Barriers to Effective Cancer Pain Management: A Review of the Literature

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1 358 Journal of Pain and Symptom Management Vol. 18 No. 5 November 1999 Review Article Barriers to Effective Cancer Pain Management: A Review of the Literature Kimberly L. Pargeon, MA, and B. Jo Hailey, PhD Department of Psychology, The University of Southern Mississippi, Hattiesburg, Mississippi, USA Abstract As many as 90% of patients with cancer-related pain can attain satisfactory relief through available pharmacological and medical means. However, as many as 45% of patients in the earlier stages of cancer and 75% of patients in the advanced stages experience at least some pain. Although published guidelines are available, the research literature suggests that health care providers continue to hold some negative misconceptions about cancer pain and its treatment. Patients also harbor similar misconceptions that contribute to ineffective management. Interventions have been discussed in the literature, and although some have proven successful, much still needs to be done to remedy this problem. This review outlines the published guidelines for cancer pain management and describes the literature related to provider and patient barriers, as well as some interventions designed to facilitate effective cancer pain management. J Pain Symptom Manage 1999;18: U.S Cancer Pain Relief Committee, Key Words Cancer, pain, pain measurement, palliative care Introduction Every year, approximately one million Americans are diagnosed with cancer, and approximately eight million Americans have a history of cancer. 1 On average, 30 45% of patients in the early and intermediate stages of cancer experience moderate to severe pain, and as many as 75% of those patients in the advanced stages of cancer experience pain; 25 30% of these patients experience severe pain. 1 Despite the fact that as many as 90% of patients with cancer pain can be effectively treated through present pharmacological therapies, 1 cancer patients Address reprint requests to: B. Jo Hailey, PhD, Department of Psychology, Box 9371, The University of Southern Mississippi, Hattiesburg, Mississippi 39406, USA. Accepted for publication: February 4, still continue to experience pain, including patients who are terminally ill. Despite the availability of guidelines for health care professionals published by a number of national and international organizations, including the U.S. Agency for Health Care Policy and Research (AHCPR) 1 and the World Health Organization (WHO), 2 many physicians, nurses, and other medical personnel lack knowledge in some key areas of effective pain management and hold many misconceptions about the effects of available drug treatments. In addition to these barriers to effective management, the literature suggests that patients often hamper their own treatment due to similar misconceptions about opioids and other drugs, nonadherence to treatment regimens, and poor communication of concerns about pain to medical personnel. Although a number of interventions have been attempted in the literature, some of U.S. Cancer Pain Relief Committee, /99/$ see front matter Published by Elsevier, New York, New York PII S (99)

2 Vol. 18 No. 5 November 1999 Barriers to Effective Cancer Pain Management 359 which have been successful, much still needs to be done to deal with this national and international problem. This review describes some of the guidelines published through such organizations as the WHO and the National Cancer Institute, then examines provider and patient barriers to effective cancer pain management. Some interventions that might improve the current situation are discussed. Although not exhaustive, research studies were selected for inclusion in this review based on their relevancy to the topic. The vast majority of the studies were published within the last decade. Guidelines for Effective Pain Management Practice guidelines for effective cancer pain management for medical professionals are available through several organizations, most notably the AHCPR and the WHO. The AH- CPR document is entitled the Management of Cancer Pain: Adults, Quick Reference Guide. 1 It details assessment procedures; suggestions for pharmacological management of pain, including types of medications, routes of administration, potential side effects, and adjuvant drugs; physical and psychological interventions; and more invasive procedures for pain management. The AHCPR guideline advocates a team approach to combating cancer pain that includes not only physicians, but also patients, their families, and other health care professionals. The first step is adequate pain assessment. Assessment requires input from both the patient and the physician, and should be conducted at regular intervals once treatment has been initiated. In addition, assessment should be conducted each time the patient reports a new pain, and at appropriate points after pharmacological or nonpharmacological interventions have been altered or initiated. The initial assessment includes several important components, including a detailed history, a thorough physical examination, a psychosocial assessment, and a diagnostic evaluation. One of the most crucial sources of information during the assessment process comes from patient reports. Health care professionals should help patients describe the characteristics of their pain, including the type, location, intensity or severity, factors that seem to aggravate or alleviate pain, and patients goals for pain management. The physical examination is necessary to ascertain the etiology and pathophysiology of pain, and to clarify the relationship between the pain and the disease. Psychosocial functioning, a component of quality of life, should be evaluated initially and also used to assess the outcomes of treatment. When assessing the efficacy of treatment, it should be determined whether pain decreased in intensity and severity and whether improvements were found in psychosocial functioning. Rating scales of pain intensity and measurements of the percentage of pain relief can both be particularly helpful for outcome assessments. Pharmacological management of cancer pain is generally effective, works quickly, entails little risk, and is inexpensive. 