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Cancer pain management among underserved minority outpatients
Perceived needs and barriers to optimal control
Article first published online: 15 APR 2002
Copyright © 2002 American Cancer Society
Volume 94, Issue 8, pages 2295–2304, 15 April 2002
How to Cite
Anderson, K. O., Richman, S. P., Hurley, J., Palos, G., Valero, V., Mendoza, T. R., Gning, I. and Cleeland, C. S. (2002), Cancer pain management among underserved minority outpatients. Cancer, 94: 2295–2304. doi: 10.1002/cncr.10414
- Issue published online: 15 APR 2002
- Article first published online: 15 APR 2002
- Manuscript Accepted: 9 NOV 2001
- Manuscript Revised: 30 OCT 2001
- Manuscript Received: 7 SEP 2001
- U.S. Army Medical Research and Materiel Command. Grant Number: DAMD17-94-J-4233
- Public Health Service grant. Grant Number: CA64766
- National Cancer Institute, Department of Health and Human Services, Bethesda, MD. Grant Number: CA64766
- cancer pain;
- pain management;
- African American;
Minority patients with cancer are at risk for undertreatment of cancer-related pain. Most studies of patient-related barriers to pain control have surveyed primarily non-Hispanic Caucasian patients. The purpose of the current study was to explore barriers to optimal pain management among African-American and Hispanic patients with cancer through the use of structured patient interviews. Structured interviews allowed the authors to probe for previously unidentified barriers to pain management in these populations.
Thirty-one socioeconomically disadvantaged minority patients with cancer (14 African-American patients and 17 Hispanic patients) who had cancer-related pain completed structured interviews that assessed three main content areas: information and communication regarding cancer pain, treatment of cancer pain, and the meaning of cancer pain.
The African-American and Hispanic patients reported severe pain and many concerns about pain management. The majority of patients in both ethnic groups expressed a belief in stoicism and concerns about possible addiction to opioid medications and the development of tolerance. The patients described their physicians as the most frequent and trusted source of information about cancer pain. However, patients also reported difficulties with communication and a reluctance to complain of pain.
The reported barriers to pain management indicate that socioeconomically disadvantaged African-American and Hispanic patients can benefit from educational interventions on cancer pain that dispel myths about opioids and teach patients to communicate assertively about their pain with their physicians and nurses. Cancer 2002;94:2295–304. © 2002 American Cancer Society.
Pain due to cancer often is under managed, especially among minority patients. Data from outpatients collected through the Eastern Cooperative Oncology Group (ECOG) indicate that 42% of patients with recurrent or metastatic carcinoma and pain are treated inadequately for their pain. We identified a number of factors that increase the risk of under management of cancer pain, including receiving treatment at an institution that serves primarily African-American and Hispanic patients and a patient-physician discrepancy in the estimate of pain severity.1 Because minority patients are at risk for under management of pain, we completed a second ECOG outpatient study of minority patients. Analysis of this minority extension revealed that 59% of African-American outpatients and 74% of Hispanic outpatients with cancer-related pain received less than adequate analgesic prescriptions.2
Recent data suggest some improvement in analgesic prescribing practices for African-American and Hispanic patients who have cancer. A multisite survey of minority patients with cancer who experienced cancer-related pain revealed that most of the patients were receiving analgesics of an appropriate strength.3 However, 65% of patients reported severe pain and limited pain relief. The reason for the discrepancy between the analgesic and pain intensity data may be due to inadequate dosages and/or patient nonadherence to analgesic regimens. In addition, the patients' physicians underestimated pain severity for over half of the Hispanic and African-American patients. The patients' physicians and nurses identified inadequate pain assessment, patient reluctance to report pain, and patient reluctance to take opioids as major barriers to pain management.
Similarly, studies of ECOG and Radiation Therapy Oncology Group physicians revealed that significant barriers to cancer pain control are inadequate pain assessment, patient reluctance to report pain, and patient reluctance to take pain medications.4, 5 In a study of patients with cancer pain who required opioid analgesics, concerns about addiction and other possible side effects of opioids (e.g., mental confusion, increased tolerance) were associated strongly with reluctance to report pain and willingness to experience pain rather than take opioid analgesics.6 A separate study of patient-related barriers in a sample of patients with cancer found that the majority of the patients held beliefs that may be barriers to pain management.7 Patients who were less educated or who had lower incomes were significantly more likely to hold these beliefs.
