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1 1 Introduction I have a master’s degree in clinical social work. I have a well- documented illness that explains the cause of my pain. But when my pain flares up and I go to the ER, I’ll put on the hospital gown and lose my social status and my identity. I’ll become a blank slate for the doctors to project their own biases and prejudices onto. That is the worst part of being a pain patient. It strips you of your dignity and self-worth. —A patient with chronic pain2 Approximately 100 million U.S. adults—more than the number affected by heart disease, diabetes, and cancer combined—suffer from common chronic pain conditions (Tsang et al., 2008; see also Appendix C). Everyone is at some risk of acute or chronic pain arising from an illness, an injury, or an array of other factors, but some population groups have a much higher risk of experiencing pain and its disabling effects and receiving inadequate treatment. Pain is a universal experience but unique to each individual. Across the life span, pain—acute and chronic—is one of the most frequent reasons for 1 The quotations throughout this report come from the committee’s survey on pain care, testimony received at public workshops, committee member comments, and published sources, as noted. Survey responses were submitted January 31, 2011 through April 5, 2011. See Appendix B for a description of the survey. 2 Quotation from committee survey. 19
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20 RELIEVING PAIN IN AMERICA physician visits, among the most common reasons for taking medications, and a major cause of work disability. Severe chronic pain affects physical and mental functioning, quality of life, and productivity. It imposes a significant financial burden on affected individuals, as well as their families, their employers, their friends, their communities, and the nation as a whole. The annual economic cost of chronic pain in adults, including health care expenses and lost productivity, is $560-630 billion annually according to a new estimate developed for this study (see Appendix C). STUDY CONTEXT AND CHARGE TO THE COMMITTEE Section 4305 of the 2010 Patient Protection and Affordable Care Act required the Secretary, Department of Health and Human Services (HHS), to enter into an agreement with the Institute of Medicine (IOM) for activities “to increase the recognition of pain as a significant public health problem in the United States.” Accordingly, HHS, through the National Institutes of Health (NIH), requested that the IOM conduct a study to assess the state of the science regarding pain research, care, and education and to make recommendations to advance the field. The charge to the committee is presented in Box 1-1. To conduct this study, the IOM assembled a 19-member committee, which began meeting in November 2010. Reflecting the complexity of the problem at hand, the committee included experts in pain research, pain management, phar- macology, clinical specialties (pediatrics, oncology, infectious disease, neurology, neurosurgery, anesthesiology, pain medicine, dentistry, psychology, and comple - mentary medicine), chronic disease, clinical teaching, epidemiology, ethics, and consumer education, as well as individuals who have suffered personally from chronic pain and could reflect on the perspectives of the many people it affects. STUDY APPROACH AND UNDERLYING PRINCIPLES The challenges to better pain management in the United States are diverse. Some result from inadequate scientific knowledge about diagnosis and treatment and may be resolved by new research. Many of the challenges, however—those related to inadequate training and lack of understanding of the need to address the multiple physical, mental, emotional, and social dimensions of pain; to disparities in care among population groups; and to payment and policy barriers—reflect a failure to apply what is already known. This report makes an important contribution to the field by providing a blueprint for transforming the way pain is understood, assessed, treated, and prevented. It provides recommendations for improving the care of people who experience pain, the training of clinicians who treat them, and the collection of data on pain in the United States, as well as a timetable for implementing mea - sures to better relieve pain in America. The committee also recommends ways
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21 INTRODUCTION BOX 1-1 Committee Charge The Department of Health and Human Services, National Institutes of Health, has requested that the IOM convene the ad hoc committee to address the cur- rent state of the science with respect to pain research, care, and education; and explore approaches to advance the field. Specifically, the committee will • eview and quantify the public health significance of pain, including the ade R quacy of assessment, diagnosis, treatment, and management of acute and chronic pain in the United States. This effort will take a comprehensive view of chronic pain as a biological, biobehavioral, and societal condition. • dentify barriers to appropriate pain care and strategies to reduce such arriers, I b including exploring the importance of individualized approaches to diagnosis and treatment of pain. • dentify demographic groups and special populations, including older adults, I individuals with co-morbidities, and cognitive impairment, that may be dis- parately undertreated for pain, and discuss related research needs, barriers particularly associated with these demographic groups, and opportunities to reduce such barriers. • dentify and discuss what scientific tools and technologies are available, what I strategies can be employed to enhance training of pain researchers, and what interdisciplinary research approaches will be necessary in the short and long term to advance basic, translational, and clinical pain research and improve the assessment, diagnosis, treatment, and management of pain. • iscuss opportunities for public–private partnerships in the support and con- D duct of pain research, care, and education. to help focus research and policy directives on a variety of dimensions of pain. The report does not present a clinical algorithm for the diagnosis and treatment of patients with pain. Rather, it describes the scope of the problem of pain and provides an overview of needs for care, education, and research. The commit - tee strongly believes that an adequate understanding of pain and its effects on people’s lives must take into account the testimony of those who have experi - enced chronic pain. Therefore, it solicited advice and information from people with pain and their advocates both in person and through an active web portal, which received more than 2,000 submissions. The committee’s recommendations are based on scientific evidence, on this wealth of direct testimony, and on the expert judgment of its members (see Appendix A for a discussion of the data sources and methods for this study). Underlying principles that guided the com - mittee in preparing this report and its recommendations are presented in Box 1-2.