1 The AHCPR guideline recapitulates the WHO Three-Step Analgesic Ladder approach, 2 recommending the primary use of analgesics for cancer pain. Drugs are selected depending on the severity of pain experienced by the patient. The least invasive and simplest dosage schedules should be employed first. According to the first step of the WHO ladder, if the patient is experiencing mild to moderate pain, a nonopioid, such as aspirin, acetaminophen, or a nonsteroidal antiinflammatory drug (NSAID), should be used, unless contraindicated. If the pain is not responsive or if it increases in severity, the second step of the WHO ladder suggests adding an opioid. If pain continues to increase in intensity, the third step of the WHO ladder suggests using a single-entity, high-efficacy opioid. During all steps, other adjuvant drugs can be used to enhance the analgesic effects or to treat other symptoms. In order to maintain therapeutic levels of drugs, doses should be scheduled regularly, and additional doses can be given when needed to combat breakthrough pain. Patients at later stages of cancer or who are experiencing more intense pain may begin at the second or third step of the WHO ladder. According to these guidelines, opioids are the drugs of choice for the management of moderate to severe pain. They are effective, have manageable risks and are easily titrated. One result of long-term opioid therapy is physical dependence and tolerance, which are of-

3 360 Pargeon and Hailey Vol. 18 No. 5 November 1999 ten confused by both health care providers and patients with psychological dependence, or addiction. Fears of addiction can lead to ineffective use of opioids both by medical personnel and patients, thus leading to the undertreatment of cancer pain. Clinicians also fear side effects, such as respiratory depression, and may be reluctant to give high doses of opioids for this reason, even in terminally ill patients. The development of tolerance to serious side effects during long-term opioid therapy renders concerns about such side effects unfounded. In addition, full agonist opioids do not have a ceiling dose. Unfortunately, some physicians believe there is a maximum dosage for opioids, and consequently, prescribe a dosage that is therapeutically too low. The guideline discusses a number of side effects, most of which can be easily treated. The most common side effect of patients receiving long-term opioid therapy is constipation, which should be anticipated by the clinician. This problem can generally be alleviated by giving the patient a laxative. Nausea and vomiting can usually be treated by using an anti-emetic, and sedation and mental clouding can sometimes be managed by adjusting doses or coadministering a psychostimulant drug. Another potential side effect, respiratory depression, is exceedingly rare because patients quickly develop tolerance to the respiratory depressant effects of opioids. Other side effects, including subacute overdose, dry mouth, and sleep disturbances, are also mentioned in the guideline. The guideline also describes adjuvant drugs that may be useful in enhancing the analgesic effects of treatment, in treating other symptoms, and in addressing specific types of pain. Included in this list are corticosteroids, anticonvulsants, antidepressants, and others. Various noninvasive interventions may be used in conjunction with drug therapies. These techniques can allow patients to more actively participate in their care. Physical medicine approaches, such as the application of heat or cold, massage, exercise, and repositioning, may also be helpful in alleviating muscle pain. Transcutaneous electrical nerve stimulation and acupuncture are also suggested. Cognitive behavioral and other psychological interventions may also be helpful in conjunction with drug treatment. These interventions can not only improve the patient s quality of life, but can also enable patients to gain a sense of control and improve their coping skills. It is suggested that these techniques be introduced early in the disease course, so patients can learn and practice these techniques while they still have the energy to do so. Some of the techniques suggested include relaxation and imagery techniques, hypnosis, patient education, psychotherapy, support groups and religious counseling, and cognitive reframing. The guidelines also describe the use of radiation therapy, surgery, and other invasive techniques that can be used for pain management. Radiation therapy and surgery can achieve local tumor control and may be appropriate for focal pains. Invasive analgesic approaches, such as neurolytic blocks and intraspinal infusional therapies, may be considered when patients do not adequately respond to more conservative measures. Barriers to Effective Pain Management Despite the availability of guidelines and educational information detailing the necessary attributes of effective cancer pain management, patients continue to experience pain associated with cancer. A great deal of research attention has been focused on the barriers that lead to the undertreatment of cancer pain, including factors related to both health care professionals and patients themselves. The literature suggests that inadequate management of pain is a function of a number of factors, including misconceptions about the use of drugs commonly employed to deal with cancer pain, a lack of communication between patients and providers about pain, and the absence of formal assessment procedures. Health Care Providers Physicians and nurses often create barriers to effective pain management (Table 1). There Table 1 Provider Barriers Misconceptions about medications and side effects 3,4,5,9 Insufficient knowledge/training in pain management 3,4,5,7 9,11,12,14 Lack of formal assessment procedures for pain 8,16,17

