Sickle Cell-Related Pain: Perceptions of Medical Practitioners

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1 168 Journal of Pain and Symptom Management Vol. 14 No. 3 September 1997 Original Article Sickle Cell-Related Pain: Perceptions of Medical Practitioners Barbara S. Shapiro, MD, Lennette J. Benjamin, MD, Richard Payne, MD, and George Heidrich, RN, MA Department of Pediatrics (B.S.S.), University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania; Comprehensive Sickle Cell Center (L.J.B.), Montefiore Medical Center, University Hospital for the Albert Einstein College of Medicine, Bronx, New York; Section of Pain and Symptom Management (R.P.), Department of Neuro-Oncology, MD Anderson Cancer Centeg, Houston, Texas; and Global Pharma Services (G.H.), Madison, Wisconsin, USA Abstract Pain is the most common problem encountered by patients with sickle cell disease (SCD). We report the results of a survey sent to hematologists and emergency department (ED) physicians regarding their perceptions and practices concerning pain and its management. Hematologists and ED physicians differed considerably in their perceptions about the natural history of the pain, and about the percentage of patients who are addicted to analgesics. Fifty-three percent of the ED physicians and 23 % of the hematologists thought that more than 20% of patients are addicted. These beliefs and perceptions about SCD-related pain and the prevalence of addiction must be addressed if clinical care is to be changed substantively. J Pain Symptom Manage 1997;14: U.S. Cancer Pain Relief Committee, Key Words Sickle cell disease, pain, crisis, painful episodes, beliefs, perceptions Introduction Pain from vaso-occlusive episodes is the most common problem experienced by patients with sickle cell disease (SCD). 1-~ Despite the fact that pain is the most common reason for emergency department (ED) and hospital admission for patients with SCD, clinical studies of assessment and treatment are sparse, 4 and patients and health-care professionals often lament that treatment is inadequate and does not follow accepted principles of pain management. Address reprint requests to: Barbara S. Shapiro, MD, 987 Old Eagle School Road, Suite 719, Wayne, PA Accepted for publication: November 25, Patients with SCD-related pain receive care within a complicated and extensive sociocultural system shaped by the beliefs and attitudes of the patient, the family, the community, and the health-care professionals, as well as by manifest and latent beliefs of the larger health-care system and of society. In other pain problems, such as cancer-related and postoperative pain, attitudes and beliefs about pain and deficits in knowledge impair competent and humane management. ~'6 By extrapolation, one can infer that such is the case for SCD-related pain. To our knowledge, however, no studies of health-care professionals' perceptions and practices regarding SCD-related pain have been published. U.S. Cancer Pain Relief Committee, /97/$17.00 Published by Elsevier, New York, New York PII S (97)

2 Vol. 14 No. 3 September 1997 Sickle Cell-Related Pain 169 We distributed surveys to hematologists and ED physicians throughout the United States. The survey was designed as a brief and general assessment, with the goals of (a) providing a sketch of prevailing beliefs, perceptions, and practices; (b) eliciting concerns; and (c) defining areas for further study or intervention. In this paper, we relate the results of this survey, and discuss its implications. Methods The Survey The survey was anonymous and was mailed with pre-addressed and stamped envelopes. We instructed the physicians that responses should reflect their perceptions of their actual current practice, and not their definition of ideal practice. Additionally, we specifically asked for perceptions about patient visits, hospitalizations, and clinical percentages, and not for actual data from medical and hospital records. The questions included (1) the number of patients treated; (2) the percentages of patients visiting at various frequencies; (3) the percentages of patients with mild, moderate, and severe pain treated at the facility; (4) the percentages of mild, moderate, and severe painful episodes managed at home; (5) the percentage of patients visiting the ED or outpatient facility subsequently admitted for pain management; (6) the length of the average painful episode; (7) the approximate length of stay for patients admitted to the hospital; (8) the medical specialties involved with pain management; (9) the specialty primarily responsible for a pain service for respondents indicating involvement of a pain service; (10) pharmacologic management in the ED; (11) inpatient pharmacologic management; (12) pharmacologic management at home; (13) percentage of patients perceived as addicted to opioids; (14) the efficacy of pain management; (15) the existence of a protocol for pain management; (16) concerns about pain management; (17) the existence of a specialized care facility; and (18) demographic information. Population Questionnaires were mailed to all hematologists listed with the National Association for Sickle Cell Disease (N= 201), and directors of emergency services in teaching hospitals with sizable African-American populations throughout the nation (N = 139). Analysis of Data Data were entered and analyzed using the SAS system (SAS Institute, Cary, NC). ED physicians' and hematologists' responses were analyzed separately, and the responses compared using a series of Chi-square analysis and Fisher exact test. Resu/ts Of the 340 questionnaires mailed, 115 were received, giving a response rate of 34%. Hematologists and ED physicians did not differ in the percentage responding. Results were compared by geographic regions (eastern, southern, central, and western); location was not related to the percentage of respondents nor to responses to any of the questions. Respondent Characteristics The majority of respondents treated less than 100 patients each year; about 22% treated more than 300 patients each year. M1 sizes and types of facilities were represented. Perceived Characteristics of the Patients and the Pain Respondents indicated that between 18% and 25% of patients with sickle cell disease visited their facility at least once each month. The perceived percentage of patients admitted for pain management varied widely (Figure 1), with hematologists and ED physicians differing significantly in each percentage category (P = 0.02). In general, ED physicians thought fewer patients seen in the ED were admitted for pain management. Most patients (75%) with mild pain were seen as managing their pain entirely at home, whereas only 20% with moderate pain and 5% with severe pain were thought to manage pain at home. The majority (52%) of inpatient stays were reported as 1-4 days, with very few (4%) more than 7 days. The majority of respondents thought that the average painful episode lasted 3-4 days. Physician Specialties Involved Seventy-four percent and 71% of ED physicians and hematologists, respectively, were