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22 RELIEVING PAIN IN AMERICA BOX 1-2 Underlying Principles • moral imperative. Effective pain management is a moral imperative, a A professional responsibility, and the duty of people in the healing professions. • hronic pain can be a disease in itself. Chronic pain has a distinct pathology, C causing changes throughout the nervous system that often worsen over time. It has significant psychological and cognitive correlates and can constitute a serious, separate disease entity. • alue of comprehensive treatment. Pain results from a combination of bio- V logical, psychological, and social factors and often requires comprehensive approaches to prevention and management. • eed for interdisciplinary approaches. Given chronic pain’s diverse effects, N interdisciplinary assessment and treatment may produce the best results for people with the most severe and persistent pain problems. • mportance of prevention. Chronic pain has such severe impacts on all I aspects of the lives of its sufferers that every effort should be made to achieve both primary prevention (e.g., in surgery for a broken hip) and secondary prevention (of the transition from the acute to the chronic state) through early intervention. • ider use of existing knowledge. While there is much more to be learned W about pain and its treatment, even existing knowledge is not always used effectively, and thus substantial numbers of people suffer unnecessarily. • he conundrum of opioids. The committee recognizes the serious problem T of diversion and abuse of opioid drugs, as well as questions about their long- term usefulness. However, the committee believes that when opioids are used as prescribed and appropriately monitored, they can be safe and effective, especially for acute, postoperative, and procedural pain, as well as for patients near the end of life who desire more pain relief. • oles for patients and clinicians. The effectiveness of pain treatments de- R pends greatly on the strength of the clinician–patient relationship; pain treat- ment is never about the clinician’s intervention alone, but about the clinician and patient (and family) working together. • alue of a public health- and community-based approach. Many features V of the problem of pain lend themselves to public health approaches—concern about the large number of people affected, disparities in occurrence and treat- ment, and the goal of prevention cited above. Public health education can help counter the myths, misunderstandings, stereotypes, and stigma that hinder better care. In general, the committee considered the complexities of individual pain conditions and the diseases that cause pain—which vary widely in their presenta- tion, treatment, effects, and outcomes—to be beyond the scope of this study. Nor did the study address the important issue of psychological or existential pain that exacerbates many experiences of pain. A much larger study would be necessary
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23 INTRODUCTION to address these issues. Similarly, a deep examination of the current controversies surrounding opioid abuse and diversion were beyond the committee’s charge. The committee recognizes that as a result, many of the generalizations included in this report will not apply equally well to all pain conditions, although the overall direction and priorities of the report should be broadly useful. The findings and recommendations presented in this report are intended to assist policy makers, federal agencies, state public health officials, health care providers (primary care clinicians and pain specialists), health care organizations, health professions associations, pain researchers, individuals living with pain and their families, the public, and private health funding organizations in addressing the problem of pain. The ultimate goal of this study is to contribute to improved outcomes for individuals who experience pain and their families. This report builds on and reinforces recommendations regarding ways to improve pain care, education, and research—and the research enterprise in general—made by the IOM in past reports, as well as by other entities. As it conducted this study, the committee generally saw little evidence of progress toward these well-articulated goals and extensively documented findings of the past. Examples of such reports include Approaching Death: Improving Care at the End of Life (IOM, 1997); • Ensuring Quality Cancer Care (IOM, 1999); • • Pain and Disability: Clinical, Behavioral, and Public Policy Perspec- tives (IOM, 1987); • A Call to Revolutionize Chronic Pain Care in America: An Opportunity in Health Reform (The Mayday Fund, 2009); New Approaches to Neurological Pain: Planning for the Future (Harvard • Medical School, Massachusetts General Hospital, and University of California, San Francisco, 2008); Pain, Depression, and Fatigue: State-of-the-Science Conference (NIH, • 2002); Chronic Fatigue Syndrome: State-of-the-Science Conference (NIH, 2000); • • The First National Pain Medicine Summit: Final Summary Report (American Medical Association Specialty Section Council, 2010); • Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care (IOM, 2003); • Transforming Clinical Research in the United States: Challenges and Opportunities (IOM, 2010); and • Enhancing the Vitality of the National Institutes of Health: Organiza- tional Change to Meet New Challenges (NRC and IOM, 2003). The committee hopes that this report will have an impact on the important chal- lenge of pain, given its impact on the lives of more than a third of Americans and the economic well-being of the nation.