4 Vol. 18 No. 5 November 1999 Barriers to Effective Cancer Pain Management 361 is debate, however, as to whether the problems are a result of insufficient knowledge about proper management procedures, inadequate application of recommended procedures, or a combination of the two. Many studies have focused on the attitudes and knowledge of health care professionals, and some studies have examined the specific levels of knowledge of nurses and physicians of different subspecialties. In addition, some studies have specifically focused on common misconceptions that may lead to the undermanagement of cancer pain. A number of common misconceptions expressed by health care professionals center around the use of morphine, which is one the most commonly used drugs to treat cancer pain. Eliott and Elliott 3 surveyed 243 physicians involved in the treatment of cancer patients in Duluth, Minnesota to determine the prevalence of 12 misconceptions associated with morphine use in the treatment of cancer pain. Approximately half of the physicians surveyed had some misconceptions about drug tolerance, believing that an increased need for morphine was indicative of tolerance, as opposed to increased pain intensity. Over 20% of the doctors surveyed believed that addiction was a concern with the use of morphine for cancer pain management, although fewer oncologists expressed this misconception. In addition, many physicians indicated that parenteral administration is the only route available when treating severe cancer pain, even though alternative routes of administration are available and suggested. Some physicians misunderstood such side effects as mental clouding and respiratory depression, both in their treatment and prevalence. One of the most concerning findings was that almost 20% of physicians believed that pain associated with cancer is inevitable and cannot be fully alleviated through treatment. Other studies have yielded comparable findings. Another study by Elliott et al. 4 surveyed 145 physicians in Minnesota to determine the extent of knowledge deficits in cancer pain management and attitudes that may pose barriers to effective treatment. Physicians displayed significant knowledge deficits in nine out of the 14 areas surveyed. The nine areas were represented by the following statements: tolerance of opioids is rarely a problem; risk of addiction is low in cancer patients; tolerance to side effects of opioids generally occurs; pain associated with cancer is not inevitable; opioid doses are related to the level of pain, not to drug tolerance; opioid doses are related to the intensity of pain, not to the severity of disease; addiction is not the same as physical dependence; the oral route of administration is effective; and antidepressants are effective as analgesic adjuvant drugs. The only two attitudinal problems identified related to inappropriate concerns regarding the side effects of opioids and the effectiveness of nonpharmacological treatments. Similar studies have been conducted in other countries, including Canada, Denmark, and France. 5 7 One such study conducted in Sweden by Rawal et al. 8 surveyed nurses and physicians to determine their knowledge of pain management in terminally ill cancer patients, whose expected life span was 2 weeks. Although the results indicate that the majority of physicians employ the WHO ladder, prefer to use the oral route of drug administration, dose opioids on an around-the-clock basis, and do not restrict the doses when prescribing opioids, approximately 30% of the physicians surveyed believe that all cancer patients are experiencing moderate to severe pain at the time of their death. In addition, approximately 80% of the doctors and nurses believed that some severe pain is common in patients who are terminally ill. The results further indicate that physicians do not generally employ any specific assessment procedures to measure pain intensity, and they do not separately evaluate different types of pain, even though these could reflect different etiologies. Despite the fact that constipation is a common and expected side effect of drug treatment for pain, 1 few physicians indicated that they prescribed prophylactic laxatives. Over half the physicians and nurses surveyed reported that they had some knowledge deficits in the areas of pain evaluation and treatment. Another study compared the attitudes of nurses and physicians towards cancer pain management. Fife and colleagues 9 surveyed 500 physicians and 471 nurses in Indiana to assess their knowledge of and attitudes towards cancer pain and its treatment. Although the majority of physicians and nurses believe pain management in cancer patients is a problem and that cancer pain can be alleviated through treatment, more nurses (84%) than physicians

