- Email: [email protected]
Patient-related barriers to management of cancer pain in Puerto Rico
Pain, 58 (1994) 233-238 0 1994 Elsevier Science
233 B.V. All rights reserved
0304-3959/94/$07X10
PAIN 2548
Patient-related
barriers to management
of cancer pain in Puerto Rico
Sandra E. Ward ‘,* and Lesbia Hernandez ’ Urkersity of
’
h
Wisconsin at Madison, School of Nursing, Comprehensicle Cuncer C‘enrer and Pain Rewarch Group, .Madrson. WI 5.1792 f USA) and b University of Puerto Rico Medical Sciences Campus. School of Pharmacy, San Itcan (Puerto Rico) (Received
8 October
1993, revision
received
22 December
IYY3. accepted
I4 January
IOY4J
Two hundred and sixty-three ambulatory patients older than 21 years of age who were attending Summary clinics at an oncology hospital in San Juan, Puerto Rico, were studied. They completed a questionnaire (BQ-PR) that measures 8 concerns about reporting pain and using analgesics, such as fears of addiction and tolerance and the belief that reporting pain can distract a physician from focusing on curing one’s disease. Ninety pcrccnt of the patients had at least some concern about each of the 8 topics, and mean scores on the 8 subscales were near the midpoint on a O-5 scale. There were significant inverse relationships between level of education, income, and BQ-PR total score. Those persons who experienced cancer-related pain on the day they completed the questionnaire were categorized as using adequate versus not adequate analgesic medication, a determination that was based on a comparison of their level of pain to the medication they were using. Those who were not using adequate analgesic medication had higher BQ-PR total scores than did those who were using adequate medication. Key words: Pain; Analgesia; Barriers Questionnaire,
Puerto Rican Form; Cancer
Introduction
Recently, investigators have demonstrated that Hispanics, compared to non-Hispanic Caucasians, receive less medication for their pain. Todd et al. (1933) found this to be the case for persons seeking care for an acute pain condition and Cleeland (1993) found it to be the case in a chronic (cancer) pain condition. In explaining why persons of Hispanic origin are undertreated for pain, Todd et al. (1993, p. 1539) suggest a failure on the part of physicians “to recognize the presence of pain in patients who are culturally different from themselves”. Although this explanation is a distinct possibility in the Todd study, it would not account for Cleeland’s data which were obtained from *
’
Corresponding author: Sandra Ward, Ph.D., R.N., University of Wisconsin-Madison, School of Nursing, 600 Highland Avenue, Madison, WI 53792, USA. Tel.: (608) 263-5277; FAX: (608) 2635332. This work was supported, in part, by grant number CA26582 from the National Cancer Institute and by grant number 350073 from the University of Puerto Rico. The authors would like to thank Charles Cleeland for his support of this project and June Dahl for her careful reading of an earlier draft of the manuscript.
SSDI 0304-3959(94)00024-9
a setting in which patients and staff arc similar in ethnicity in that all arc Puerto Rican. Other explanations must, therefore, be sought. For example, one might consider whether there are ethnic differences in the experience of pain. Specifically, is there evidence that given similar stimuli, pcrsons of different ethnic groups experience differences in the intensity of those stimuli? Although there is little experimentally controlled data on this question, the available data support the conclusion that even when statistically significant differences between groups are found, the effect sizes are small and unlikely to be evidenced in clinically significant differences in patients’ reports of pain (Weiscnberg et al. 197.5; Lipton and Marbach 1984; Bates et al. 1993). Recent data, however, suggest another possibility to explore. For non-Hispanic Caucasians, we know that patients’ concerns about reporting pain and using analgesics are related to the adequacy of the medications they are using for pain; those who have more concerns are likely to be using less than adequate medication (Ward et al. 1993). This finding has been replicated in a sample of Taiwanese patients (Lin and Ward 1994). Eight concerns that contribute to patients’ hesitancy to
134
report pain and to use analgesics were examined in the above two studies. These included fear of becoming addicted to analgesics, fear of becoming tolerant to analgesics, the fatalistic belief that pain with cancer is inevitable, concerns that problems with side effects outweigh the benefits of an analgesic, the belief that good patients do not complain, the belief that increases in pain signify disease progression, and the fear that pain medications are administered by injection (Ferrell and Schneider 1988; Hodes 1989; Ward et al. 1993). Because we have seen, in two cultures, that the extent to which patients have these concerns is related to the extent to which they are using adequate analgesics for pain, we question whether similar findings would be obtained in Puerto Rico. If such concerns were strong among Puerto Ricans, this would suggest that they may under-report pain, thus receive inadequate anaIgesic prescriptions, and perhaps go on to use even less medication than has been prescribed. To begin to explore these possibilities, the present study was designed to determine the extent to which Puerto Ricans with cancer have the above 8 concerns and to determine if these concerns are related to the adequacy of the medications they are using for pain. In order to assess adequacy of pain medication, data were collected regarding severity of pain and medications used for that pain.
Method Participants Participants were patients attending the outpatient radiotherapy and medical oncology clinics at the I. Gonzalez Martinez Oncologic Hospital in San Juan, Puerto Rico, during the months of January and February 1993. Eligibility criteria, which were purposefully broad to allow a wide spectrum of patients on study, were: older than 21 years of age, diagnosis of cancer, able to read and respond to the questionnaire in Spanish. Of the 307 consecutive patients who met these criteria and were invited to join the study. 270 (88%) did so. Of these 270 patients. 263 provided complete data. In this sample the most commonly reported sites of cancer were breast (n = 93). gynecologic tn = 38). prostate tn = 241, colon/rectum (n = 17J, and lung fn = 15). Of the participants 189 (72%) were female. The mean (SD) age of participants was 58.3 (12.7) years. Almost all (97%) of them had been born in Puerto Rico. Other demographic data are presented in Table I.
instruments Barriers Questionnaire, Puerto Rican Form (BQ-PR). The BQ-PR is a self-report instrument modified from the original Barriers Questionnaire (BQI, a questionnaire that measures the 8 previously described concerns: fatalism, fear of addiction, fear of tolerance. worry about side effects, fear of injections, desire to be a good patient, fear of disease progression, and worry about distracting a physician from curing disease (Ward et al. 1993). The instrument has 27 items with 3 items per subscale except for the side effects subscale which has 6 items. Participants rate their agreement with each item on a scale from 0 = do not agree at all to 5 = agree very much. Subscale scores (the mean of the items in a given subscale) and a
TABLE
I
DEMOGRAPHIC
INFORMATION
(n = 263)
Marital status Married Widowed Separated/divorced Single Income < $5000 5-9000 IO-14.000 IS-24,000 > S2S.000 Religion Catholic Evangelical Pentecostal Baptist No religion Other Education < 8th grade Completed Xth grade Some high school High school graduate Some college College grad Missing data
Total score (the mean of all items) are used in analyses. Internal consistency (alpha) for the BQ Total scale is 0.8Y and for the subscales ranges from 0.67 to 0.91 except for the Fatalism subscale for which alpha = 0.54 (Ward et al. 1993). Test-retest reliability over a l-week period for 56 persons w’as 0.90 for the Total scale and ranged from 0.60 to 0.81 for the subscales (Ward and Gatwood 1994). Content validity was determined by a panel of experts (Ward et al. 1993). To create the Puerto Rican version. the BQ was translated into Spanish by a bi-lingual person and then independently back-translated to English by another bi-lingual person. The two English versions were examined for comparable meanings. Where meanings were judged not to be comparable. the translation and back-translation process was repeated. The Spanish version of the instrument was then examined by native Puerto Ricans (both clinicians and patients) to determine if ‘the Spanish was appropriate for Puerto Rico. There were instances in which it was not and wording was altered for these items. Before being used in, the present study, the BQ-PR was pilot tested with 22 Puerto Rican adults with cancer who completed it twice, at a l-week interval. Data from these persons were not included in the present study. Test-retest reliabilities in the pilot study were very good; Time l-Time 2 correlations for the subscales ranged from 0.60 to 0.81 and for the total scale was 0.90. Internal consistency, alpha, for the total scale was 0.85. Brief Pain Inrwtoy (BPli. The BP1 is a self-report instrument which was used to assess pain severity (intensity) and the extent to which pain interferes with life activities (Daut et al. 1983: Cleeland 1989). The pain severity variables are ‘pain worst’, ‘pain least’. ‘pain average’, and ‘pain now’, each with a range of O-10, where 0 = no pain and 10 = pain as bad as you can imagine. The BP1 severity items have been shown to be reliable and valid. For example,
235 test-retest reliability of the ‘pain worst’ scale was 0.93 over a 2-day period in a sample of 20 inpatients with cancer and it was sensitive in detecting differential effects of interventions designed to decrease pain (Cleeland 1989). The extent to which pain interferes with life was assessed with 7 items, each with a range of O-10, where 0 = does not interfere and 10 = completely interferes. The 7 items address the extent to which pain interferes with general activity, mood, walking, working, sleeping, social relations, and enjoyment of life. An interference score is computed by taking the average of the 7 items. Internal consistency of this interference scale is excellent; Cronbach’s alpha was 0.90 in the present study. Patients are instructed to respond to the severity and interference items with respect to their experience in the last 24 h. The Spanish form of the BPI, developed for a study in Mexico, was used in the present study after slight modification in wording that created a version specific to the Spanish spoken in Puerto Rico (Romero et al. 1991).
Medications used Patients were asked by the data collector what, if any, medications they had used for pain in the past week, what route they had used (oral, patch, etc.), and whether a regular or PRN schedule was used. A list of names of medications was provided so that if a patient could not recall the name of his/her medication, the names could be read to prompt the patient’s memory.
Adequacy of pain management The Pain Management Index (PMI) (Cleeland 1993) is based on the World Health Organization’s (WHO) Analgesic Ladder. It is a comparison of the most efficacious analgesic used by a patient relative to the level of that patient’s reported pain. To construct the index one determines which of 4 levels of analgesic has been used, according to the WHO ladder: 0 = no analgesic, 1 = non-opioid (e.g., NSAID or acetaminophen), 2 = an opioid such as codeine, and 3 = an opioid such as morphine. Using the ‘pain worst’ item from the BP1 the following pain levels are assigned: 0 = pain worst rating of 0, 1 = pain worst rating of l-3, 2 = pain worst rating of 4-7, and 3 = pain worst rating of 8-10. The PM1 is computed by subtracting the patient’s pain level from the patient’s analgesic level. The resulting scores yield a 2-category system where negative scores indicate under-medication and scores of 0 or greater indicate acceptable medication. To reiterate, the PM1 was based on patients’ reports of medications used, not on what had been prescribed. Evidence of the validity of this index has been demonstrated, e.g., theoretically predicted relationships between the PM! and other measures have been obtained (Cleeland 1993; Ward et al. 1993).
Demographic data A brief set of demographic items was used to determine age, gender, income, and religious affiliation. Procedure. Data collectors for this study were pharmacy students from the School of Pharmacy of the University of Puerto Rico who worked under the supervision of one of the authors (Hernandez). When patients arrived in clinic for a regularly scheduled appointment, a data collector approached the patient, explained the study, and obtained consent. Patients completed the questionnaire independently but assistance was provided for the items which addressed their use of analgesic medications.
analgesics is presented. Then, data regarding the concerns that patients have about reporting pain and using analgesics (BQ-PR data) is described. Lastly, the question of the relationship between BQ-PR scores and the adequacy of analgesics used by the patients is addressed. Descriptive information regarding pain and use of analgesics
The severity of pain in this sample is summarized in Table II. The table includes descriptive information for the full sample (n = 263) and for the subsample of persons (n = 70) who stated they had experienced cancer-related pain on the day they completed the questionnaire. For this latter subgroup of patients, average and worst pain scores are near the midpoint on the scale. Similarly, pain interference scores are near the midpoint on the scale (mean: 4.60; SD: 2.79). With respect to the individual items that comprise the interference score, the mean (SD) values in rank order are as follows: mood 6.01 (3.89), activity 5.30 (3.711, work 4.90 (3.961, enjoy life 4.90 (4.081, sleep 4.51 (3.86), walk 3.70 (3.80), and relationships 2.86 (3.58). We examined the analgesics used by those 70 persons who reported having cancer-related pain on the day they completed the questionnaire. Twenty-two reported using no analgesic, 29 an NSAID or acetaminophen, 16 codeine, and 3 morphine. None of the patients reported using their pain medication on a regular, around-the-clock, basis - all said they used it PRN. All but 6 patients were using an oral route of administration; the other 6 had received intravenous pain medication. Barriers scores
Inspection of internal consistencies for the BQ-PR reveals that Cronbach’s alpha for the Total scale is very good (0.82) but alpha is low for most of the subscales (see Table III>. Because low alphas can decrease the possibility of noting significant relationships between variables, caution should be extended in interpreting TABLE
II
MEAN (SD) LIFE * Scale
PAIN
SEVERITY
AND
INTERFERENCE
WITH
Full sample (n = 263)
Subsample
Mean
SD
Mean
SD
2.83 3.76 2.34 2.60 2.24
2.90 3.56 2.61 2.76 2.90
4.60 5.89 3.60 4.49 3.96
2.79 3.15 2.65 2.84 3.26
Results
Interference Worst pain Least pain Average pain Now pain
The results will be presented in 3 sections, First descriptive information about pain and the use of
* Range for these scales is O-10. ** Persons reporting cancer pain questionnaire.
on the day they
(n = 70) **
completed
the
236
results that involve BQ-PR subscales, but findings involving the Total scale are dependable. For the remainder of this manuscript. emphasis will be placed on BQ-PR Total scale. The extent to which these patients have concerns about reporting pain and using analgesics is summarized in Table III. A very high percentage of persons had at least some agreement (scored > 0) with each of the subscalcs. The mean scores tend to be at or near the midpoint on the scales and range from 2.37 for Fatalism to 3.20 for Tolerance and Progression, The mean (SD) score for the Total scale is 2.82 (0.821, the median is 2.82, the mode is 2.44, and the skewness coefficient is - 0.005, indicating that the distribution has almost no deviation from normal. Analyses were performed to determine whether the demographic variables (age, gender, education, income, and marital status) were related to the BQ-PR Total score using t-tests (for gender and marital status) and correlations (for age, education, and income). There were no differences in BQ-PR Total scores by gender or marital status (married vs. not married). Age was not related to BQ-PR, but there were inverse relationships between education and BQ-PR (r = - 0.30, P < 0.001) and between income and BQ-PR (r = - 0.25, P < 0.001 I. The correlations between BQ-PR Total score and measures of pain severity were small but statistically significant in 3 of 4 instances: pain least (r =.0.23, P < 0.01), pain average (r = 0.23, P < O.Ol), and pain now (v = 0.17, P < 0.01). Unexpectedly, BQ-PR Total score was not correlated with the extent to which pain interferes with life. Adequacy of analgesics used for pain For the 70 persons who reported having cancer-related pain on the day they completed the questionnaires, PM1 groups were assigned as described earlier.
TABLE
III
MEAN 263) *
(SD)
TABLE
IV
MEAN (SD) BQ-PR SCORES FOR PERSONS USING ADEQUATE VS. INADEQUATE ANALGESICS FOR PAIN (n = 70) * Scale
Not adequate fn = 52)
Adequate fn = 18)
f
Addiction Tolerance Side effects Fatalism Desire to be good Distraction Progression Injections Total BQ-PR
3.06 (1.54) 3.17C1.29) 2.X5 (0.‘) I ) 257 (I .35) 2.X8 f 1.44) 3.06 ( 1.54) 3.s3 (1.47) 2.65 t I .52) 2.99 (OK?)
2.67 3.28 2.25 2.S7 2.46 2.67 2.61 2.26 2.56
I .X6 0.30 2.31 ** 0.01 I.31 I .03 2.42 ** I.10 2.65 **
.-
(1.37) (1.2Y) (0.96) f1.10) (1.05) (1.37) (1.36) f I .23) (0.48)
* For the subsample of persons who reported on the day they completed the questionnaire. ** I’ c 0.05.
having
cancer
pain
Eighteen of these 70 (26%) were categorized as using adequate medication and 52 (74%) as using less than adequate medication. These two groups were compared to determine whether they differed on BQ-PR Total or subscale scores. The groups differed in Total BQ-PR; those who were using adequate medication had significantly lower scores than those who were not using adequate medication (see Table IV for means). Although statistically significant, the magnitude of the relationship between BQ-PR Total scores and PM1 group was small (eta2 = 0.06). The two groups also differed on BQ-PR Side effects and Progression subscales, such that persons who were using adequate medication had significantly lower scores than those who were not using adequate medication. Analyses were conducted to determine whether demographic variables (age, education, income, and gender) were related to PM1 group using t tests (for age, education, and income) and chi-square analyses (for gender). There were no significant relationships.
Discussion BQ-PR
SUBSCALE
AND
TOTAL
_____ Scale
Mean
SD
Alpha
Addiction Tolerance Side effects Fatalism Desire to be good Distraction Progression injections Total BQ-PR
3.05 3.20 2.6X 2.37 2.7x 3.00 3.20 2.45 2.X?
1.41 I .42 O.YY
0.62 tj.s4 0.47 0.37 OS0 0.56 0.76 0.61 0.X2
I.30 I.39 1.37 1.57 1.52 0.X2
-
SCORES
3
fn =
> 0 **
96 Y5 YY 92 Y5 Y4 Y3 90 YY
* The range for these scores is O-5. ** The percentage of persons who scored greater than 0 on the subscale, i.e.. the percentage of persons having at least some agreement with the items in the suhscale.
The data reveal that patients in this sample have concerns about addiction, tolerance, and other issues measured by the BQ-PR, that these concerns are stronger for persons with lower levels of education and income, and that persons using inadequate analgesic medication have higher levels of concerns compared to persons using adequate medications. These findings parallel the findings of prior studies in which the concerns of non-Hispanic Caucasians and Taiwanese patients were examined (Ward et al. 1993; Lin and Ward 19941, and suggest a strong need to test the efficacy of educational interventions in overcoming these barriers. In developing such interventions there is a need to
237
determine how to provide clear and accurate information about complex concepts at a language level that is appropriate for persons who have low levels of educational attainment. Examination of the rank order of scores on the BQ-PR subscales reveals that concerns about tolerance and concerns that pain signifies disease progression were very robust. These two concerns were followed closely by fears of addiction and worry that reporting pain might distract a ‘physician from concentrating on curing cancer. These are not simple concepts. Given that persons with high levels of education, such as physicians and nurses, are often seen to confuse addiction, physical dependence, and tolerance, it will be a challenge to determine how to provide accurate information to persons who, on average, have completed the eighth grade (McCaffery et al. 1990). It is particularly pressing that this be accomplished because in this and other studies it is consistently apparent that the persons most likely to hold the concerns here studied are those persons with the lowest.levels of education and income (Ward et al. 1993; Lin and Ward 1994). One impetus for this study was prior data demonstrating that minority patients are more likely than non-minority patients to receive inadequate medication for pain (Cleeland 1993; Todd et al. 1993). This finding, combined with the fact that persons of low socioeconomic status have many misconceptions about cancer (Loehrer et al. 19911, led us to question the extent to which Hispanic patients have concerns (many of which are misconceptions) about pain management. We found high levels of such concerns. It is not clear, however, if these concerns contribute to the fact that Hispanic patients experience less adequate management of their pain than do non-Hispanics. The patients in this study had such low levels of income and education, compared to our prior samples of non-Hispanics, that these samples could not be compared. That is, because there was a confound between ethnicity and both income and education, one could not statistically control for income and education and then test for differences between the groups in terms of adequacy of pain management. In future work one challenge will be to determine the differential contribution of various factors in accounting for Hispanics being more likely than nonHispanic Caucasians to be under-treated for pain. It is clear that patient-related barriers are not likely to be the sole factors that account for inadequate management of pain. The large percentage of persons who were in pain but using inadequately efficacious analgesics (74%) suggests that the assessment-behavior of nurses and physicians and the prescribing-behavior of physicians should be examined. Consider that Cleeland, using the PM1 computed with medications that had been prescribed, found that 60% of minority pa-
tients were inadequately medicated (Clceland 1993). In the present study, the PM1 was computed with medications that patients reported using, and we found that 74% of the patients were inadequately medicated. Taken together these studies are consistent with a scenario in which physicians prescribe inadequate analgesics and patients compound the problem by actually using even less. A related challenge is to develop a more sophisticated index of adequacy of pain management. The PM1 is a simple useful beginning approach to indexing this complex concept. Because the PM1 is based on a single report of pain severity and does not take adjuvant medications into account, it may over or underestimate the ‘true’ nature of how well pain is managed. Another challenge is to determine if Puerto Rican patients have concerns about reporting pain and using analgesics that go beyond those examined in the present study. The use of open-ended questions and content analysis would help determine if patients have concerns that were not covered by the BQ-PR. Similarly, in this study we examined only the patients and not their significant others or family caregivers. Based on previous data showing that family members’ attitudes exert a significant influence on health-related behavior in Hispanic persons, one could hypothesize that family members’ concerns may be as significant as patients’ concerns in explaining the use (or under-use) of analgesic medications (Marin et al. 1990). Though further study is clearly necessary to address gaps in our present state of knowledge, the data from the present study show compelling reasons for alterations in clinical management of cancer-related pain in Puerto Rican patients; these data replicate prior findings regarding the large percentage of patients who are using less than adequately efficacious analgesics for pain (Cleeland 1993), and they replicate prior findings indicating that one explanation for this problem is that patients have concerns about reporting pain and using analgesics (Ward et al. 1993). Therefore, clinicians should consider educational efforts to address patients’ concerns. Patients need to understand that addiction is a rare consequence of using analgesics for pain, that pain with cancer is not inevitable, that most analgesics can be administered orally (rather than by injection), and that most side effects can be prevented or controlled.
References Bates, MS., Edwards, W.T. and Anderson, K.O.. Ethnocultural influences on variation in chronic pain perception, Pain, 52 (1993) 101-112. Cleeland, C., Documenting barriers to cancer pain management. In: C.R. Chapman and K.M. Foley (Eds.), Current and Emerging
738 Issues in Cancer Pain: Research and Practice, Raven Press, New York, 1993, pp. 321-330. Cleeland. C., Measurement of pain by subjective report. In: CR. Chapman and J.D. Loeser (Eds.). Issues in Pain Measurement: Advances in Pain Research and Therapy, Vol. 12, Raven Press, New York, 1989, pp. 391-403. Daut, R.. Cleeland, C. and Flanery, R., Development of the Wisconsin Brief Pain Questionnaire to assess pain in cancer and other diseases, Pain, 17 (1983) 197-210. Ferrell, B.R. and Schneider, C.. Experience and management of cancer pain at home, Cancer Nurs., 11 (1988) 84-90. Hades, R.. Cancer patients’ needs and concerns when using narcotic analgesics. In: C.S. Hill and W.S. Fields (Eds.), Advances in Pain Research and Therapy, Vol. II, Raven Press, New York, 1989, pp. 91-99. Lin, C., and Ward, S., Patient-related barriers to cancer pain management in Taiwan, Cancer Nurs., 17 (1994). Lipton, J.A. and Marbach, J.J., Ethnicity and the pain experience, Sot. Sci. Med., 19 (1984) 1279-1298. Loehrer, P.. Greger, H., Weinberger, M., Musick. B., Miller, M., Nichols, C.. Bryan, J., Higgs, D. and Brock, D., Knowledge and beliefs about cancer in a socioeconomically disadvantaged population, Cancer, 68 (1991) 1665-1671. Marin. B., Marin, G., Perez-Stable, E. Otero-Sabogal, R. and Sabo-
gal, F.. Cultural differences in attitudes toward smoking: developing messages using the theory of reasoned action, J. Appl. Sot. Psychol., 20 (1990) 478-493. McCaffery, M., Ferrell, B., O’Neil-Page, E., Lester, M. and Ferrell. B., Nurses’ knowledge of opioid analgesic drugs and psychological dependence, Cancer Nurs., I3 (1990) 21-27. Romero, J., Plancarte, R., Heidrich, G., Cleeland, C.. Firt time opioid use for the control of cancer pain in a previously opioid naive population - a comparison of two samples, Presented at the American Pain Society annual scientific meeting, New Orleans, Louisianna, 1991. Todd, K.H., Samaroo. N. and Hoffman, J.R., Ethnicity as a risk factor for inadequate emergency department analgesia, JAMA, 269 (1993) 1537-1.539. Ward, S. and Gatwood, J., Concerns about reporting pain and using analgesics: A comparison of persons with and without cancer. Cancer Nurs., 17 (1994) 200-206. Ward, SE., Goldberg, N., Miller-McCauley, V., Mueller, C., Nolan, A., Pawlik-Plank, D., Robbins, A., Stormoen, D. and Weissman, D.E., Patient-related barriers to management of cancer pain, Pain, 52 (1993) 319-324. Weisenberg, M., Kreindler, M., Schachat, R., Werboff, J.. Pain: anxiety and attitudes in black, white and Puerto Rican patients. Psychosom. Med., 37 (1975) 123-135.
