identifying, Tracking, and Managing Pain in LTC
Little is known about the effect of structured interventions for pain assessment and management in LTC. Pain is challenging to measure in this setting because of its subjective and variable nature, the inability of many residents to articulate pain, and the need for repeat measures to assess changes and treatment response. The Minimum Data Set (MDS) 2.0 includes three pain items that have relatively good reliability and validity among cognitively intact patients, but not among those with cognitive impairments or trouble communicating. MDS 3.0, to be implemented in October 2010, includes a more extensive pain assessment interview using either self-report or observation. This article suggests some ways in which LTC settings can better identify, track, and manage pain. (Annals of Long-Term Care: Clinical Care and Aging 2010;18[9]:42-47)
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Why Measure Pain in LTC?
While it is important to recognize that patients in long-term care (LTC) settings experience pain, the systematic application of scales to measure pain raises some problems. Is pain common enough in LTC settings to merit the assessment of pain in all patients? How important is pain as a symptom? Are current methods of assessing pain effective? Even if pain is identified, does treating it result in any symptomatic or behavioral improvements for patients? Is it practical to use a single pain scale for all patients? Answers to these questions will greatly impact decisions about the use of pain scales.
The productive application of symptom scales depends not only on the properties of the scales themselves, but on contextual factors related to the patient population, the symptoms that the scales measure, and the settings in which they are used. For instance, even if a scale can measure a symptom with very high sensitivity and specificity, it may be injudicious to use it generally if the condition is rare, untreatable, or insignificant, or if using the scale is onerous or impractical. This article will address some key issues around the use of scales to measure pain in LTC settings, especially in patients with cognitive impairments.
Excellent recent reviews of pain scales for patients with cognitive impairments exist, with both practical1,2 and systematic3 approaches. We will focus less on the properties of the scales, and more on issues around measuring pain and the application of scales in LTC settings. First, we will highlight the importance of measuring pain in older adults. Second, we will identify some key challenges in the measurement of pain in LTC settings, review existing scales, and scrutinize the most commonly used pain scale in LTC, the pain items from the Minimum Data Set (MDS). Third, we will offer practical suggestions for applying pain scales.
How Common and Important Is Pain?
Regular pain occurs in 40-80% of residents in LTC facilities,4 making it more common than many other chronic conditions and symptoms. Not only does pain entail human suffering, but it has many behavioral, functional, and psychological effects. Patients with pain in LTC settings may show agitation, irritability, and resistance to care, as well as sleep disturbances and decreased socialization.5 Untreated pain may worsen symptoms of dementia.6 Pain is associated with slowed rehabilitation, less participation in exercise programs, 7 and difficulties with eating and drinking. 8 Pain and depression often co-occur,9 and severe pain is a factor in suicidality in older adults.10 In all of these ways, older patients experience more than “just pain,” and efforts to improve pain management would be expected to improve health status and quality of life across various domains.
Are Current Methods of Assessing Pain Adequate?
Despite the innate human ability to recognize pain,11 it is often underrecognized in LTC residents.12 Individuals with increasing cognitive impairments, in particular, are much less likely to have pain identified: 34%, 31%, 24%, and 10% of nursing home (NH) residents with no, mild, moderate, and severe cognitive impairment, respectively, were identified as having pain with quarterly MDS assessments.13 Patients over age 85 years and ethnic minority populations were also less likely to be identified with pain in NHs.14 Although rates of “actual” pain may differ between groups based on cognitive status, age, and race, it is likely that many LTC residents who experience pain are not identified as such using current evaluation methods. Research about quality of care has found that all facilities surveyed, regardless of staffing, did “poorly on all pain-related measures,” identifying only about half of residents found on more thorough assessments to have chronic pain.15
Can Pain Be Treated Effectively in LTC Settings?
There is evidence of overall benefit from managing pain in LTC,16 and recent guidelines from the American Geriatrics Society find high- or moderate-quality evidence for the use of many pharmacologic agents for pain in older adults.17 Guideline-based management of dementia involves assessment and treatment of pain,18 and pain assessment and treatment are key elements in palliative care interventions in NHs.19 In end-of-life care, greater pain control is associated with family satisfaction. 20
Although trials of specific treatments for pain have shown patient-level benefits, there is little evidence-based research about the effect of pain management interventions in NHs.21 However, we do know that there are major deficits in the application of pain treatments in LTC settings. Less than 50% of NH residents in the United States who suffered from chronic pain were adequately addressed and treated.22 Many patients with pain receive no analgesics in LTC settings,23 and only about 10% of those with an as-needed prescription for pain medications were offered it on more than half the days during the last month.24 The deficiencies in effective pain management may be due to underrecognition or to beliefs that pain is intractable, that older people can tolerate pain, or that treatments are dangerous.