3 Shapiro et al. VoL 14 No. 3 September 1997 Percentage of respondents % % 33% 23% l... 20% 16.5% ~... ~ % %. 80- I O0 Fig. 1. Perceived percentage of patients admitted to the hospital after admission to the emergency department for pain management. Responses of emergency department physicians are depicted by the solid bars; responses of hematologists are depicted by the gray bars. involved in pain management. About 60% cited internists and pediatricians. Apmn service was involved for 26% of the respondents. On average, four specialties were involved in pain management [standard deviation (SD) = 2]. Pharmacologic Management The most commonly cited medications for home management were combined preparations containing codeine or oxycodone (65% and 46%, respectively). Forty-two percent reported prescribing nonsteroidal antiinflammatory drugs, and 22% reported using acetaminophen. Of the opioids, 19% used morphine, 16% used hydromorphone, and 5% used meperidine. In the ED, 48% reported that opioids were administered by the intravenous route, 35% by the intramuscular route, and 9% by the subcutaneous route. Meperidine was the drug of choice for the majority of ED physicians (62%), with 20% using morphine and 5% hydromorphone. For inpatients, 66% of hematologists administered opioids around the clock. Forty-seven percent utilized patient-controlled analgesia for opioid administration. Perceptions of Addiction Hematologists and ED physicians differed significantly in their perceptions of the rate of addiction in both children and adults, with ED physicians citing a higher prevalences (for adults, P ; for children, P = 0.002). In adults, the responses varied widely (Figure 2). About 9% of hematologists and 22% of ED physicians thought that more than 50% of the adults were addicted. For children and adolescents, the perceived frequency of addiction was less than for adults (Figure 3), with the majority of clinicians believing that less than 10% of children are addicted. Forty-six percent of ED physicians and 4% of hematologists thought that more than 10% of the children and adolescents were addicted. Protocols, Efficacy, and Concerns Thirty-five percent of the hematologists and 17% of the ED physicians followed a protocol for pain management. Sixty-five percent of clinicians rated their pain management as moderately effective. There was no relationship between the perceived efficacy of treatment

4 VoL 14 No. 3 September 1997 Sickle Cell-Related Pain 171 Percentage of respondents 70 % % N ~:y 20% Fig. 2. Percentage of adults perceived as addicted. Responses of emergency department physicians are depicted by the solid bars; responses of hematologists are depicted by the gray bars. and the existence of a protocol. The concerns about pain management are listed in Table 1. D~SCUSS~On The questionnaire assessed perceptions only, and not reality, and the results must be interpreted within this framework. However, perceptions of reality, rather than the "objective" reality, reflect clinical behavior. We discuss here the implications of the reported perceptions for the management of pain. Involvement of Emergency Department Physicians Emergency department physicians care for most patients with SCD requiring pain management within the health-care system. If there is no specialized care facility for the management of painful episodes, the ED also provides the interface between home-based outpatient management and hospital-based inpatient management. As such, the attitudes and beliefs of ED physicians are crucial in determining the quality of care offered to patients with painful episodes. Emergency department physicians and hematologists differed in certain attitudes and beliefs, such as the natural history of painful episodes. Emergency department physicians view painful episodes as shorter, on average, than the hematologists. Because they see patients only at the time of acute presentation, and generally do not provide follow-up, they may not have the opportunity to understand the evolution of pain. This has clinical implications. For example, if the duration of the average painful episode is longer than that perceived by the physician, patients may be discharged from the ED with an inadequate supply of analgesics. This, in turn, could result in more frequent returns to the ED, with a subsequent perception on the part of physicians that patients are returning because of drug-seeking behavior rather than pain. Similarly, the perception by ED physicians of a high prevalence of addiction, especially in adults, may produce consequences that further reinforce the belief. If patients are perceived as addicted, undertreatment of pain with inadequate doses of opioids is likely. The inadequate treatment of pain will in turn leave patients the alternatives of either suffering or asking for more medication, complaining about their treatment, and perhaps visiting a number of EDs (that is, pseudoaddiction). 7'8 These behaviors are reasonable and to be expected when pain is not adequately assuaged. When viewed with an underlying