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24 RELIEVING PAIN IN AMERICA WHAT IS PAIN? It is so much more than just pain intensity. Over time, many [patients] find the effects of living with chronic pain impact their ability to work, engage in recreational and social activities, and for some, [perform] the most basic everyday activities that people just take for granted. Not surpris- ingly, pain begins to chip away at their mood, often leaving them angry, frustrated, anxious, and/or depressed. Our families suffer along with us, and many relationships are forever altered. —An advocate for people with chronic pain3 There is no visible blood test or X ray to show a trauma. I do not look sick. —A person with chronic pain4 Pain is a warning, a signal that something is wrong, whether it is caused by a stove too hot to touch, a broken arm, an attack of angina, or a bout of food poisoning. In its warning role, pain is protective and sometimes even essential for survival. Its aversive quality motivates individuals to do something—to withdraw or flee, to seek help or rest or medical treatment. The reaction to a painful stimu - lus occurs at a deep evolutionary level and is powerfully protective. Without pain, the world would be an impossibly dangerous place. For example, some children with a rare genetic disease are born with the inability to feel pain. At first thought, these children might appear to be fortunate, but they typically have a short life span because they do not realize when they are injured or sick, and they succumb to early arthritis, wounds, and infections that children without this disease avoid. Pain is a complex phenomenon. The unique way each individual perceives pain and its severity, how it evolves, and the effectiveness of treatment depend on a constellation of biological, psychological, and social factors, such as the following: Biological—the extent of an illness or injury and whether the person • has other illnesses, is under stress, or has specific genes or predisposing factors that affect pain tolerance or thresholds; 3 Quotation from committee survey. 4 Quotation from committee survey.
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25 INTRODUCTION Psychological—anxiety, fear, guilt, anger, depression, and thinking the • pain represents something worse than it does and that the person is help- less to manage it (Ochsner et al., 2006); and Social—the response of significant others to the pain—whether support, • criticism, enabling behavior, or withdrawal—the demands of the work environment, access to medical care, culture, and family attitudes and beliefs. The International Association for the Study of Pain (IASP) published its widely accepted definition of pain in 1994, excerpted in Box 1-3. This useful definition has been influential in replacing earlier views that pain is strictly a physical, or biological, problem because it takes into account that emotional and psychosocial reactions to pain are clinically significant. Most chronic diseases involve multiple physical, cognitive, and emotional factors. While chronic pain shares many attributes with other chronic diseases, it also has distinct characteristics. For example, pain, especially chronic pain, can lack reliable “objective” measures, and it has strong cultural, religious, and philo - sophical meanings that affect (and serve as context for) a person’s pain experience. Because all people experience some degree of pain at some time, moreover, they often do not realize how chronic severe pain differs in its character and effects from the relatively mild and easily treated pain with which they are familiar. The IASP definition emphasizes that pain is a subjective experience. Other people cannot detect a person’s pain through their own senses: it cannot be seen, like bleeding; it cannot be felt, like a lump; it cannot be heard, like a heart arrhythmia; it has no taste or odor; and it often is not confirmed by x-ray or more sophisticated imaging procedures. No current clinical tests for pain are analogous to temperature, blood pressure, or cholesterol measurements. Clinical findings that can be seen—a broken bone on an x-ray, for example—do not necessarily correlate well with the severity of pain the patient perceives. People afflicted by pain may find the rough tools of language inadequate to convey the character and BOX 1-3 Definition of Pain An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage. . . . Pain is always subjective. . . . It is unquestionably a sensation in a part or parts of the body, but it is also always unpleasant and therefore also an emotional experience. SOURCE: IASP, 1994.