Is Measuring Pain in All Patients Practical?
For scales to be used widely, providers must be able to apply them in various settings. MDS 2.0, currently mandated in all Medicare- or Medicaid-certified LTC facilities in the United States, includes three pain-related items.25 Thus, nearly all NH residents have their pain assessed using the MDS 2.0 pain scale four times per year. MDS 2.0 seems reliable to identify the presence or absence of pain.14,24,26 Research about other instruments to assess pain in cognitively impaired older adults has found that they can be applied in community-based care settings, with either professionals or untrained caregivers as evaluators.27 In fact, research has suggested that pain assessment is associated with quality of care for pain in NHs. Higher pain prevalence on the MDS was associated with more pain assessments documented by licensed nurses and physicians, more prescription of pain medication, and more documentation of treatment response in those with pain.24 This evidence indicates that pain scales can be applied broadly throughout LTC settings, and that their broader application may have beneficial consequences.
Key Challenges in Measurement of Pain
There are some important challenges in the measurement of pain that can impact the use of pain scales, both in general and in LTC patients with cognitive impairments or limited ability to communicate.
Subjectivity and Variability of Pain
There is no objective way to measure the degree of someone else’s pain, nor to separate out the experience of pain from pain behaviors. People without cognitive deficits can find it difficult to articulate how much pain they have, and they must often resort to metaphors to communicate it. Relativity is also a challenge. Self-reported pain scales, such as numerical scales for intensity, the FACES scale (caricatures of faces in different degrees of pain), and the pain thermometer, are intended to apply a common framework to amount of pain, but there is no way to ascertain if 8/10 means the same to two different people. Pain is a symptom, and not a diagnosis or a trait, and evaluations at different times may yield very different results. When discussing pain, patients often find it important to qualify the settings and situations in which it occurs, and the factors that worsen or improve it.28 Patient and caregiver responses often disagree about degree of pain.29 Thus, it can be difficult to assign a single label to degree or frequency of pain, especially someone else’s pain.
The Need for Observational Assessment
Verbal report of pain does not suffice among patients who cannot express themselves, and many patients with cognitive impairments cannot describe degree of pain using even simple self-report scales. Reliance on behaviors introduces some specific challenges in measuring pain. Pain is often associated with behavioral disruption, such as “acting out,” poor sleep, or vocalizations, and it can be difficult to distinguish pain from agitation due to other causes. Behaviors during delirium preceding death can resemble those seen with pain.30 Pain may mask more serious medical complications, such as constipation.31 Given the challenge in interpreting pain from behaviors, raters may require training in order to provide reliable measures of pain. Research has found that raters who had more training and experience assigned higher pain scores, which were closer to the patients’ own ratings.32,33 Raters who did not have training generally underestimated pain.34 Thus, the application of observational scales is not a self-evident task, and using them to obtain reliable results may require considerable training of raters.
Recent research about the assessment of pain in nonverbal or cognitively impaired adults has identified five important challenges about observational assessment (Table I).35 First, patients may show either specific pain-related behaviors or more subtle behaviors, both of which can be difficult to correlate with degree of pain. Second, information can come from direct observation of the patient or from the report of surrogates; the former is more likely to ignore subtle changes over time, and the latter to project suffering that may not exist. Third, there is a difference between the presence of pain and the severity of pain, and scales to measure them cannot be compared. Surrogate or proxy reports seem reliable at identifying pain, but not at quantifying its severity; professional caregivers tend to underestimate pain severity, and family members to overestimate it. Fourth, the tools used to measure degree of pain involve a trade-off between false positives and false negatives, and the lack of a gold standard for pain severity hinders the development and evaluation of more sensitive and specific scales. Fifth, screening results do not imply diagnostic certainty, since behavioral pain assessment does not elucidate either the diagnosis of chronic pain, nor its etiology or the most beneficial treatments. In all of these ways, even very reliable and valid observational tools can fail to ensure successful treatments.