5 172 Shapiro et al. Vol. 14 No. 3 September 1997 I O Percentage of respondents 95% /o m N I N 22% 9% 9% K~ ~ 2% ~ 2% ~ 2.5% 2.5% ~ ~ ~ ~ ~ ~ i i i I O0 Fig. 3. Percentage of children perceived as addicted. Responses of emergency department physicians are depicted by the solid bars; responses of hematologists are depicted by the gray bars. suspicion of substance abuse, however, the behaviors can be interpreted as proof of the underlying perception. Emergency department physicians may be forgotten when educational programs and interventions are planned, as they are involved on a transient and intermittent rather than a continuing and long-term basis. From the patient's point of view, however, the cumulative role of the ED physician looms large. Plans for improvements in the management of SCD-related pain must include this group of physicians. Table 1 Concerns of Emergency Department Physicians and Hematologists in Order of Citation Hematologists 1. Lack of consistency/protocol 2. Lack of money/education/facilities 3. Incorrect use of medication 4. Attitude of staff 5. Misdiagnosis of substance abuse 6. Lack of doctor/patient experience 7. Drug abuse 8. Side effects Emergency Department Physicians 1. Incorrect use of medication 2. Drug abuse 3. Attitude of staff 4. Lack of consistency/protocol 5. Lack of patient satisfaction Involvement of Pain Services An increasing number of hospitals have developed pain services, and pain management specialists are becoming involved in the care of patients with sickle cell-related pain. This trend is strongest in tertiary care institutions. Because of the nature and size of tertiary care hospitals, multiple caretakers are involved in the care of patients with chronic illnesses. Pain management specialists provide state-of-the-art knowledge about acute and chronic pain management. However, potential problems deserve discussion. The addition of pain specialists adds to the number of people involved in the care of each patient. Patients may hear multiple and differing messages, and care that is already confusing and unpredictable may become even more so. We need models of multidisciplinary collaboration that facilitate communication, coordination, and continuity of care. Additionally, most pain management specialists are familiar with postoperative and cancer-related pain, but have little knowledge of sickle cell-related pain within the context of this lifelong chronic illness. Pain specialists must talk with the patients and with hematologists so that they can understand the illness and the pain. The unique issues associated with this pain syn-

6 Vol. 14 No. 3 September 1997 Sickle Cell-Related Pain 173 drome affect the management of the acute episode. 4 Pharmacologic Management of Pain Although meperidine is still the most widely used drug for parenteral management, a sizable number of practitioners are using morphine and hydromorphone. Additionally, many practitioners administer opioids by the intravenous rather than the intramuscular route. Presumably, the practitioners using morphine or hydromorphone via the intravenous route do so because of the risks of normeperidine toxicity and concerns about painful administration, local fibrosis, and sterile abscesses. The use of these medications and the intravenous route may represent changes in practice over the past decade. However, the reported medications, routes, and schedules of administration are far from the approaches recommended in the literature for the treatment of sickle cell-related pain, and for other acute and chronic disease-related pain. 4'9-al Patient-controlled analgesia (PCA) is used by 43% of hematologists. This is a change of practice that is not yet well described in the literature Although the few reports in the literature indicate that PCA appears to be safe and effective, further research is necessary in this pain syndrome. We did not include a questions about placebos, and no respondents referred to the use of placebo medication. However, many clinicians report placebo use as a problem in the care of patients with SCD. Clearly, this practice is deceptive and harmful to patient welfare, and is contraindicated in pain management. Protocols Many facilities have protocols for pain management. Protocols can help ensure consistency of pain management, and thus potentially ease patients' apprehensions. Individualized protocols potentially communicate information about management in a timely manner. This may be particularly helpful in the ED. However, some patients have very complicated pain problems, which require an individualized approach. Protocols must be based on pharmacologically and psychologically sound approaches, and must be flexible. The use of poorly constructed protocols in an automatic manner may actually do harm. Fears of Addiction The fear of opioid addiction is clearly a crucial issue. We must assume that some patients with SCD disease are addicted to opioids and other substances, as addiction is a widespread problem in our society, and there is no reason to assume that SCD protects against genetic and psychologic vulnerability to addiction. 4 However, the respondents' high estimates of addiction are not at all substantiated by data in the few available studies, which show that the vast majority of patients are not addicted. 16-1s In this study, 53% of the ED physicians and 23% of the hematologists thought that more than 20% of adult patients are addicted. Even in the case of children, 24% of the ED physicians thought that more than 20% of patients are addicted. We know that health-care practitioners commonly overestimate the risk of opioid addiction in the pharmacologic management of pain. However, these are startlingly high figures. Clearly, these perceptions must be addressed and changed before substantial and meaningful alterations in clinical practice are possible. Changes in Practice The findings of this survey highlight the crucial need for changes in attitude and clinical practice if patients with sickle cell-related pain are to receive competent and humane analgesia. Unfortunately, as discussed by many authors, such change can be very difficult. Clinical practice is based not just on knowledge and data, but also on conscious and unconscious attitudes, belief systems, and prejudices. 4'6's'9'13'19 Every effort must be made to counteract inadequate information and attitudes based on misconceptions by dissemination of information and clinical guidelines to professional groups, especially including ED physicians, hematologists, and nurses. However, such efforts are necessary but not sufficient. One-on-one bedside teaching and mentoring, involving close personal interaction and role modeling are necessary to begin to address attitudes, beliefs, and prejudices, z If given the opportunity in professional meetings and courses, patients can effectively address prevalent misconceptions of healthcare practitioners that continue because of a lack of meaningful interaction with patients. Finally, patients can act as their own advocates.