5 362 Pargeon and Hailey Vol. 18 No. 5 November 1999 (73%) saw cancer pain as a significant problem. More nurses reported that most cancer patients suffer pain, whereas more physicians indicated that pain associated with cancer can be treated. The majority of physicians (76%) and nurses (67%) believed that patients with cancer are undermedicated. It is interesting to note that approximately 25% of the respondents in each group expressed concerns regarding addiction of analgesics used to treat cancer pain. The majority of physicians and nurses believed that patient requests for increased doses of analgesics were a result of drug tolerance, as opposed to disease progression or increased pain. Eighty-four percent of physicians and 94% of nurses believed that the patient was the best source of information for assessing pain intensity. Although the majority of physicians (64%) and nurses (59%) indicated that the use of the maximum dose of an analgesic is appropriate when needed, 36% of physicians and 41% of nurses reported that analgesic use should be limited based on the patient s prognosis. A number of researchers have called for increased efforts to educate medical professionals on the subject of cancer pain management. 10,11 Consequently, a few studies have focused on the level of knowledge in physicians completing their medical training. For instance, Oneschuk et al. 5 assessed knowledge regarding palliative care issues in second-year residents in Canada. Physician knowledge was assessed by using two comparable 16-item examinations, one given before a 2-week rotation on an acute palliative care unit and one given after the completion of the rotation. The exams tapped six areas of palliative care, including pain assessment, use of opioids, and adjuvant medications. Although scores did improve between the pre- and post-test examinations, knowledge deficits were still found in several areas, especially in the domains of pain assessment and opioid use, more specifically side effects and issues pertaining to tolerance and addiction involving opioids. Several studies have also attempted to evaluate physician behaviors. A common method for examining physician behaviors is through hypothetical case scenarios that ask physicians to suggest an appropriate treatment for the case described, including types of medications, dosages, routes of administration, and adjuvant medications. Von Roenn and colleagues 12 conducted a survey of 897 physicians through the Eastern Cooperative Oncology Group (ECOG) to assess physician estimates of the prevalence of pain in cancer patients, their perceptions of the adequacy of available methods for pain management, and their reports of their own methods for dealing with cancer pain. A series of questions was used to assess the first two areas of interest, and physician responses to a hypothetical case scenario were used to assess the latter. Approximately 86% of the physicians surveyed believed that most cancer patients who experience pain are undermedicated. Sixty-seven percent of the physicians believed that at least 50% of the cancer patients seen in their own practices experienced pain at some point during the course of their illness, and physicians estimated that approximately 48% of those patients had been experiencing pain for more than 1 month. The case scenario presented to the physicians described a 40-year-old man with severe back pain of greater than 1 month duration due to bone metastases. His prognosis was greater than 24 months, and he was opioid naïve. Physicians were asked to suggest drugs for treatment, dosages, and routes of administration. In response to this case scenario, 93% indicated that they would prescribe an opioid. Fifty-one percent stated that they would prescribe a weak opioid, despite the fact that the case scenario describes a patient with moderate to severe pain. Three studies performed in Norway, France, and Denmark, respectively, assessed physician knowledge and behaviors by using the same three hypothetical case scenarios, which describe a woman with breast cancer, a man with terminal melanoma, and a man with rectal cancer. In Norway, Warncke et al. 11 surveyed 306 physicians who treat cancer patients. Surprisingly, only 25% of physicians were familiar with the principles of pain management outlined by the WHO ladder. Although 86% were willing to prescribe a strong opioid to manage cancer pain, 44% prescribed analgesic doses that were considered to be too small. The vast majority (97%) of physicians in this study expressed problems with cancer pain management, ranging from difficulties with managing opioid side

6 Vol. 18 No. 5 November 1999 Barriers to Effective Cancer Pain Management 363 effects to inadequate pain relief. In addition, most physicians believed their education in the area of cancer pain management was inadequate. Vainio 7 conducted a comparable survey of 2669 physicians in France. The majority of physicians expressed familiarity with the WHO analgesic ladder and 44% indicated that they used these guidelines in their clinical practice. However, in response to a question asking how physicians typically treat their own patients, the researcher could only identify the principles of the WHO ladder in 7% of the answers provided by general practitioners and 13% of those provided by specialists. For the three case scenarios, only 10 to 21% of the responses were considered adequate to sufficiently treat the pain described for each hypothetical patient. In fact, only 3% of the treatment suggestions given by general practitioners and 7% of those given by specialists for the patient in the second scenario, who was in the terminal stage of cancer and was experiencing excruciating pain, were judged to be adequate. Finally, Sjögren et al. 6 surveyed the knowledge and practice of 577 physicians in Denmark. The vast majority (97%) of these physicians reported at least some difficulties associated with cancer pain management, with most of these problems associated with side effects of drug therapy and insufficient pain relief. In response to the three scenarios, most of the physicians were able to supply adequate suggestions for the treatment of pain associated with bone metastases and visceral pain, although treatment of neuropathic pain was less satisfactory. It is interesting to note that younger physicians performed better than older physicians in their responses to the first two case scenarios, although there was no difference in their performance on the third. In general, the physicians in this sample seemed to be more willing to use opioids (97%) and at higher doses (92% reported a willingness to use more than 60 mg). Although these studies did not evaluate whether physician responses to these scenarios were translatable into actual practice, the results do raise some interesting points as to the effectiveness of employing only educational procedures to increase physician awareness of acceptable management of cancer pain. 13 Even if physicians have an acceptable level of knowledge about recommended guidelines for effective pain management, they may not necessarily use this knowledge in practice. These studies have highlighted a number of barriers associated with medical professionals, specifically physicians, that may hamper the effective treatment of cancer pain. First, the quality of education of physicians and nurses on issues of pain management may be a limiting factor. Physicians often rated their perception of their quality of education on such issues as fair to poor, with only a small fraction rating their education as good or very good. 10,11 Another issue is that there may be important knowledge differences among cancer specialists, family practitioners, and other types of providers. 3,7 9,14 In general, oncologists seem to be more aware of the recommended guidelines to manage cancer pain, although at least one study indicated that their behaviors may not be as optimal as their knowledge. 13 Unfortunately, these studies often include a relatively small number of oncologists, as compared to family practitioners. Nonetheless, if family practitioners are less knowledgeable and their behaviors are even less optimal than oncologists, patients who rely on family practitioners to treat cancer pain may be even more undermedicated. Some studies indicate that physicians seldom use a standardized assessment procedure to characterize the pain. Although formal assessment is recommended for effective pain management, 1 it requires time that may not be available. Although there are short forms of standardized pain assessment measures, one study 15 indicated that a short form of one, the Brief Pain Inventory, may be too short to be clinically useful and the long form may be too time-consuming for clinical practice. Although the patient is the best source of information for the treatment of pain, 1 physicians often use clinical judgment in the interest of time. One study 16 assessed the amount of agreement between patient and provider reports of patient symptoms on a palliative care unit. Patients and providers agreed more on the absence, rather than the presence, of symptoms. Although the concordance between providers and patients on their ratings of patient pain was relatively high (70.7%), pain was underestimated in 17.6% of the cases by the pro-

7 364 Pargeon and Hailey Vol. 18 No. 5 November 1999 viders. Cleeland et al. 17 found that the amount of disagreement between patient reports of the severity of pain and physician perceptions of patient pain was predictive of the undertreatment of cancer pain. Patients and their Families The effective management of cancer pain is hampered not only by the erroneous beliefs and practices of health care providers but also by the very same problems in patients and their caregivers (Table 2). In the practice guidelines published by the U.S. Department of Health and Human Services discussed previously, several patient-related barriers to pain management are mentioned. 1 These include the reluctance of patients to report pain to their provider and their reluctance to take certain pain medications. Patients may not report pain for a variety of reasons, including concerns that they may be bothering the doctor or that they are not being a good patient because they feel as though they are questioning his or her recommendations. In addition, patients may fear that their pain is indicative of disease progression and do not want to face that possibility. Patients may be reluctant to take pain medications because they may fear becoming addicted or tolerant. They may also be concerned about side effects. If physicians and nurses do not give patients permission and opportunities to discuss issues related to pain, patients may continue to suffer unnecessarily. Ward et al. 18 surveyed 270 cancer patients to assess their concerns regarding the use of pain medications and the reporting of pain to their health care providers. Patients were given a 27- item self-report measure called the Barriers Questionnaire (BQ), and were also given the Brief Pain Inventory (BPI) to measure pain intensity. The BQ included eight specific concerns about pain management, such as concerns regarding addiction to pain medication, concerns regarding side effects, and concerns Table 2 Patient/Primary Caregiver Barriers Concerns about addiction to pain medication Concerns about side effects of medication 18,19,21 Poor communication with health care providers; wanting to be good patient 19,21 Misconceptions about inevitability of pain related to being a good patient by not complaining about pain to providers. Between 37% and 85% of the patients surveyed expressed some concerns over issues related to pain management, with concerns about addiction to medications receiving the highest mean score. In addition, 45% of patients agreed that a good patient should not complain or