Most studies of patient-related barriers to pain control have surveyed primarily non-Hispanic Caucasian patients. Although minority patients share the same concerns that limit pain control in non-Hispanic white patients,8–10 data from the ECOG outpatient studies described above suggest that some of these concerns may be reported more frequently among minority patients.1, 2 Similarly, a recent study of patients with cancer who received analgesics from home health or hospice agencies found that Hispanic patients were more likely than Caucasian patients to report beliefs (e.g., take pain medicines only when pain is severe) that may hinder effective pain management.11
The results of the ECOG studies suggested that there may be differences in the pain-related concerns of African-American and Hispanic patients. Hispanic patients were significantly more likely than African-American patients to report concerns about taking too much analgesic medication and to report that they needed more information about pain treatment.2 In addition, Hispanic patients reported more frequently that they were concerned about side effects from pain medication. However, our recent study of minority patients with cancer found no significant differences between African-American and Hispanic patients with regard to their attitudes toward pain treatment.3 Thus, it is not clear whether there are different barriers to pain control among these two minority groups. More information is needed about potential barriers to pain control for African-American and Hispanic patients. The assessment of patient-related barriers to pain control was not the primary goal of our previous studies of minority patients, and only a few patient attitudes were measured.1–3
In additional to attitudinal barriers, minority patients with cancer may face barriers to pain control such as cost and limited availability of analgesic medications. Minority patients who are economically disadvantaged and lack health insurance coverage for prescriptions may not be able to afford analgesic medications. When patients have health insurance with prescription coverage, they may have difficulty with copayments or incidental costs (e.g., transportation, child care) associated with obtaining prescriptions. A recent study of pharmacies in New York City found that access to analgesics was more difficult for minority patients compared with nonminority patients.12 Only 25% of pharmacies in minority communities stocked sufficient opioids for pain management, compared with 72% of pharmacies in nonminority neighborhoods.
The purpose of the current study was to examine barriers and attitudes toward cancer pain and pain management among African-American and Hispanic patients through the use of structured patient interviews. Structured interviews allowed us to probe for previously unidentified barriers to pain management in these populations. The information from this study will be used to identify perceived pain management needs and barriers to pain management that need to be addressed in educational interventions for African-American and Hispanic patients who have cancer.
MATERIALS AND METHODS
A total of 39 patients (16 African-American patients and 23 Hispanic patients) with metastatic or recurrent carcinoma and disease-related pain were enrolled in the study. Thirty-one patients (14 African-American patients and 17 Hispanic patients) completed their scheduled interviews, and 8 patients failed to keep their interview appointment. The patients who were not interviewed were lost to follow-up in the clinic or were too ill to finish the study. The patients were recruited in the oncology clinics at three large public hospitals in Miami, Florida; Fort Worth, Texas; and Los Angeles, California. The oncology clinics in these institutions provide medical care to primarily socioeconomically disadvantaged, minority patients. The study was approved by the Institutional Review Boards of The University of Texas M. D. Anderson Cancer Center and each participating institution.
The eligibility criteria for the patients included the following: 1) outpatients seen in oncology clinics at the participating institutions; 2) members of African-American or Hispanic minority groups; 3) pathologic diagnosis of carcinoma; 4) recurrent or metastatic disease; 5) cancer-related pain with a duration of at least 1 month; 6) pain worst score on the Brief Pain Inventory (BPI) > 4; 7) no major surgery within the past 30 days; 8) an ECOG performance status of 0, 1, 2, or 3; and 9) age ≥ 18 years.
A bilingual research nurse approached all potentially eligible patients and administered the BPI short form, a standard, valid questionnaire for the clinical assessment of cancer pain.14 If the patient's pain worst score was > 4 on the 0–10 scale, then the nurse described the purpose of the study and asked the patient whether he or she would like to participate. If a patient agreed to participate, then the nurse obtained written informed consent and scheduled a time for the interview. Interviews were conducted in English or Spanish, depending on patient preference. The interview required about 30–60 minutes to complete. All interviews were tape recorded and subsequently transcribed. The interviews in Spanish were translated to English by an experienced bilingual translator.
The structured interview was developed by a committee that included the authors, site investigators, and oncology health professionals with extensive clinical experience with patients in each of the target groups. The interview was translated into Spanish and then back-translated by two separate bilingual translators. The questions were worded in simple language to make them as clear as possible. The interview questions assessed three main content areas: information and communication regarding cancer pain, treatment of cancer pain, and the meaning of cancer pain. Basic demographic information also was obtained from the patients.
The major questions in the information and communication area were as follows: 1) Where have you gotten most of your information about cancer and cancer pain? Did you find any of this information helpful? 2) What would be the best ways for you to get information about cancer pain? 3) Whom do you trust the most to give you good information about cancer pain? 4) Is it hard for you to talk about physical problems? 5) Is it hard for you to talk about having cancer or cancer pain? 6) Do you talk to your doctor or nurse about having cancer pain? 7) Does the doctor or nurse ask you about having pain or do you usually tell them first? Does he or she understand about your pain? 8) How bad would the pain have to be before you would make a special call to the doctor, nurse, or clinic?
The major questions in the treatment of cancer pain area were as follows: 1) Has the doctor prescribed medicine for your cancer pain? Can you tell me what was prescribed? 2) How often do you take your pain medicine, and how much do you take? 3) Has it been hard to get pain medicine? 4) Have you had any problems (side effects) with your pain medicine, such as constipation, feeling sick to your stomach, or feeling groggy? 5) When your pain is being treated, what do you expect to happen? 6) What level is your pain when you feel that your pain medicine is working for you? 7) What other ways do you use to help you cope with your pain? 8) What do you see as the benefits to you in taking your pain medicine?
The patients also were asked to rate their agreement with specific concerns about pain medications: fear of addiction, fear of tolerance, concern about side effects, worry about the efficacy of pain medicines, worry about distracting the doctor from treating the cancer, fear of disease progression, desire to be a good patient, reluctance to tell the doctor about pain, concerns about their family's reaction to opioid medication, and stoicism. The patients rated their agreement with each concern on a three-point scale from not at all to a lot.
The major questions in the meaning of cancer pain area were as follows: 1) To me, pain means…. 2) Do you ever have thoughts about why you have cancer or cancer pain? 3) How does pain change your life? 4) What information should we include in a program to provide information for patients who have cancer pain?
Pain and pain interference were measured with the BPI Short Form.14 The BPI asks patients to rate their pain for the last 24 hours on 0–10 scales at its worst, least, average, and now. Each scale is bounded by the words no pain at the 0 end and pain as bad as you can imagine at the other end. Using the same type of scales, patients also are asked to rate how their pain interferes with several quality-of-life domains, including general activity, walking, mood, sleep, work, relations with other people, and enjoyment of life. These scales are bounded by does not interfere at the 0 end and interferes completely at the other end. Issues of the validity and reliability of the BPI have been examined in detail.14, 15 Spanish and English versions of the BPI have been used in multisite studies of cancer pain and its treatment.1–3
The research nurse recorded the patient's current analgesic medications as prescribed by their physicians and assessed the patient's ECOG performance status.13 These data were used to estimate the adequacy of analgesic prescription by computing a Pain Management Index (PMI) for each patient.1 The PMI is based on guidelines for treating cancer pain from the World Health Organization and the Agency for Health Care Policy and Research.16, 17 Pain management is considered adequate when there is congruence between the patient's reported level of pain and the appropriateness of the prescribed analgesic drug. The PMI provides a comparison of the most potent analgesic prescribed for a patient relative to the level of that patient's reported pain. To determine the PMI, we classified the most potent analgesic prescribed (for chronic or breakthrough pain) as one of 4 levels (0, no analgesic; 1, nonopioid; 2, weak opioid; and 3, strong opioid), and the patient's pain worst score from the BPI was classified as mild (1–4), moderate (5–6), or severe (7–10). The PMI is computed by subtracting the pain level from the analgesic level.
Descriptive statistics (frequencies, percentages, means, and ranges) were determined for the patient responses to interview questions. Content analysis was performed on the transcribed interviews to identify patient concerns with regard to pain and pain management. The Fisher exact test was used to compare differences in the proportions of African-American and Hispanic patients with regard to demographic, disease-related, and pain-related variables. Pearson chi-square and Fisher exact tests were used to compare Hispanic and African-American patients with regard to attitudes related to pain and pain treatment. Two-sample Student t tests were used to compare mean group scores on the BPI pain severity and interference items. All tests were two sided.
Table 1 contains the basic demographic information about the patients in the study. The demographic data indicate that most African-American and Hispanic patients were single and were not working due to their illness or retirement. The majority of patients in both ethnic groups did not complete high school. Although the average monthly income of Hispanic patients was greater compared with the income of African–American patients (P = 0.08), there were no statistically significant differences between the two groups on the demographic variables. The most frequent disease sites for the total patient sample were the breast (35%), lung (16%), colorectum or stomach (16%), and prostate (13%). Thirteen percent of patients had hematologic malignancies. Most patients (74%) in both ethnic groups had experienced cancer-related pain for more than 6 months. The remaining patients (26%) had experienced pain for 1–6 months.
|Characteristic||African-American patients (n = 14)||Hispanic patients (n = 17)|
|High school educationa||5||36||3||18|
|Disabled due to illness||7||50||8||47|
|Country of origin|
|Mean (SD) monthly income ($)||481 (206)||—||873 (621)||—|
Table 2 presents the mean BPI scores and other pain-related variables for the African-American and Hispanic patients. The mean scores and standard deviations on the BPI pain severity items for both groups indicated moderate-to-severe pain intensity. There were no significant differences between the two ethnic groups on the BPI items. More than 75% of patients in both ethnic groups reported pain worst scores that indicated severe pain intensity. The patients also described significant interference due to pain in their activities of daily living. Both groups reported that their analgesic medications provided less than optimal pain relief. More than one-third of the patients in each group were prescribed analgesics that were insufficient given the intensity of their pain.
|Variable||African-American patients||Hispanic patients||95% CI of the difference in means or proportions|
|Brief Pain Inventory items: Mean (SD)|
|Pain worst||7.9 (2.1)||8.5 (1.7)||−0.9, 2.0|
|Pain average||7.2 (2.4)||6.7 (1.6)||−2.7, 1.7|
|Pain now||5.1 (3.5)||5.3 (3.5)||−2.4, 2.7|
|Pain least||4.2 (2.4)||5.3 (2.4)||−1.3, 3.5|
|Normal work||7.6 (3.1)||6.8 (3.7)||−3.3, 1.7|
|Relations with others||4.9 (4.6)||5.8 (3.7)||−2.1, 4.0|
|Walking ability||5.5 (4.2)||5.5 (3.5)||−2.8, 2.8|
|Mood||5.5 (4.4)||6.8 (3.3)||−1.5, 4.1|
|Enjoyment of life||7.4 (4.1)||6.2 (4.0)||−4.1, 1.9|
|General activity||7.6 (3.1)||6.1 (3.3)||−3.8, 0.9|
|Sleep||7.0 (2.9)||6.3 (2.8)||−2.8, 1.4|
|Pain relief from analgesics||63% (29)||51% (32)||−35%, 11%|
|Patients with negative Pain Management Index (%)a||36||35||−28, 29|
|Patients with severe pain (%)b||77||88||−34, 13|
|Patients with good ECOG performance status (%)c||71||94||−45, −1|
Information and Communication about Cancer Pain
Table 3 presents the most frequent sources of information about cancer and cancer pain for African-American and Hispanic patients. There were no significant differences between the two patient groups with regard to their information sources. Over 75% of both Hispanic patients and African-American patients reported getting most of their information about cancer and cancer pain from their physician or nurse. Fifty percent of African-American patients and 71% of Hispanic patients also obtained information about cancer and cancer pain from other persons with cancer or from cancer survivors. The family also was a frequent source of information for Hispanic patients (59%) and African-American patients (36%). Although 53% of Hispanic patients also received information about cancer and cancer pain from friends, only 14% of African-American patients had received information from friends (P = 0.06). Booklets, television shows, and commercials also were frequent sources of information for both patient groups.
|Information source||African-American patients (%)||Hispanic patients (%)||95% CI of the difference in proportion (%)|
|Doctor or nurse||79||82||−27, 20|
|Person with cancer||50||71||−49, 8|
|Family members||36||59||−52, 6|
|Television shows||64||53||−18, 40|
|Radio shows||21||24||−27, 23|
|Community group||29||12||−7, 41|
|Church member or staff||29||24||−21, 31|
The information received about cancer and cancer pain was described as helpful by all African-American and Hispanic patients. Most African-American patients (69%) and 44% of Hispanic patients felt that the best way to obtain information about cancer pain was by talking to a doctor or nurse. Another 31% of Hispanic patients and 23% of African-American patients named booklets as the best source of information. When they were asked about the most trusted source of information about cancer pain, 71% of Hispanic patients and 86% of African-American patients named their physician as the most trusted source.
Over half of African-American patients (57%) reported some difficulty discussing physical problems with other people, but only 12% of Hispanic patients reported this difficulty (P = 0.02). The two ethnic groups did not differ in reported difficulty with talking about having cancer, with 18% of Hispanic patients and 21% of African-American patients describing some difficulty. None of the Hispanic patients reported difficulty with talking about having cancer pain, but 21% of African-American patients indicated some difficulty in this area (P = 0.10).
Most African-American patients (93%) and all Hispanic patients stated that they discussed their cancer pain with their doctor or nurse. However, more than half of the African-American patients (57%) and 38% of Hispanic patients indicated that their doctor or nurse did not ask about pain prior to the patient telling them about their pain. Only 25% of African-American patients and 29% of Hispanic patients indicated that their doctor or nurse used a pain scale for pain assessment. The pain scale was described as helpful by all patients who were asked to use one to rate their pain intensity. Unfortunately, all of the patients indicated that they would wait until their pain was severe (≥ 7 on a 0–10 scale) before they would make a telephone call to their doctor, nurse, or oncology clinic. In addition, 88% of Hispanic patients and 82% of African-American patients would wait until their pain intensity was a 10 before calling for assistance. Despite the apparent gaps in communication, most Hispanic patients (86%) and African-American patients (92%) felt that their doctor understood about their pain.
Patient Perceptions of Pain Treatment
There were no significant differences between the two ethnic groups with regard to their medication use. Forty-three percent of African-American patients and 24% of Hispanic patients did not know the name of their pain medication. However, most Hispanic patients (94%) and African-American patients (92%) could report how often they took pain medication and how much they took. Over half of the patients in each ethnic group (69% of African-American patients and 59% of Hispanics patients) reported that they took their pain medication as prescribed by their physicians. However, 29% of Hispanic patients and 15% of African-American patients stated that they took less medication than prescribed. Fifteen percent of African-American patients and 12% of Hispanic patients indicated that they took more pain medication than prescribed.
The majority of African-American patients (75%) and Hispanic patients (76%) reported some problems with side effects from pain medicines. Constipation was the most commonly reported side effect by both African-American patients (50%) and Hispanic patients (59%). Sedation (grogginess) was described by 42% of African-American patients and by 24% of Hispanic patients. Nausea was reported by 35% of Hispanic patients and by 25% of African-American patients. Less frequently reported side effects were emesis, dizziness, and stomach pain.
Forty-two percent of African-American patients and 29% of Hispanic patients described some difficulty obtaining pain medications. The most frequently reported barriers were physician reluctance to prescribe opioids, cost, and limited availability. Difficulty obtaining prescriptions for opioids from their physicians was described by 25% of African-American patients but by none of the Hispanic patients. Cost was described as a barrier for 17% of African-American patients and by 6% of Hispanic patients. Limited availability of opioids in a local pharmacy was a barrier for 12% of Hispanic patients and for 8% of African-American patients. Theft of medication was not a major problem. One African-American patient and two Hispanic patients reported that someone had taken their pain medication from them on at least one occasion.
Twenty-five percent of African-American patients and 12% of Hispanic patients reported that they received an analgesic prescription that they never had filled. The reasons for not filling the prescription were similar for patients in the two ethnic groups: spontaneous improvement in pain, they had tried the analgesic previously and did not find it helpful, and fear of opioid medications. Forty-two percent of African-American patients and 18% of Hispanic patients admitted that they had filled a prescription for pain medication but had not taken it. The nonadherent patients in both ethnic groups reported similar reasons for discontinuing the medication: unacceptable side effects, no improvement in their pain after trying the analgesic, and spontaneous improvement in their pain.
Table 4 presents the percentages of patients in each ethnic group reporting concerns about taking opioid analgesics for their cancer pain. There were no significant differences between the two groups with regard to their reported concerns. Over 90% of African-American patients and 76% of Hispanic patients expressed some agreement with the belief that they should be strong and should not lean on pain medications. The majority of patients in both ethnic groups also reported some concerns about addiction and the possible development of tolerance to pain medications. Most patients also worried to some extent that pain medicine would not work for them, but they were reluctant to complain about their pain. About half of the patients in each ethnic group expressed some concerns about the side effects of opioid medications. Sixty-five percent of Hispanic patients, compared with 36% of African-American patients, were concerned about family members' reactions to their use of pain medications. More African-American patients than Hispanic patients wondered why their doctor did not know about their pain and take care of it, but this difference also was not significant (P = 0.07).
|Concerns about pain medicinesa||African-American patients (%)||Hispanic patients (%)|
|A lot||A little||A lot||A little|
|Be strong and not lean on pain medications||36||57||41||35|
|Concerns about tolerance||43||36||29||29|
|Worry about addiction||36||21||53||18|
|Worry that pain medicine will not work||38||31||12||59|
|Reluctance to complain about pain||29||43||29||29|
|Family concerned about pain medications||29||7||41||24|
|Concerns about side effects of analgesics||43||14||12||35|
|Wonder why doctor does not know about pain||31||46||18||18|
|Taking strong analgesic means death is near||43||0||18||18|
|Distract physician from treating the disease||21||21||12||41|
When they were asked what they expected from their pain treatment, about half of the Hispanic patients (53%) and 42% of African-American patients stated that they hoped their pain would become bearable. One-third of African-American patients and 41% of Hispanic patients indicated that they expected their pain to disappear completely as a result of pain treatment. Several patients in each ethnic group expressed the expectation that their pain treatment would enable them to return to work. Both Hispanic patients (mean ± standard deviation: 4.0 ± 2.3) and African-American patients (2.5 ± 2.1) reported mild pain as the level when they felt their pain medicine was working. When they were asked to describe the benefits of pain medications, both patient groups mentioned feeling better physically, having a better mood, doing more things with their family, and being able to do chores or work. None of the patients interviewed felt that other patients received better pain management.
Table 5 presents the percentages of African-American and Hispanic patients who reported using alternative ways of dealing with their pain in addition to pain treatments prescribed by their physicians. There were no significant differences between the two ethnic groups with regard to their use of alternative approaches. Prayer was the most frequently reported technique, with 83% of African-American patients and 47% of Hispanic patients reporting this pain-management approach (P = 0.06). About one-third of patients in each ethnic group reported taking nonprescription drugs for pain management that were not specifically recommended by their physicians or nurses. Relaxation techniques, special teas and foods, vitamins, and massage were less frequently reported approaches to pain control.
|Alternative technique||African American (%)||Hispanic (%)||95% CI of the difference in proportion (%)|
|Special teas||25||18||17, 68|
|Special foods||8||12||−22, 15|
|Nonprescription drugs||33||35||−31, 28|
|Other techniques||8||12||−22, 15|
Meaning of Cancer Pain
When they were asked to describe what pain meant to them, 73% of African-American patients talked about pain as hurt. Another 27% of African-American patients described pain as limited activity and impaired function. Only one African-American patient described pain as suffering. In contrast, 53% of Hispanic patients described pain as physical and/or emotional suffering. Another 18% of Hispanic patients defined pain as part of their disease or sickness. Twelve percent of Hispanic patients described pain as nothing. The remaining Hispanic patients (17%) described pain as death, hurt, or a way to get closer to God.
Eighty-eight percent of Hispanic patients and 82% of African-American patients reported some thoughts about why they had cancer. Many African-American patients (45%) and Hispanic patients (24%) questioned whether their cancer had resulted from exposure to toxins in their work or home environments or from lifestyle factors (e.g., smoking). Another 29% of Hispanic patients and 18% of African-American patients described their cancer as due to the will of God or fate. Other patients (24% of Hispanic patients and 18% of African-American patients) indicated that they had wondered why me but had not answered that question. None of the patients reported thoughts about why they had cancer pain. When they were asked to describe changes in their lives caused by pain, 45% of African-American patients and 41% of Hispanic patients reported general activity and work limitations due to pain. Fifty-five percent of African-American patients and 24% of Hispanic patients described changes in family and social activities and responsibilities caused by pain. Mood changes due to pain were reported by 18% of Hispanic patients and by 18% of African-American patients. Only half of the African-American patients and 57% of Hispanic patients had told their physicians about the changes in their lives caused by pain.
When they were asked what information should be included in educational materials on cancer pain, the patients in both ethnic groups suggested information about pain medications, working with physicians to manage pain, and using religious faith to cope with pain. Other suggestions were to encourage patients to keep going and to have a positive outlook. Several patients suggested that educational materials should include suggestions for helping family members to understand about cancer pain.
Our results provide important information on the perceived pain-management needs and barriers to pain management for socioeconomically disadvantaged African-American and Hispanic patients with cancer. Although most of the patients in each ethnic group were prescribed analgesics that were appropriate for their pain intensity, more than 75% of the patients in both groups reported severe pain intensity. Both patient groups also reported that their analgesic medications provided less than optimal pain relief. The discrepancy between the PMI data and reported pain intensity and pain relief is consistent with our previous findings and may be due to several factors.3 It is possible that the patients were not receiving adequate dosages of their analgesics. One limitation of the current study is that we did not assess actual dosages of analgesics. Another possible reason for the discrepancy is that patients were not adhering to their prescribed regimens. Over 40% of Hispanic patients and 30% of African-American patients reported nonadherence to the prescribed regimens. Although some of these patients took more medication than prescribed when their pain increased, they often failed to take their analgesics around the clock as recommended by their physicians. These patients typically did not understand the benefits of taking pain medication on a regular basis.
In addition, patients sometimes took less medication than prescribed due to side effects of analgesics. Although most of the patients reported some difficulty with side effects, very few patients were told in advance about possible side effects or how to manage them. For example, no patient reported receiving dietary recommendations for preventing constipation, the most common side effect associated with opioids.
The majority of the interviewed patients in each ethnic group reported many concerns about taking opioid medications for their pain. A belief in the importance of stoicism was evident. Over 75% of the patients in each group agreed to some extent with the belief that one should be strong and not lean on pain medications. Concerns about possible addiction and the development of tolerance also were frequently endorsed beliefs. Most patients indicated some reluctance to complain about their pain to their health care providers and questioned whether pain medications would be effective. Although more African-American patients than Hispanic patients wondered why their doctor did not know about their pain and treat it effectively, this difference was not significant (P = 0.07).
Unfortunately, 25% of African-American patients described physician reluctance to prescribe opioid medications for their pain. Some of these patients commented that their physicians warned them about possible addiction to pain medication. Although no Hispanic patients reported physician reluctance to prescribe opioids, 35% of Hispanic patients were receiving analgesics that were inadequate for the severity of their pain. When opioid analgesics were prescribed, most patients did not have difficulty obtaining them from the hospital or clinic pharmacy. Lack of availability of a prescribed opioid in a neighborhood pharmacy was described as a barrier by 10% of the interviewed patients. Cost was described as a barrier to obtaining pain medication by another 10% of patients. Most patients, however, were able to obtain financial assistance with the costs of medication.
Responses to the information and communication questions revealed that the physician is the most frequent and most trusted source of information about cancer and cancer-related pain. Although nurses also were named as important sources of information, many of the patients reported nursing shortages and limited time with a staff nurse in their oncology clinic. Cancer survivors and persons with cancer also were common sources of information. In addition, family members and friends were frequent providers of information. The Hispanic patients tended to report friends as information sources more often than African-American patients (P = 0.06). Multimedia sources, such as television, also were used by most of the interviewed patients in both ethnic groups. These results suggest that the physician plays a crucial role in patient education regarding cancer pain management. Patients also are open to learning about cancer-related pain from booklets, television, video tapes, and other multimedia sources. Given the demands on health care providers' time, physicians and nurses can promote patient education by providing appropriate media materials on cancer pain management.
The African-American patients tended to report more difficulty than the Hispanic patients discussing physical problems with other people. However, the two groups did not differ in reported difficulty with talking about having cancer or cancer-related pain. Almost all patients in both groups stated that they discussed their pain with their physicians. However, the majority of African-American patients and more than one-third of Hispanic patients indicated that they had to bring up the issue of pain management. Pain assessment reportedly was limited, with less than one-third of patients describing some quantified measurement of their pain. Even more disturbing was the finding that more than 80% of patients in both ethnic groups would wait until their pain severity was a 10 on a 10-point scale before calling their health care provider or oncology clinic for assistance with pain management.
Our results revealed that many of the patients in both ethnic groups used prayer and religious beliefs as complementary strategies for coping with pain. Also, about one-third of patients were taking nonprescription analgesics that were not recommended by their physicians or nurses. Special teas, foods, vitamins, and supplements also were reported as complementary strategies. Thus, it is important to assess carefully what nonprescription medications or supplements a patient is taking.
The meaning of cancer-related pain differed somewhat between the two patient groups. Hispanic patients were more likely to describe pain as suffering, whereas African-American patients described it as hurt. When defining what pain meant to them, Hispanic patients tended to focus more on the emotional component of pain, whereas African-American patients talked more about the sensory component. Additional research with larger patient samples is needed to explore possible differences in the meaning of pain between the two ethnic groups.
Our study demonstrates several limitations. Although the sample size is adequate for a qualitative study, the size does limit the generalizability of our results. In addition, we did not interview nonminority patients and do not have comparable data regarding majority patients' pain-related needs and barriers. The results of our previous research indicated some differences in the needs and barriers faced by minority patients compared with nonminority patients.1, 2 Minority patients reported a greater need for pain-related information than nonminority patients and were more likely to report the need for a stronger analgesic and for additional pain medication. Another limitation to the current study is the lack of data on the effects of socioeconomic status. All of the interviewed patients were disadvantaged socioeconomically and were coping with very limited incomes. Additional research is needed to compare the pain-related needs and barriers of disadvantaged minority and nonminority patients with the needs and barriers of more economically secure minority and nonminority patients.
The barriers to pain management reported by each patient group indicate that socioeconomically disadvantaged African-American and Hispanic patients can benefit from educational interventions on cancer pain that dispel myths about opioids and that teach patients to communicate assertively about their pain with their physicians and nurses. In addition, some patients need education regarding realistic expectations for pain treatment. Although most patients expected pain reduction to a mild level of pain intensity, over one-third of the total sample expected the complete elimination of pain. If this is not a realistic goal for a patient, then additional education is required.
The patients in both groups were consistent in their recommendations for educational materials on cancer pain management. The patients agreed that information about pain medications and their side effects, how to work with health care providers to manage pain, and encouragement to use religious faith to cope with pain should be included in educational video tapes or booklets. Our research group has used the current results, along with findings from focus groups and previous research, to develop educational materials on cancer pain that target socioeconomically disadvantaged Hispanic and African-American patients. An educational intervention using these materials is being evaluated in a multisite clinical trial. The educational materials are designed to educate and empower patients to be advocates for their pain management and to work with their health care team to obtain optimal pain control.
The authors thank Dr. Patricia Washington, Adriene Barmann, Rosemary Galdiano, Graciela Bernal, and Liliana Escobar-Chavez for assistance with patient recruitment, interviewing, and transcription.
- 14Pain assessment in cancer. In: OsobaD, editor. Effect of cancer on quality of life. Boca Raton: CRC Press Inc., 1991: 293–305..
- 15Measurement of pain by subjective report. In: ChapmanCR, LoeserJD, editors. Advances in pain research and therapy, volume 12: issues in pain measurement. New York: Raven Press, 1989: 391–403..
- 16World Health Organization. Cancer pain relief. Geneva: World Health Organization, 1986.
- 17Management of cancer pain. Clinical practice guideline no. 9. AHCPR publication no. 94-0592. Rockville: Agency for Health Care Policy and Research, U.S. Department of Health and Human Services, Public Health Service, 1994., , , et al.