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26 RELIEVING PAIN IN AMERICA intensity of their experience and its significance to them. This can be a substantial barrier to obtaining adequate treatment (Werner and Malterud, 2003). Figure 1-1 shows the many branching pathways pain can take. On the right side are the pathways for acute pain, one branch of which moves a person to the left side of the figure, which illustrates the erratic course of chronic pain. The figure shows that pain may be treated and controlled at a number of points in a person’s experience, but also that it may persist, loop back on itself, engender related complications, and prompt an ongoing search for relief. Pain sensation, transmission, modulation, and interpretation are functions of the central nervous system, and when abnormalities in this process occur, pain can be a neurologic disease. Increased understanding of the many physiological and psychological changes that occur in people with chronic pain has prompted the IASP and many pain experts to deem that in many cases, chronic pain is a disease in its own right (EFIC, 2001), a position supported by this committee. This profound recasting means that pain requires direct, appropriate treat - ment rather than being sidelined while clinicians attempt to identify some underlying condition that may have caused it. Prompt treatment can derail the progression of pain from the acute to the chronic state. This recasting also means that health professions education programs should include a substantial amount of learning about pain and its diversity, and that people with chronic pain should be recognized by family, employers, health insurers, and others as having a serious disease. It means that people with chronic pain have an important role to play in managing their disease in an informed, productive way. And finally, it means that the research community should pursue pain research with the same vigor expended on other serious and disabling chronic conditions. WHO IS AT RISK? Thirteen years ago I was rear-ended in a car accident. In a split second my whole life changed, and the accident left me handicapped with chronic pain in the neck, shoulders, and head. I was thrown into a world of medical decisions of which I knew nothing and began searching for information about cervical discs, facet joints, myofascial pain, referred pain, conserva - tive and alternative treatments and various medical procedures. . . . — A patient with chronic pain5 5 Quotation from public testimony submitted by the American Pain Society.
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People with Pain Who Engage with People with Pain Outside of the the Health System Health System People with Chronic Pain People who find People who live with alternatives to treat pain chronic pain People with pain and People with pain and People with Acute Pain another diagnosis no other diagnosis People who develop People not treated People treated chronic pain or under-treated and pain for pain controlled People not treated People treated People treated for and pain or under-treated acute pain for pain controlled People who abuse People with pain opioids for specific time People who abuse opioids period People not People not recognized with a treated or under- People who treated for pain legitimate condition continue to People who experience pain become pain free People who People whose People who find People who live develop related pain is alternatives with chronic pain complications progressively to treat pain (e.g., depression) worse FIGURE 1-1 The picture of pain. NOTE: People can move between and among these groupings and can be in more than one group simultaneously. Similar colors represent 27 similar endpoints (e.g., for those within or outside the health system, or for those with chronic or acute pain). Figure 1-1 Broadside
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28 RELIEVING PAIN IN AMERICA Information about the number of people who have acute or chronic pain is far from complete. Nevertheless, as Box 1-4 illustrates, pain is pervasive and costly, and it is associated with common events and conditions, such as surgery, trauma, cancer, arthritis, migraine, and fibromyalgia, that involve large numbers of Americans (Box 1-5). Pain is common in settings such as nursing homes and other long-term care facilities. Furthermore, people who experience acute pain may go on to develop chronic, intractable pain. BOX 1-4 Pain by the Numbers • 00 million—approximate number of U.S. adults with common chronic pain 1 conditions • 560 to 635 billion—conservative estimate of the annual cost of chronic pain $ in America • 99 billion—2008 cost to federal and state governments of medical expendi- $ tures for pain • 0 percent—percentage of women experiencing their first childbirth who rate 6 pain as severe; 18 percent of women who have caesarean deliveries and 10 percent who have vaginal deliveries report persistent pain at 1 year • 0 percent—percentage of patients undergoing surgery who experience post- 8 operative pain; fewer than half report adequate pain relief: — of these, 88 percent report the pain is moderate, severe, or extreme; — 0 to 50 percent of patients with postsurgical pain develop chronic pain, 1 depending on the type of surgery; and — or 2 to 10 percent of these patients, this chronic postoperative pain is severe f • percent—proportion of American women aged 18 to 65 who experience 5 headache 15 or more days per month over the course of 1 year • 0 percent—percentage of patients visiting the emergency department with 6 acute painful conditions who receive analgesics: — median time to receipt of pain medication is 90 minutes, and — 4 percent of emergency department patients are discharged in moderate 7 to severe pain • .1 million—number of annual visits to U.S. emergency departments for acute 2 headache (of 115 million total annual visits) • 2 percent—percentage of U.S. nursing home residents who report pain: 6 — arthritis is the most common painful condition, and — 17 percent have substantial daily pain • 6.4 percent—percentage of Americans who report low back pain lasting at 2 least a day in the last 3 months SOURCES: (Costs) Appendix C; (Childbirth) Melzack, 1993; Kainu et al., 2010; (Surgery) Apfelbaum et al., 2003; Kehlet et al., 2006; (Headache) Scher et al., 1998; (Emergency care) Todd et al., 2007; (Emergency: headache) Edlow et al., 2008; (Nursing homes) Ferrell et al., 1995; Sawyer et al., 2007; (Low back pain) Deyo et al., 2006.
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29 INTRODUCTION BOX 1-5 Selected Pain-Related Conditions Common sources of acute pain • nfectious diseases (e.g., food poisoning with related gastrointestinal i manifestations) • wound infections • untreated dental conditions • burns • trauma (broken bones, lacerations and other wounds) • appendicitis • surgery • medical procedures • childbirth Common sources of chronic pain • migraine and other serious headaches • arthritis and other joint pain • fibromyalgia • endometriosis • irritable bowel syndrome • chronic interstitial cystitis • vulvodynia • trauma or postsurgical pain • low back pain • other musculoskeletal disorders • temporomandibular joint disorder • shingles • sickle cell disease • heart disease (angina) • cancer • stroke • diabetes Taken together, the available data suggest that all Americans have a sig- nificant chance of experiencing serious pain. Subsequent chapters of this report demonstrate that much of this pain and the attendant suffering are unnecessary and could be prevented or better managed. The risk of both acute and chronic pain is affected by many factors, includ - ing age, race, sex, income, education, urban/rural living, and other demographic factors reviewed in Chapter 2. The likelihood of experiencing a transition from acute to chronic pain is likewise influenced by various factors, especially the ade- quacy of acute pain relief. The factors that influence the development of chronic pain can be assessed using a life-cycle approach (see Table 1-1). Some factors
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44 RELIEVING PAIN IN AMERICA (Keefe et al., 2009). Some people who have been told their pain is chronic have difficulty accepting this diagnosis, and their lives become dominated by attempts to become pain free. The search for total pain relief, while understandable, can lead to doctor shopping; fragmented care; and repeated trials of surgeries, medi - cations, or unproven remedies (Roper Starch Worldwide, 1999). The failure of these repeated (and common) pain treatment efforts undoubtedly undermines the sense of control clinicians may be trying to encourage. Emphasis increasingly is being placed on encouraging acceptance of some pain and self-management efforts that can improve function and quality of life even if all pain cannot be eliminated. An approach that emphasizes participation in daily activities despite pain and fosters a willingness to have pain present with- out responding to it may aid in reducing the “distressing and disabling influences of pain” (McCracken et al., 2005, p. 1335). Self-efficacy is a psychological construct related to that of control. Believ - ing that one can perform a task or respond effectively to a situation predicts pain tolerance and improvements in physical and psychological functioning. Research therefore suggests that “a primary aim of CLBP [chronic low back pain] rehabili- tation should be to bring about changes in catastrophic thinking and self-efficacy” (Woby et al., 2005, p. 100). Likewise, greater self-efficacy improves pain, func- , ). self-efficacy func- tional status, and psychological adjustment (Keefe et al., 2004). Researchers posit several explanations for why self-efficacy works to control pain, including that people who expect success are less likely to be stymied when confronting the challenge of pain. The goals of self-management and self-efficacy reinforce the benefits that accrue when people take a role in managing their pain, and treatment should include efforts to help them perform that role effectively. However, clinicians must take into account that people have unique capacities and cannot be held to a single, universal expectation for self-management. From acute to chronic pain, the salience of individual, subjective responses is paramount. THE NEED FOR A CULTURAL TRANSFORMATION For at least two decades, most major medical journals and the lay media have recognized that many patients have needless pain. ——Von Roenn et al., 1993 Barriers to improved pain care exist at multiple levels: at the system level, where changes are needed in reimbursement policy and research emphasis, for example; at the clinician level, where improvements are needed in clinical educa-
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45 INTRODUCTION tion and practice; and at the level of the public and the individual person in pain, where greater awareness is needed of the significance of pain, as is more educa - tion about self-management and appropriate treatment. At all levels, the focus should be on prevention. Overcoming the barriers to improved pain care will, in the committee’s view, require a cultural transformation. This transformation will lead to a greater awareness of the impact of pain on individuals and society, wider support of efforts to understand and prevent pain, a greater commitment to assessing and treating pain effectively, and enhanced recognition of the highly individual ways in which people experience pain and respond to treatment. Overview of Barriers to Improved Pain Care This section provides a brief overview of the barriers to improved pain care. A more detailed discussion is contained in Chapter 3. System-Level Barriers Although there may be much more to learn about pain and its management, scientific knowledge has advanced to the point where much is understood about the biological–cognitive–emotional aspects of pain and quite a bit about ways to treat it. Throughout the health system in general, however, exist barriers to achieving the ideal of comprehensive and interdisciplinary approaches to health care, including pain management (IOM, 2009). Many of these barriers are in - stitutional, educational, organizational, and reimbursement-related. These same structural barriers channel the health system’s attention to procedure-oriented treatments rather than prevention, but preventing pain (for example, acute pain following surgery or dental procedures) and preventing the transition from acute to chronic pain should be top clinical priorities. In the United States, clinical services (and research endeavors) generally are organized along disease-specific lines. Thus there are departments of neurology and neurosurgery, cardiology centers, free-standing surgeries, orthopedic and cancer hospitals, and so on. Acute and chronic pain are features of each of these special- ties; in a sense, however, because pain belongs to everyone, it belongs to no one. The existing clinical (and research) silos prevent cross-fertilization of ideas and best practices. Although academically based pain clinics implement the comprehensive, interdisciplinary approaches to pain assessment and treatment that appear to work best in managing chronic pain, they are few in number and increasingly constrained by a reimbursement system that discourages interdisciplinary practice. Clinician-Level Barriers Clinicians can, in theory, draw on many disciplines in addressing the pain- related needs of individuals and families: physicians of several specialties, nurses,
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46 RELIEVING PAIN IN AMERICA psychologists, rehabilitation specialists (physiatrists, physical therapists, and oc - cupational therapists), clinical pharmacists, and complementary and alternative medicine practitioners (chiropractors, massage therapists, and acupuncturists, for example). Yet while a substantial amount of acute and chronic pain can be re - lieved with proper treatment by a single clinician or the appropriate mix of trained professionals, providers encounter a number of barriers to appropriate pain care: • Well-validated evidence-based guidelines on assessment and treatment have yet to be developed for some pain conditions, or existing guidelines are not followed. • Health care professionals are not well educated in emerging clinical understanding and best practices in pain prevention and treatment. • Should primary care practitioners want to engage other types of clini- cians, including physical