7 174 Shapiro et al. Vol. 14 No. 3 September 1997 Health-care practitioners can aid patients in this by giving them accurate information, copies of clinical guidelines, and knowledge about the structure of the medical system (for example, with whom to discuss problems and impediments in care, how, and when.) Acknowledgment This study was supported by the Purdue Frederick Company. We would like to acknowledge the efforts of Dan Brookoff, MD, in helping to design the questionnaire and interpret the results. References 1. Brozovic M, Anionwu E. Sickle cell disease in Britain. J Clin Pathol 1984;37: Brozovic M, Davies S, Brownell A. Acute admissions of patients with sickle cell disease who live in Britain. BMJ 1987;294: Tetrault SM, Scott RB. Five year retrospective study on hospitalization and treatment of sickle cell anemia patients. In: Proceedings of the First National Symposium on Sickle Cell Disease. Bethesda, MD: Shapiro BS. Management of painful episodes in sickle cell disease. In: Schechter NL, Berde CB, Yaster M, eds. Pain in infants, children, and adolescents. Baltimore: Williams and Wilklns, 1993; Stjernsward J, Teoh N. The scope of the cancer pain problem. In: Foley KM, Bonica JJ, Ventafridda V, Callaway MV, eds. Advances in pain research and therapy, vol 16. New York: Raven, 1990: Cleeland CS. Pain control: public and physicians' attitudes, In: Hill CS, Fields WS, eds. Advances in pain research and therapy, vol 11. New York: Raven, 1989: Stimmel B. Adequate analgesia in narcotic dependency. In: Hill CS, Fields WS, eds. Advances in pain research and therapy, vol 11. New York: Raven, 1989: Weissman DE, Haddox JD. Opioid pseudoaddiction: an iatrogenic syndrome. Pain 1989;36: Carr DB, Jacox AK, eds. Acute pain management: operative or medical procedures and trauma. Bethesda, MD: United States Department of Health and Human Services, Public Health Service, Agency for Health Care Policy and Research, Benjamin LJ. Pain in sickle cell disease. In: Foley KM, Payne RM, eds. Current therapy of pain. Philadelphia: Decker, 1989: Payne R. Pain management in sickle cell disease: rationale and techniques. Ann NY Acad Sci 1989;565: Batenhorst RL, Maurer HS, Bertch I~k, et al. Patient controlled analgesia in uncomplicated sickle cell pain crisis. Blood 1987;70:$58a. 13. Schechter NL, Berrian FB, Katz SM. The use of patient-controlled analgesia in adolescents with sickle cell pain crisis: a preliminary report. J Pain Symptom Manage 1988;3: Holbrook CT. Patient-controlled analgesia pain management for children with sickle cell disease. J Assoc Acad Min Phys 1990;1: Shapiro BS, Cohen DE, Howe CJ. Patientcontrolled analgesia for sickle cell related pain. J Pain Symptom Manage 1993;8: Vichinsky EP, Johnson R, Lubin BH. Multidisciplinary approach to pain management in sickle cell disease. Am J Pediatr Hematol Oncol 1982;4: Brozovic M, Davies S, Yardumian A, Bellingham A, Marsh G, Stephens AD. Pain relief in sickle cell crisis [Letter]. Lancet 1986;2: Payne R. American Pain Society workshop on the management of sickle cell pain. Saint Louis, MO: Elander J, Midence K. A review of evidence about factors affecting quality of pain management in sickle cell disease. Clin J Pain 1996;12: Max MB. Improving outcomes of analgesic treatment: is education enough? Ann Intern Med 1990;113: