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Summary Making decisions about people who suffer from chronic pain is one of the most troublesome of the problems faced by public and private insurers who determine eligibility for disability, including the Social Security Administration (SSA). The problem was brought sharply into focus in 198~1981 when SSA's intensified "continuing reviews" of disability cases resulted in the termination of benefits for nearly half of those reviewed. People suffering from chronic pain were believed to be among those removed from the rolls in disproportionate numbers. The 1980~1981 "purging of the rolls" has been followed by years of appeal and litigation from many of those whose allowances were discontinued; more than half who appealed have had their benefits restored. Further, in recent years there has been considerable tension between the SSA system and the federal courts over the subject of chronic pain; claimants who had been denied benefits by the SSA often were later awarded them by the courts to which they appealed. In response to these problems, the 1984 amendments to the Social Security Act included the first statutory standard defining the way in which pain should be evaluated by the SSA in determining eligibility for disability benefits. It further required the Secretary of the Depart- ment of Health and Human Services to appoint the Commission on the Evaluation of Pain. This commission was to work in consultation with the National Academy of Sciences; the Institute of Medicine (IOM) fulfilled this role for the Academy. The commission's life was short and it recommended further study by the lOM. This report is the result of that more detailed study. 1
2 PAIN AND DISABILITY Specifically, the TOM was asked to explore the relation between medical illness and pain as a symptom; the pathways from acute pain to chronic pain and the inability to function; the concept of illness behavior, especially as it relates to people with chronic pain; the ways in which various disability benefit programs deal with symptoms of chronic pain that are not fully accounted for by clinical findings; promising approaches to the assessment and measurement of chronic pain and dysfunction; promising approaches to the rehabilitation of chronic pain patients; and how the SSA benefit structure and admin- istrative processes may affect pain complaints. The TOM was further asked to consider making recommendations for possible improvements in the way the SSA deals with pain in making disability determina- tions, the role that rehabilitation might play in the current disability program in relation to patients with chronic pain, and promising areas of research to develop a better understanding of the nature of chronic pain and its measurement. CHRONIC PAIN Everyone suffers severe pain from time to time; for most of us, each episode ends with the resolution of the symptom or the disorder producing it. A small but significant proportion of individuals treated may get less than optimal relief, have recurrences, and develop chronic pain. What differentiates people who develop chronic pain from those who do not, and those who can function with the pain from those who become disabled by it, is not well understood. At the time of a person's first episode of pain it is usually difficult to predict the course of the condition for a given patient, the likelihood of recovery, the response to specific therapies, or the potential for rehabilitation and a return to a more active role. Despite progress in our understanding of the physiology of pain pathways in the body, very little is known about the mechanisms underlying such common clinical problems as Tow back pain. Even when there is demonstrable degeneration of the spine and compression of a nerve roota condition generally acknowledged to be extremely painfulit is not known what it is about the condition that actually causes pain. Much research and clinical experience with pain have demonstrated that there is no clear relation between the amount of tissue damage and the degree of discomfort or functional disability. The nature of the pain and underlying physiological factors do have an impact on the course from acute pain to chronic pain to functional disability. Yet for