therapists, psychologists, or complementary and alternative medicine practitioners, it may not be easy for them to identify which specific practitioners are skilled at treating chronic pain or how they will do so. • A lack of understanding of the importance of pain management exists throughout the system, starting with patients themselves and extending to health care providers, employers, regulators, and third-party payers. • Regulatory and law enforcement policies constrain the appropriate use of opioid drugs. • Restrictions of insurance coverage and payment policies, including those of workers’ compensation plans, constrain the ability to offer potentially effective treatment. • Additional basic and clinical research is needed on the underlying mech- anisms of pain, reliable and valid assessment methods, the develop - ment of new treatments, and the comparative effectiveness of existing treatments. Patient-Level Barriers Adequate pain treatment and follow-up may be thwarted by a mix of un - certain diagnosis and the societal stigma that is applied, consciously or uncon - sciously, to people reporting pain, particularly if they do not respond readily to treatment. Questions and reservations may cloud perceptions of clinicians, family, employers, and others: Is he really in pain? Is she drug seeking? Is he just malingering? Is she just trying to get disability payments? Certainly, there is some number of patients who attempt to “game the system” to obtain drugs or disability payments, but data and studies to back up these suspicions are few. The committee members are not naïve about this possibility, but believe it is far smaller than the likelihood that someone with pain will receive inadequate care. Religious or moral judgments may come into play: Mankind is destined to suffer;
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47 INTRODUCTION giving in to pain is a sign of weakness. Popular culture, too, is full of dismissive memes regarding pain: Suck it up; No pain, no gain. When people perceive a lack of validation or other negative attitudes in their clinicians, they are more likely to be dissatisfied with treatment and change doctors, as is the case with about half of people with noncancer pain. In a survey of more than 2,600 Americans with chronic, severe, noncancer pain conducted in 1998 (Roper Starch Worldwide, 1999), 47 percent reported that they had changed doctors, and the largest subgroup of these respondents (22 percent) had done so three times or more. Among the top reasons cited for changing doctors were “doctor didn’t take pain seriously enough” (29 percent) and “doctor didn’t listen” (22 percent), although the most common reason was “still had too much pain” (42 percent). Changing doctors may help if the next clinician is more skilled or empathetic or has better ideas for treatment, or it may hurt if all the change ac - complishes is to interrupt the continuity of care. Additional patient-level barriers are specific to particular demographic groups disproportionately undertreated for pain, such as children, older adults, women, rural residents, individuals with less education or lower incomes, and people belonging to certain racial and ethnic groups. These issues are discussed in Chapter 2. The Necessary Cultural Transformation Proponents of international efforts to improve pain treatment have said that “the unreasonable failure to treat pain is viewed worldwide as poor medicine, unethical practice, and an abrogation of a fundamental human right” (Brennan et al., 2007, p. 205). The IASP and its European Federation have urged the World Health Organization (WHO) to recognize that “pain relief is integral to the right to the highest attainable level of physical and mental health” (WHO, 2004), paralleling language found in the WHO Constitution. With the passage of the Patient Protection and Affordable Care Act in March 2010, the U.S. health care system may undergo profound changes, although how these changes will evolve over the next decade is highly uncertain. Health care reform or other broad legislative actions may offer new opportunities to prevent and treat pain more effectively. Both clinical leaders and patient advocates must pursue these opportunities and be alert to any evidence that barriers to adequate pain prevention and treatment are increasing. To remediate the mismatch between knowledge of pain care and its applica- tion will require a cultural transformation in the way clinicians and the public view pain and its treatment. Currently, the attitude is often denial and avoidance. Instead, clinicians, family members, employers, and friends inevitably must rely on a person’s ability to express his or her subjective experience of pain and learn to trust that expression, and the medical system must give these expressions cre - dence and endeavor to respond to them honestly and effectively.