talk about pain with providers. Patients who were older, had lower incomes, and had less education tended to have more concerns about pain management issues. Based on patient reports of their use of pain medications and the severity of their pain over the week prior to participation in the study, patients who were deemed undermedicated had more concerns than those who were considered adequately medicated. Riddell and Fitch 19 assessed knowledge and attitudes related to cancer pain management in 42 cancer patients in Canada. Patients completed a modified version of the Patient Pain Questionnaire, which contained 14 items. This measure assessed patient attitudes, knowledge, and experiences related to the management of cancer pain. Patients in this study were able to identify a number of pharmacological and nonpharmacological treatments used in cancer pain management, thus demonstrating some knowledge of factors related to effective treatment. Patients also identified several barriers to effective pain management, including fears regarding addiction to medications, fears that medications are bad for their bodies, and progression of disease. Nearly 25% of patients believed that pain medications were bad for their bodies, and as a result, they may be reluctant to take pain medications regularly or in sufficient doses for adequate pain relief. Family members and caregivers of cancer patients can also pose significant barriers to effective pain management, especially if the patient is no longer able to personally tend to his or her needs. Elliott et al. 20 investigated the relationship between patient and family member reports of cancer-related pain experienced by patients, using the Brief Pain Inventory. In addition, knowledge and attitudes regarding cancer pain were assessed for both groups. Although there was a significant relationship between patient and family member reports of patient pain, family member reports of pain and disability were significantly higher than those given by the patient. In addition, family

8 Vol. 18 No. 5 November 1999 Barriers to Effective Cancer Pain Management 365 member reports were significantly related to their knowledge and attitudes regarding cancer pain and its treatment. For instance, family members who were not concerned about addiction to medications, who understood that there is no ceiling dose for opioids, who believed that effective cancer pain management is possible, and who believed that nonpharmacological treatments could help to alleviate pain, reported less cancer-related pain in their patients than those family members who did not hold such beliefs. It is not clear, however, whether the reports of these family members who had sufficient knowledge were consistent with reports given by patients. In addition, family members who expected pain to be associated with cancer tended to report more pain. Berry and Ward 21 evaluated barriers to cancer pain management associated with primary caregivers of hospice patients, using the Barriers Questionnaire (BQ). This scale requires respondents to signify their agreement with statements using a Likert scale, ranging from 0 (do not agree at all) to 5 (agree very much). Thirtyseven primary caregivers participated, and between 62 and 100% of these caregivers indicated at least some agreement (as indicated by a score of one or higher) with some of these issues that are considered barriers to reporting and treating pain. Between 3 and 43% of caregivers reported that they had strong agreement (as indicated by a 4 or higher) with these issues. Of the eight subscales for the BQ, the highest means were concerns over side effects of opioids, fear of addiction, concerns that increased pain was associated with disease progression, and fear of injections. Sixty-two percent of caregivers expressed at least some agreement for the subscales related to good patients do not complain about pain to their physicians, patients reporting their pain to physicians may distract physicians from dealing with patients illnesses, and cancer pain is inevitable and cannot be alleviated through treatment, although less than 10% of caregivers strongly agreed with these concerns. As was the case with the study of patients by Ward et al. 18 caregivers who were less educated had higher overall scores on the BQ, and caregivers who were older and less educated were more likely to endorse the belief that reporting pain may distract the physician from treating or curing the patient s cancer. Interventions Interventions aimed at increasing the effectiveness of cancer pain management have targeted a number of the barriers mentioned throughout this review. Some have attempted to raise the awareness of health care providers by educating them on the recommended guidelines for the treatment of cancer pain. Others have attempted to educate patients and their family members in an attempt to make them more active participants in the management of pain. One of the largest provider education programs for cancer pain was organized through the Wisconsin Cancer Pain Initiative (WCPI). The WCPI was formed in 1986 and was designed to develop programs aimed at improving cancer pain management. 22 One such program, the Cancer Pain Role Model Program, was initiated in This program is provided for physicians and their clinical partners, such as the physician s office nurse or nurse practitioner, and it provides them with basic information related to cancer pain. In addition, it allows them the opportunity to discuss and dispel any inappropriate attitudes about cancer pain management in a small group, and further encourages participants to become involved in cancer pain education activities as role models. A group of 22 physicians and their clinical partners participated in the first training conference in October Participants were asked to complete action plans; a number of these plans have been initiated since the conference. 