SUMMARY 3 many, and perhaps most, of those who follow this course, psychosocial factors are inextricably intertwined with physiological change and may even be primary. The concept of illness behavior provides a useful framework for understanding and describing the multiple psychosocial influences that affect the ways in which people monitor their bodies, define and interpret their symptoms, come to view themselves as sick and disabled, take remedial action, and seek lay and professional sources of help. A crucial premise in the concept is that illness and the illness experience are shaped by psychological, social, and cultural factors along with the genetic, physiological, or other biological bases of disease; all of these factors interact to influence the development, course, and outcome of illness. Complaints of chronic disabling pain that seem disproportionate to clinical findings may be clarified by the concept of illness behavior. It also helps to explain why some people who have welI-substantiated diagnoses of painful diseases and obvious physical limitations continue their usual routines and push them- seIves beyond what one might expect. Psychological and physical factors are not completely separate in their effects on the maintenance of pain. For example, stress and anxiety increase muscle contraction and would thus be expected to exacerbate any pain problem to which this factor contributes. Con- versely, any treatment that induces relaxation will reduce muscle contraction and perhaps lessen pain. This phenomenon may represent a linkage of the psychosocial and the somatic factors that influence pain tolerance. There is evidence that chronic pain is sometimes associated with mental disorders and substance abuse. The nature of the relation, especially in terms of cause and effect, is often unclear. Just as there is diversity among chronic pain patients in general, so, too, are individ- uals with chronic pain and psychiatric disorders a heterogeneous group. Many patients have affective disorders, particularly depression; others suffer from substance abuse, personality disorders, and various somatoform disorders, such as hypochondriasis and somatization dis- order. In some patients these disorders may be secondary to chronic pain, but in others they predate the pain or reflect alternative expressions of the same underlying psychobiological disorder. What- ever their etiological significance, each of these psychiatric disorders, if untreated, may exacerbate the pain condition, render other treat- ment less effective, and impede recovery. There is no direct, objective way to measure pain. Although it is possible to identify neural activity that ordinarily causes pain, there
4 PA]N AND DISABILI'FY can also be pain without any neural activity; conversely, there can be activity in the primary afferent nociceptors without pain. The aware- ness of pain is a perception and, therefore, subjective. Well-defined instruments for assessing pain and related variables are all based ultimately on self-report, observation, or both. No method can yield unequivocal evidence of the presence of pain apart from the patient's report and behavior. In recent years considerable attention has focused on the assessment of the effects of pain, such as functional limitations. Such measures are not always good proxies for pain severity because the correlation between pain severity and functional impairment is imperfect. On the other hand, functional measures may be more relevant than pain severity if the reason for the assessment is to determine whether a person can work or engage in other activities. Most experienced clinicians tend toward the eclectic; data of various types are used to build a broad picture of the individual patient. Decisions for diagnosis and treatment are based on interpretations of the results of a combination of formal and informal assessment techniques. In their search for relief, chronic pain patients often seek care not only from several different physicians but also from nontraditional healers, and they may undergo numerous treatments over a period of months or years. At some point in their quest for relief, they may be referred to specialized pain management programs, or pain clinics, for rehabilitation. Such programs vary substantially in terms of their staging, treatment orientation, and criteria for accepting patients. There is evidence that some of the effects of chronic pain and attendant disability can be reversed with comprehensive treatment through rehabilitative medical, behavioral, and social management. There is also evidence that some disabled pain patients can be rehabilitated (i.e., returned to normal activity) even when pain relief is not achieved. SOCIAL SECURITY ADMINISTRATION DISABILITY PROGRAMS The SSA administers two disability compensation programs. The Social Security Disability Insurance (SSDI) program is designed to protect those with a recent work history in SSA-covered employment. The disability portion of the Supplemental Security Income (SSI) program is aimed at those without a recent work history; claimants must meet a financial needs test to receive benefits under this program. The programs use the same definition of disability and the same procedures for determining whether or not a person is disabled, as set forth in law and in SSA regulations.