The Need for Frequent Assessment
Pain is not a fixed symptom; it can improve or worsen based on health-related, contextual, functional, and psychological factors. Unlike functional and cognitive capacity, which typically remain stable or decline predictably except during periods of acute illness, pain may wax and wane considerably. Even persistent chronic pain recurs intermittently or flares up.36 Musculoskeletal pain, which is the most common cause of pain in older adults, often worsens after periods of activity, but also can worsen with prolonged inactivity or improve with structured activities. Pain treatments are not uniformly effective and often require titration. Some, such as opioid medications, may have risks from prolonged use. For these reasons, pain must be assessed more frequently than every few months. As described above, quality care for pain in NHs is associated with more frequent assessments.24
Pain Assessment Scales
MDS 2.0
MDS 2.0 is now the most commonly used pain scale in LTC settings in the United States. It includes three pain items: (1) the rater’s’ assessment during the last seven days of the frequency that the resident complained or showed evidence of pain (rated as: no pain, pain less than daily, or pain daily); (2) the rater’s assessment of the intensity of this pain (rated as: mild, moderate, or horrible/excruciating); and (3) the location of the pain (back, bone, chest, headache, hip, incisional, joint other than hip, soft tissue, stomach, and other). These items have been found to have high correlation with visual-analog scale (VAS) reports of pain.25 Among patients with no, mild, or moderate cognitive impairments, the MDS pain items show relatively good validity and reliability (their ability to quantify pain consistently in different patient populations),25,26 with less reliability among patients who have severe impairments. Other tools, such as a report of pain from certified nurse assistants, may be more sensitive than the MDS.37
Transition from MDS 2.0 to MDS 3.0
MDS 2.0 will be phased out, and MDS 3.0 is to be implemented in October 2010. MDS 3.0 includes a far more detailed pain assessment (Table II). For all residents, it has three items about pain treatments during the last five days (scheduled pain medication, as-needed pain medication, and nonmedication intervention). It then determines whether the resident is able to describe pain reliably; if not, an observational assessment is conducted. The self-report measures of pain asks about the presence of pain, the frequency of pain, the effects of pain on functioning, and pain intensity. The new questions in MDS 3.0 address some of the challenges described above about measuring pain, in particular the distinction between self-report and observation, and the difference between pain frequency, intensity, and functional consequences. Because the broad administration of MDS 3.0 will not occur until late 2010, its performance as an assessment tool has not yet been examined, nor have the differences between versions 2.0 and 3.0 been explored in detail. In the next several years, research will ascertain how using a more detailed pain assessment scale impacts recognition, prevalence estimates, and quality of pain management in LTC settings.
Observational Scales
More than two dozen scales to evaluate pain in patients with limited capacity to communicate have been developed (see the review in Aubin et al38 and While and Jocelyn2). Despite differences in length and method of administration, these scales all address similar domains: facial expressions, verbalizations, body movements, changes in interpersonal behavior, changes in activity, and mental status changes. Several studies have examined scale properties and how different evaluators use different scales,3,32 but, in general, there have not been any substantive differences identified between them. In fact, many of these measures have not been evaluated for internal consistency, and there is some question about what constructs they are evaluating.39 As such, and without any compelling evidence to use one scale instead of another, the MDS 3.0 nonverbal scale (J0800; Table II) presents a straightforward means to determine a resident’s degree of pain that is consistent with most approaches to assessing pain using observation.
Self-Report Scales
For patients who can articulate their degree of pain, numerous scales exist to quantify the degree and quality of pain.40 There is not, to our knowledge, any comprehensive review about existing self-report pain scales in LTC settings. An expert consensus statement about assessing pain in older adults lists 16 recommendations, including accommodating any sensory deficits, providing clear instructions, and using the same tool consistently.39 This consensus statement suggests that instead of attempting to use a single pain assessment instrument, institutions should have several options available, using both numeric rating scales and verbal descriptor scales. Other research has indicated that verbal descriptors (in which the resident is asked about how much pain she or he has experienced) may have better consistency and reliability than analog scales (placing pain on an ordinal scale) or face-recognition scales (caricatures showing different degrees of pain).27 Visual scales may be unreliable in patients who still retain insight about pain and can express degree of pain verbally but who have visual agnosia.27 As with scales for patients with cognitive impairments, the MDS 3.0 items around self-report address the key domains of pain assessment, and they do not substantially differ from most of the existing self-report scales, such as the Short Form of the McGill Pain Questionnaire.39
Suggestions for Improving Measurement and Management of Pain
There is little empirical evidence about the consequences of more frequent or detailed assessment of pain in LTC settings or about the benefits of using particular scales rather than others. The effects of the new pain assessment tools in MDS 3.0 remain to be seen. In light of the challenges and conceptual issues discussed, we believe that the following principles can help clinicians, policymakers, and researchers to improve the assessment and management of pain in LTC, and can help to guide the selection of scales that best fit different practice settings.
Make Pain Assessment a Part of the Culture in LTC
Because half or more of older adults in LTC report pain, because it is underreported using current approaches, and because it can be treated, pain clearly merits attention. Yet, structured scales to measure pain are only tools, and do not ensure that pain will be treated appropriately. There have been efforts to make pain a central symptom, a “fifth vital sign.” Some qualitative work indicates the utility of such an approach,41 although other work has found that the “fifth vital sign” framework does not improve management of pain.42 Even without specific evidence-based outcomes, there may be an ethical mandate for asking about and trying to improve pain for LTC residents.43 This culture change is quite different than requiring that staff routinely complete a pain scale such as the MDS; rather, it encourages ongoing attention to pain and its consequences, and urges efforts to empower staff of all disciplines in pain assessment and management.
A key issue in changing how LTC settings approach pain is in recognizing the disparities that may impair recognition and treatment of pain. As discussed above, patients from minority ethnic groups and of older age are less likely to have pain identified and aggressively managed.44 Improving the cultural competencies of NH staff may improve this, as might using interpreters and allotting enough time for assessment when cultural barriers exist. Increasing recognition of the potential for pain in nonverbal patients can help to address underrecognition. Research has found that pain medications may not be available in many nonwhite neighborhoods,45 which might impose a specific barrier to effective pain management in some groups.
Train Raters, and Do Not Limit Pain Assessment to a Single Discipline
Efforts to measure pain and treatment response depend on reliable assessment. The ability to categorize a level of pain that is reliable and commensurate with the patient’s self-report depends on some degree of specific training, but not any particular disciplinary background or use of any particular scale. Therefore, investment in staff training would be anticipated to yield rewards in more timely and accurate measurement and treatment of pain, especially for observational assessments. As mentioned, the capacity to evaluate pain varies not by discipline or credentials, but rather by level of training in pain assessment.32 Nursing assistants, who conduct many daily assessments, might be designated as responsible agents for pain assessment in LTC settings, which could help to make pain assessment a part of the culture of care.
Apply Structured Methods for Assessing and Treating Pain in Nonverbal Patients
Although it can be very difficult to assess pain in nonverbal patients, using a systematic approach can ensure that their pain is appropriately addressed. The American Society for Pain Management Nursing has described five clear steps that can help clinicians in this process: (1) obtain self-report if at all possible; (2) investigate for possible pathologies that could produce pain; (3) observe for behaviors that may indicate pain; (4) solicit surrogate report; and (5) use analgesics to evaluate whether pain management causes a reduction in the behavioral indicators thought to be related to pain.46 Having such a framework as a part of standard clinical practice, or as a flowsheet for all patients, can help guarantee that pain is not ignored. The MDS 3.0, with its expanded pain items, will help to structure assessment in patients who cannot articulate pain, although it is unclear whether this will result in systematic changes in pain management.
Frequently Reassess Pain, Pain Treatment, and Response
Quarterly assessments of pain and pain treatments, as stipulated in the MDS, are not a sufficient approach to pain management in LTC. Simply measuring pain produces few, if any, effects, as evidenced by the high degree of persistence of pain in the setting of almost global quarterly pain assessment in NHs in the United States.12 Pain scales will have the most utility if they can guide the effective application of treatments. A high pain score demands that providers take some action, and treatments should be undertaken and modified until the patient reports or manifests less pain, improved functioning, or both. The disconnect between pain assessment and pain treatment may explain some of the deficiencies in pain management in LTC.22 Applying pain scales is thus only the first step toward achieving patient-level benefits. Assessing and managing pain using a systematic approach (as in a recent review35) can produce significant benefits with little risk, but it requires vigilance.
Conclusions
Pain is a common, important, and treatable symptom in older adults residing in LTC settings. Observational scales can quantify pain in patients who are nonverbal or who have significant cognitive impairments. MDS 3.0 includes a detailed evaluation of pain for both patients who can articulate pain and those who cannot communicate; it is expected to increase recognition of pain. Yet, the MDS, when used quarterly, neither assesses pain frequently enough for clinical purposes, nor provides direction about how to manage pain. More frequent assessment than in the MDS 3.0 and specific action plans for pain management are needed in order for pain to be identified, tracked, and treated effectively in LTC settings.
The authors report no relevant financial relationships.
Dr. Thielke is at the Department of Psychiatry and Behavioral Sciences, University of Washington, and the Geriatric Research Education and Clinical Center of the Puget Sound VA Medical Center, Seattle, WA; Dr. Sale is at the Mobility Program Clinical Research Unit, Keenan Research Centre in the Li Ka Shing Knowledge Institute, St. Michael’s Hospital, and at the Department of Health Policy, Management and Evaluation, University of Toronto, Ontario, Canada; and Dr. Reid is in the Division of Geriatrics and Gerontology, Weill Cornell Medical College, New York, NY.
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