22 Weissman and colleagues 23 indicated that of the 44 physicians and 55 clinical partners who attended both training conferences in 1990 and 1991, 199 activities were listed by these professionals on their action plans. Surveys following these conferences indicated that 212 projects have been initiated, and have been aimed at educating professionals, research, improving clinical care, or development of resources. In another follow-up article, Weissman and Dahl 24 indicated that 196 physicians and nurse educators and their clinical partners participated in one of three role model conferences from 1992 to Within 1 year after the conference, 64% of the action plan goals devised at these conferences had been partially or fully completed. In addition, 227 projects aimed at improving edu-

9 366 Pargeon and Hailey Vol. 18 No. 5 November 1999 cation or clinical practice had been completed. Although the effectiveness of these programs in reducing the prevalence of cancer pain was not addressed, the implementation of programs related to the promotion of effective cancer pain management is a step in the right direction. Trowbridge et al. 25 asked 320 cancer outpatients to complete questionnaires regarding their pain, pain treatment regimens, and the degree of relief they received through their treatment. These areas were assessed again by mail 4 weeks later. Summaries of the pain scales for those patients who were assigned to the experimental group were placed in their charts, and their oncologists were asked to review the summaries. Summaries were not provided for patients in the control group. For the control group, physicians did not change their prescriptions of pain medications for 86% of their patients. For the experimental group, 25% of the prescriptions for patients changed, with 20% of them increasing. A significant decrease in patient reports of the incidence of pain was found for the experimental group. Bookbinder et al. 26 assessed a pain management program (PMP) designed to implement the cancer pain management standards of the American Pain Society. This program was designed to improve the knowledge and skills of medical professionals, improve patient satisfaction with pain management, and identify areas requiring improvement. Responses were obtained from 1210 nurses and 698 patients. The PMP provided structure for adequately assessing pain and education for providers related to basic knowledge and skills associated with pain management. The results indicated that there were significant improvements in the knowledge and attitudes of nurses and patient satisfaction ratings. In addition, there were reductions in nurses perceptions of barriers to effective pain management. At least one study has looked at the longterm effects of provider education interventions. In this study, 27 a role model program was employed in Texas, using similar principles as those employed by the WCPI. Fifty health care providers, including physicians, nurses, and pharmacists, participated in a one-day workshop related to principles of cancer pain management. Knowledge and attitudes were assessed prior to the workshop, immediately following, and 4 and 12 months after the workshop. Both knowledge and attitudes related to cancer pain management improved at the 12- month follow-up periods as compared to scores obtained at the post-workshop evaluation and the 4-month follow-up evaluation. Participants scores improved by 24% for knowledge, 28% for attitudes, and 26% for their overall scores. In addition, over 4500 health care providers had been informed about issues related to cancer pain management by the participants in the program within a year after the workshop. Several studies have attempted to educate patients to improve cancer pain management. Rimer et al. 28 educated patients about cancer pain issues by using printed materials and through counseling with a nurse. After 1 month, patients who received education were more likely to have taken their pain medication on the appropriate schedule and in the appropriate dose. In addition, patients in the experimental group were less likely to have stopped taking their medications when they felt symptoms had abated, and were less concerned about tolerance and addiction to their pain medications. De Wit et al. 29 also educated patients about issues related to cancer pain and its management, using a Patient Education Program. In order to enhance patient knowledge, a 30- to 60-minute tutorial session with a nurse was given to patients. The session was tailored to individual patients based on their treatment needs and their knowledge deficits. Patients were also given an audio tape of the session, as well a pain brochure, so that they could review the information at home. In addition, patients were instructed on how to keep a pain diary, how to better communicate with their health care providers about pain, and how to reach their providers when necessary. Patients who received the Patient Education Program showed an increase in knowledge related to pain management and a significant decrease in the intensity of their pain. Despite the findings of long-term effects of education found by Janjan et al. 27 one study in Finland 30 found that prescriptions of opioids for the treatment of cancer pain decreased from 1991 to 1994, despite efforts to educate providers about effective cancer pain treatment. However, in general, interventions aimed at educating providers and patients tend to be effective. These findings provide some hope

10 Vol. 18 No. 5 November 1999 Barriers to Effective Cancer Pain Management 367 that effective cancer pain management can be achieved through education. Unfortunately, programs such as the ones described previously are not being used in many treatment settings. In addition, these educational programs require time and staffing that may not be economically feasible in all locations. Conclusions Cancer pain can generally be treated through available means, although many patients continue to suffer needlessly. Recommendations and guidelines for effective cancer pain treatment are widely available, yet providers and patients continue to hold misconceptions about the use and effects of drugs commonly used to treat cancer pain. Although interventions designed to raise the awareness of providers and patients appear to help in controlled research studies, much still needs to be done to address this problem. References 1. Jacox A, Carr DB, Payne R, et al. Management of cancer pain: adults. Clinical practice guideline no. 9. (no ). Rockville, MD.: U.S. Department of Health and Human Services, Public Health Service, World Health Organization technical report series. Cancer pain relief and palliative care (804). Geneva: WHO, Elliott TE, Elliott BA. Physician attitudes and beliefs about use of morphine for cancer pain. J Pain Symptom Manage 1992;7: Elliott TE, Murray DM, Elliott BA, Braun B, Oken MM, Johnson KM, Post-White J, Lichtblau L. Physician knowledge and attitudes about cancer pain management: a survey from the Minnesota Cancer Pain Project. J Pain Symptom Manage 1995; 10: Oneschuk D, Fainsinger R, Hanson J, Bruera E. Assessment and knowledge in palliative care in second year family medicine residents. J Pain Symptom Manage 1997;14: Sjogren P, Banning A, Jensen N, Jensen M, Klee M, Vainio A. Management of cancer pain in Denmark: a nationwide questionnaire survey. Pain 1996; 64: Vainio A. Treatment of terminal cancer pain in France: a questionnaire study. Pain 1995;62: Rawal N, Hylander J, Arner S. Management of terminal cancer pain in Sweden: a nationwide survey. Pain 1993;54: Fife BL, Irick N, Painter JD. A comparative study of the attitudes of physicians and nurses toward the management of cancer pain. J Pain Symptom Manage 1993;8: MacDonald N, Findlay HP, Bruera E, Dudgeon D, Kramer J. A Canadian survey of issues in cancer pain management. J Pain Symptom Manage 1997; 14: Warncke T, Breivik H, Vainio A. Treatment of cancer pain in Norway: a questionnaire study. Pain 1994;57: Von Roenn JH, Cleeland CS, Gonin R, Hatfield AK, Pandya KJ. Physician attitudes and practice in cancer pain management: a survey from the Eastern Cooperative Oncology Group. Ann Intern Med 1993;119: Levin ML, Berry JI, Leiter J. Management of pain in terminally ill patients: physician reports of knowledge, attitudes, and behavior. J Pain Symptom Manage 1998;15: Larue F, Colleau SM, Fontaine A, Brasseur L. Oncologists and primary care physicians attitudes towards pain control and morphine prescribing in France. Cancer 1995;76: Twycross R, Harcourt J, Bergl S. A survey of pain in patients with advanced cancer. J Pain Symptom Manage 1996;12: Brunelli C, Costantini M, Di Giulio P, Gallucci M, Fusco F, Miccinesi G, Paci E, Peruselli C, Morino P, Piazza M, Tamburini M, Toscani F. Quality-of-life evaluation: when do terminal cancer patients and health-care providers agree? J Pain Symptom Manage 1998;15: Cleeland CS, Gonin R, Hatfield AK, Edmonson JH, Blum RH, Stewart JA, Pandya KJ. Pain and its treatment in outpatients with metastatic cancer. N Engl J Med 1994;330: Ward SE, Goldberg N, Miller-McCauley V, Mueller C, Nolan A, Pawlik-Plank D, Robbins A, Stormoen D, Weissman DE. Patient-related barriers to management of cancer pain. Pain 1993;52: Riddell A, Fitch MI. Patients knowledge of and attitudes toward the management of cancer pain. Oncol Nurs 1997;24: Elliott BA, Elliott TE, Murray DM, Braun BL, Johnson KM. Patients and family members: the role of knowledge and attitudes in cancer pain. J Pain Symptom Manage 1996;12: Berry PE, Ward SE. Barriers to pain management in hospice: a study of family caregivers. Hospice J 1995;10: Weissman DE, Gutmann M, Dahl JL. Physician cancer pain education: a report from the Wisconsin Cancer Pain Initiative. J Pain Symptom Manage 1991;6: Weissman DE, Dahl JL, Beasley JW. The Cancer Pain Role Model Program of the Wisconsin Cancer Pain Initiative. J Pain Symptom Manage 1993;8:29 35.

11 368 Pargeon and Hailey Vol. 18 No. 5 November Weissman DE, Dahl JL. Update on the Cancer Pain Role Model education program. J Pain Symptom Manage 1995;10: Trowbridge R, Dugan W, Jay SJ, Littrell D, Casebeer LL, Edgerton S, Anderson J, O Toole JB. Determining the effectiveness of a clinical-practice intervention in improving the control of pain in outpatients with cancer. Acad Med 1997;72: Bookbinder M, Coyle N, Kiss M, Goldstein ML, Holritz K, Thaler H, Gianella A, Derby S, Brown M, Racolin A, Ho MN, Portenoy RK. Implementing national standards for cancer pain management: program model and evaluation. J Pain Symptom Manage 1996;12: Janjan NA, Martin CG, Payne R, Dahl JL, Weissman DE, Hill CS. Teaching cancer pain management: durability of educational effects of a role model program. Cancer 1996;77: Rimer B, Levy MH, Keintz MK, Fox L, Engstrom PF, MacElwee N. Enhancing cancer pain control regimens through patient education. Patient Educ Couns 1987;10: de Wit R, van Dam F, Zandbelt L, van Buuren A, van der Heijden K, Leenhouts G, Loonstra S. A pain education program for chronic cancer pain patients: follow-up results from a randomized controlled trial. Pain 1997;73: Vuorinen E, Vainio A, Reponen A. Backlash in the treatment of cancer pain: use of opioid analgesics in a Finnish general hospital in 1987, 1991, and J Pain Symptom Manage 1997;14:

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