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48 RELIEVING PAIN IN AMERICA Conclusion. Chronic pain alone affects the lives of approximately 100 million Americans, making its control of enormous value to individuals and society. To reduce the impact of pain and the resultant suffering will require a transformation in how pain is perceived and judged both by people with pain and by the health care providers who help care for them. The overarching goal of this transformation should be gaining a better understanding of pain of all types and improving efforts to pre- vent, assess, and treat pain. • nderstanding the experience and impact of pain: U —Pain is a major problem for individuals, families, and society, with an increasing prevalence, cost, and impact on quality of life and health status. —The experience of both acute and chronic pain is unique and varies widely among individuals. Pain is influenced by genetics, early life experiences, mood and psychological state, coexisting medical conditions, and environments. —National surveys and numerous research studies have shown that pain is more prevalent and less likely to be adequately treated in certain population groups, including the elderly, women, chil - dren, and racial and ethnic minorities. —While pain sometimes can serve as a warning sign that protects individuals from further harm, chronic pain is harmful and im- pairs productivity and quality of life. —When acute pain persists and becomes chronic, it may in some cases become a disease in its own right, resulting in dysfunction in the central nervous system and requiring a comprehensive treatment approach. • Improving the assessment and treatment of pain: —Ongoing pain has been underreported, underdiagnosed, and undertreated in nearly all health care settings. —Individuals with pain that reduces quality of life should be en - couraged to seek help. —Because there are multiple contributors to and broad effects of chronic pain, comprehensive assessment and treatment are likely to produce the best results. Finding 1-1. To achieve vital improvements in the assessment and treatment of pain will require a cultural transformation. The committee finds that, to ade- quately address the impact and experience of pain in the United States, govern - ment agencies, private foundations, health care providers, educators, professional associations, pain advocacy groups and organizations that raise public awareness, and payers must take the lead in achieving a cultural transformation with respect
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49 INTRODUCTION to pain. This transformation should improve efforts to prevent, assess, treat, and better understand pain of all types. The recommendations presented in this report are intended to help achieve this transformation. ORGANIZATION OF THE REPORT Chapters 2 through 5 describe the public health challenge of pain, the prac - tice and educational barriers to prevention and treatment, and issues for further research. In each chapter, the committee offers its findings and recommendations. The public health challenge is discussed in Chapter 2, which establishes the rationale for considering pain as a public health problem. This chapter describes the magnitude of pain’s impact on Americans, including the population as a whole and, where data are available, high-risk subgroups. Chapter 3 provides an overview of treatments; describes the major treat- ment modalities; addresses several issues in pain care practice, including aspects of opioid use; elaborates on selected barriers to effective pain care; and presents pain care models. Chapter 4 examines the need for improvements in education about chronic pain and its treatment for patients and families, the public, and clinicians. Chapter 5 defines the challenges in pain research, from basic biomedical and pharmacologic research to the development of new research tools. The current organizational structure and funding for pain research are reviewed, and oppor- tunities for public–private partnerships are described. Finally, Chapter 6 organizes the recommendations presented in Chapters 2 through 5 into a blueprint for action to address the tremendous burden of pain in America. REFERENCES American Medical Association Specialty Section Council. 2010. The First National Pain Medicine Summit: Final Summary Report. Pain Medicine 11(10):1447-1468. Apfelbaum, J. L., C. Chen, S. S. Mehta, and T. J. Gan. 2003. Postoperative pain experience: Results from a national survey suggest postoperative pain continues to be undermanaged. Anesthesia & Analgesia 97(2):534-540. Apkarian, A. V., Y. Sosa, S. Sonty, R. M. Levy, R. N. Harden, and T. B. Parrish. 2004. Chronic back pain is associated with decreased prefrontal and thalamic gray matter density. Journal of Neuro- science 24(46):10410-10415. Aronowitz, R. 2010. The art of medicine: Decision making and fear in the midst of life. Lancet 375(9724):1430-1431. Bair, M. J., J. Wu, T. M. Damush, J. M. Sutherland, and K. Kroenke. 2008. Association of depres - sion and anxiety alone and in combination with chronic musculoskeletal pain in primary care patients. Psychosomataic Medicine 70(8):890-897. Balderson, B. H. K., E. H. B. Lin, and M. Von Korff. 2004. The management of pain-related fear in primary care. In Understanding and treating fear of pain, edited by G. J. Asmundson, J. W. S. Vlaeyen, and G. Crombez. Oxford, England: Oxford University Press. Pp. 267-292.
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