SUMMARY 5 The definition of disability in the Social Security Act is very restrictive in comparison with definitions in other disability compen- sation programs in the United States and abroad. Some programs compensate those who are disabled partially and temporarily, as well as those who are totally and permanently disabled. The SSA definition, however' requires the inability to work at any "substantial gainful activity" because of a medically determinable physical or mental impairment expected to result in death or to last for at least 12 months. Further, such impairments must be demonstrable by medically accept- able clinical and laboratory diagnostic techniques. A complex set of regulations has evolved to implement the statute. The SSA has established a set of medical evaluation criteria referred to as the "listing of impair clients." This listing defines the disorders and level of severity that, in the absence of substantial gainful activity, are presumed to prevent a person from working. The procedures by which SSA decides who is disabled for work are complicated. An individual seeking compensation files a claim for benefits at one of the SSA offices located throughout the country. Information gathered by this office (which usually includes medical records from the cIaimant's personal physician) is forwarded to the disability determination service (DDS) located in each state. A team of examiners decides on the claimant's eligibility based on a review of the records. The claimant must not be working for substantial gain, defined as earning more than $300 a month. The claimed impairment must be considered severe, that is, it must seriously interfere with basic work activities. If the impairment meets the criteria for one of the entries in the listing of impairments, disability is presumed and benefits are awarded; or, if the impairment is found to "equal" one of the listings (i.e., to be equivalent in severity and effect on the ability to work), benefits are awarded. If, however, the impairment does not "meet or equal" the listing of impairments, the claimant is further evaluated for "residual functional capacity," defined as what the claimant is capable of doing despite the impairment. In such a case, to be awarded benefits the claimant must be found incapable of engaging not only in his or her usual work but also in any work that exists in the national economy, taking into account the cIaimant's age, education or training, and previous work experience. Claimants who are denied benefits initially may appeal the decision. A "reconsideration" is carried out by a different team of examiners at the state DDS. Claimants still denied benefits may appeal to an administrative law judge (A[J) employed by the SSA; this is the only time that a claimant is seen in person by a decisionmaker. The next
6 PAIN AND DISABILl'FY recourse is to the Appeals Council of the SSA. Claimants denied benefits at all levels within the SSA system may then appeal to the federal courts. Added to the complexity of the determination process is the sheer volume of activity. It is estimated that more than 1.5 million people file claims each year at the 1,300 local SSA offices. The Social Security Act requires that decisions be made on an individual, case-by-case basis; at the same time, decisions are to be made as consistently and equitably as possible. As a result, resolving a particular claim may take months or years, especially if it is based on a symptom complaint or on an impairment that does not "meet or equal" the listing of impairments; chronic pain falls into both of these categories. Many diagnoses that are adequate to presume disability in the SSA system do include pain as a symptom: for example, various kinds of arthritis, disorders of the spine, and other musculoskeletal disorders. However, pain in the absence of these diagnoses, or pain with few clinical findings of disease progression or anatomical abnormalities, generally leads to the conclusion at the initial level of determination that the individual is ineligible for benefits, although if appeared to higher levels of review and ajudication this decision may be reversed. The SSA estimates that about 150,000 applicants per year (10 percent of the total) have pain as their primary complaint without clinical findings to fully substantiate it. Problems In the System Historically, many forces came together to produce the Social Secur- ity disability programs. These forces continue to operate, some func- tioning to keep the program within the established boundaries and others pushing against these boundaries, such that there is continual tension among the various elements within the program as well as from various external forces interacting with the program. These include tensions between the Congress and the SSA; among physi- cians, claimants, and SSA administrators; between AWs and admin- istrators; and between the federal courts and the SSA. Further difficulties come from the use of medical definitions of disability to dete~-~'ine what is actually a functional issuethe ability to work- and from the dual goals of the disability program~income support for the disabled and rehabilitation. These tensions and inconsistencies are evidence that an appropriate system of checks and balances is operating. The goal should not be to eliminate the tensions but to assure a decision-making process that is
SUMMARY 7 as accurate and fair as possible. Human judgment and subjectivity are inherent in that process and appropriate to determinations that require a combination of so many different kinds of information- medical, psychosocial, functional, and vocational. The very different perspectives of Congress, SSA employees, medical professionals, and judges will necessarily result in differences of opinion. In addition, the political climate and national economy exert a powerful influence on the context within which decisions are made. In the face of political conservatism and a tight economy, for example, Congress and the SSA have a greater stake in keeping people off of the disability rolls. At the same time, when unemployment rates are high, more people apply for disability benefits. Some groups of claimants (including those with mental impairments, chronic pain, and other symptom complaints) are probably more likely to be denied benefits than others in such circum- stances. Balancing the competing goals of the nation with individual needs, while maintaining the program's integrity, is an inherently difficult task. CRITICAL GAPS IN KNOWLEDGE In reviewing data, hearing testimony, and analyzing the published literature, the study committee was struck by some crucial gaps in our knowledge and understanding of chronic pain and its relation to disability: 1. Inconsistencies in definitions and measurement make it difficult to generate reliable estimates about the numbers of people in the population with chronic pain and their associated dysfunction and social disabilities. These are the people at risk for becoming unable to work and applying for SSA benefits. 2. There is a severe lack of data available about the numbers and characteristics of SSA claimants and beneficiaries in the disability program whose primary complaint is pain and how they fare over time. 3. There are no reliable methods for predicting which patients with acute and subacute pain will develop chronic disabling pain. Although many factors are known to cot relate with chronic disabling pain, predictive models have not been developed and tested. Epidemiological studies suggest that fewer than 10 percent of people with acute back pain develop chronic pain. 4. Assumptions about the ability of early treatment and rehabilita- tion to interrupt the course of chronic pain are largely untested. Although there is general agreement that the longer one has had a
8 PAIN AND DISABILI7~ chronic condition, the more difficult it is to achieve rehabilitation, there are few data that attest to the effectiveness of early intervention. 5. There is an imperfect correspondence between severity of pain and dysfunction. People can have severe pain with minimal functional limitations or minimal pain with severe limitations. RECOMMENDATIONS The committee makes six major recommendations: 1. The SSA should develop a better system for routine data collection and information retrieval for its disability programs. This would help the SSA to know more about the numbers, character- istics, and outcomes of claimants and beneficiaries generally, and to know more about pain claimants and other troublesome categories of claimants specifically. In doing so, the SSA should collaborate with other agencies, particularly the National Center for Health Statistics and the Bureau of the Census, on routine and special data collection activities. 2. Neither "chronic pain syndrome" nor "illness behavior" should be added to the regulatory listing of impairments. Although the committee acknowledges the value of these terms in certain contexts, they should not be used for SSA disability purposes. There has been no demonstration of a common etiology, a predictable natural history, a clearly defined constellation of symptoms, or a specific treatment for the various pain conditions that would suggest a basis for positing a single chronic pain syndrome. Similarly, illness behavior is neither a disease nor a diagnosis. The concept is intended to represent the varied behavior of individuals responding to illness or to the belief that they are ill. All individuals exhibit such behaviors in varying ways. The concept and perspectives associated with illness behavior facilitate appropriate inquiry and further understanding but are not intended to describe clinical status. This recommendation does not mean that chronic pain, and chronically painful conditions, should be ignored in the administrative process. On the contrary, the committee believes that pain should be attended to in a more thorough and systematic fashion in the determination of eligibility for disability benefits, as discussed in the next recommendation. 3. Significant pain, even in the absence of clinical findings to account for it, should trigger a functional assessment of the capac- ity to work. Under current SSA procedures, a pain claimant without objective clinical findings to account for the pain is denied benefits
SUMMARY 9 early in the evaluation process. The committee's recommendation is that a primary complaint of pain allow an early assessment of the claimant's functional capacity for work. Disability benefits have never been awarded on the basis of self-reported pain entirely uncorroborat- ed by objective findings, nor should they be. However, the kinds of acceptable evaluation and corroboration should not be limited to medical evidence of an underlying disease process. With or without such findings, consideration should also be given to serious functional limitations and to the erect of pain on the claimant's life. This means not only assessing physical abilities such as sitting, standing, lifting, and walking, but also examining the ways in which pain affects sleeping, eating, relationships with others, the ability to concentrate, and work activities. The SSA's recently revised mental illness listings provide a precedent for this approach. They are based on integrated functional criteria, not simply a diagnosis, by which claimants are evaluated primarily on their ability to function in daily life, including work. An increased emphasis on functional evaluation of claimants early in the evaluation process holds promise for preventing some errors of commission and omission in eligibility determinations, and for avert- ing at least some of the later appeals for higher review and adjudica- tion. 4. SSA should support the design and execution of two major demonstration/evaluation projects. A. Several methods for assessing pain claimants early in the eval- uation process should be developed and compared. The committee suggests that three methods be compared. (1) One or more easily adrnin~stered questionnaires or pain assessment tech- niques should be incorporated into the initial determination in a rigorous experiment to test the reliability, the effects on the ratio of allowances to denials, and the practical constraints of including such instruments in this stage of the review. (2) A sample of claimants should be offered an early face-to-face hearing at the state level. The SSA should evaluate the consequences of such a hearing and deter- mine the extent to which the approach can be standardized and yield consistent decisions. (3) The value of an integrated functional assess- ment for pain claimants early in the determination process should be investigated. Under the current system, such assessments are con- ducted late in the evaluation process, if at all. The committee believes there is potential for using careful descriptions and measures of functional disturbances in performance and activities of living as surrogate variables for the severity of chronic pain conditions.
1O PAIN AND DISABlL17'Y B. The efficacy of early rehabilitation interventions with chronic pain patients should be assessed. Under the current system, the need to "prove and re-prove" one's disability is so great that it can undermine the cIaimant's subsequent motivation for rehabilitation. The requirements for proving work disability and the requirements for acceptance into rehabilitation must be disentangled if rehabilitation is to become a realistic goal within SSA. Although SSA disability programs do include features intended to provide incentives for rehabilitation (e.g., a trial work period with continuation of disability and medical benefits), such opportunities are seldom used. Further, by the time claimants apply for SSA disability benefits, chron~city is well established and func- tional impairments are severe. Early identification and rehabilitation hold promise for preventing long-term disability, and ultimately reducing the number of claimants and beneficiaries. The possible value of early and active rehabilitation for pain patients should be thoroughly explored. The committee recommends that the SSA support a demonstration/evaluation project to identify pain patients before they apply for disability benefits and to offer them a package of multidisciplinary rehabilitation, time-limited cash bene- fits, and medical benefits. For both ethical and practical reasons, however, the committee does not recommend mandatory rehabilitation requirements for SSA pain claimants or beneficiaries. 5. The Secretary of the Department of Health and Human Ser- vices (HHS) should take the lead in ensuring that a broad research initiative on pain and disability is undertaken within HHS and in cooperation with other federal agencies as appropriate. This should include at least one major longitudinal epidemiological study to identify the determinants of chronic disabling pain; clinical studies of the efficacy of commonly used treatment methods (i.e., medication, physical therapy, and surgical interventions) and the optimal timing of interventions to prevent chronic disabling pain; methodological studies to develop and validate measures of clinical phenomena, psychosocial variables, and pertinent outcomes relevant to chronic pain and disability; and health services research to elucidate the contributions of important sociocultural variables to the course of illness and illness behavior, and to study the interactions of the health care delivery system and disability programs with patient/claimant behavior. 6. The training of health care professionals should foster a comprehensive and multidisciplinary approach to patients with pain. This should include attention to important psychological, social,
SUMMARY 1 1 and cultural contributions to the development of chronicity and asso- ciated illness behavior. Such an orientation is likely to improve the diagnosis, treatment, and rehabilitation of chronic pain patients and prevent or lessen Tong-term negative outcomes. On the basis of the available evidence, the committee believes that health care providers are not adequately trained to manage patients with pain. The committee makes two recommendations in this area. The first is that a cadre of physicians be trained in aspects of each of the medical specialties most relevant to pain. The resulting group of experts would be capable of performing multidisciplinary assessment and treatment and of training primary care providers who deal with chronic pain patients. The second recommendation is that organiza- tions and boards who review postgraduate training programs for primary care providers (family physicians, internists, pediatricians, gynecologists, nurse practitioners, etc.) should examine their accredi- tation processes to assure that these programs attend to a number of educational goals. Primary care providers should, for example: (1) appreciate the complexity of chronic pain, associated illness behavior, and psychosocial and cultural influences on pain; (2) be aware of commonly overlooked physical and psychiatric disorders that may account for the pain or contribute to it; (3) be able to make appropriate referrals of chronic pain patients to practitioners in other disciplines; and (4) understand the potential for an inadvertent negative impact of health care providers on the course of chronic pain problems and disability. Chronic pain, especially musculoskeletal pain, is a common health problem afflicting a substantial proportion of the adult population and interfering with every aspect of their lives. The course of chronic pain and disability is inextricably intertwined with social, psychological, economic, and cultural factors. As a clinical problem, chronic pain is often elusive and intractable. As a public policy problem, determining whether claimants whose pain and dysfunction are not accounted for by objective clinical findings are disabled for work is difficult to do in an efficient, fair, and reliable manner. Pain is inherently subjective; there are no thoroughly reliable ways to measure it; and the correla- tion between the severity of pain and the level of dysfunction is imperfect.