233 B.V. All rights reserved
0304-3959/94/$07X10
PAIN 2548
Patient-related
barriers to management
of cancer pain in Puerto Rico
Sandra E. Ward ‘,* and Lesbia Hernandez ’ Urkersity of
’
h
Wisconsin at Madison, School of Nursing, Comprehensicle Cuncer C‘enrer and Pain Rewarch Group, .Madrson. WI 5.1792 f USA) and b University of Puerto Rico Medical Sciences Campus. School of Pharmacy, San Itcan (Puerto Rico) (Received
8 October
1993, revision
received
22 December
IYY3. accepted
I4 January
IOY4J
Two hundred and sixty-three ambulatory patients older than 21 years of age who were attending Summary clinics at an oncology hospital in San Juan, Puerto Rico, were studied. They completed a questionnaire (BQ-PR) that measures 8 concerns about reporting pain and using analgesics, such as fears of addiction and tolerance and the belief that reporting pain can distract a physician from focusing on curing one’s disease. Ninety pcrccnt of the patients had at least some concern about each of the 8 topics, and mean scores on the 8 subscales were near the midpoint on a O-5 scale. There were significant inverse relationships between level of education, income, and BQ-PR total score. Those persons who experienced cancer-related pain on the day they completed the questionnaire were categorized as using adequate versus not adequate analgesic medication, a determination that was based on a comparison of their level of pain to the medication they were using. Those who were not using adequate analgesic medication had higher BQ-PR total scores than did those who were using adequate medication. Key words: Pain; Analgesia; Barriers Questionnaire,
Puerto Rican Form; Cancer
Introduction
Recently, investigators have demonstrated that Hispanics, compared to non-Hispanic Caucasians, receive less medication for their pain. Todd et al. (1933) found this to be the case for persons seeking care for an acute pain condition and Cleeland (1993) found it to be the case in a chronic (cancer) pain condition. In explaining why persons of Hispanic origin are undertreated for pain, Todd et al. (1993, p. 1539) suggest a failure on the part of physicians “to recognize the presence of pain in patients who are culturally different from themselves”. Although this explanation is a distinct possibility in the Todd study, it would not account for Cleeland’s data which were obtained from *
’
Corresponding author: Sandra Ward, Ph.D., R.N., University of Wisconsin-Madison, School of Nursing, 600 Highland Avenue, Madison, WI 53792, USA. Tel.: (608) 263-5277; FAX: (608) 2635332. This work was supported, in part, by grant number CA26582 from the National Cancer Institute and by grant number 350073 from the University of Puerto Rico. The authors would like to thank Charles Cleeland for his support of this project and June Dahl for her careful reading of an earlier draft of the manuscript.
SSDI 0304-3959(94)00024-9
a setting in which patients and staff arc similar in ethnicity in that all arc Puerto Rican. Other explanations must, therefore, be sought. For example, one might consider whether there are ethnic differences in the experience of pain. Specifically, is there evidence that given similar stimuli, pcrsons of different ethnic groups experience differences in the intensity of those stimuli? Although there is little experimentally controlled data on this question, the available data support the conclusion that even when statistically significant differences between groups are found, the effect sizes are small and unlikely to be evidenced in clinically significant differences in patients’ reports of pain (Weiscnberg et al. 197.5; Lipton and Marbach 1984; Bates et al. 1993). Recent data, however, suggest another possibility to explore. For non-Hispanic Caucasians, we know that patients’ concerns about reporting pain and using analgesics are related to the adequacy of the medications they are using for pain; those who have more concerns are likely to be using less than adequate medication (Ward et al. 1993). This finding has been replicated in a sample of Taiwanese patients (Lin and Ward 1994). Eight concerns that contribute to patients’ hesitancy to
134
report pain and to use analgesics were examined in the above two studies. These included fear of becoming addicted to analgesics, fear of becoming tolerant to analgesics, the fatalistic belief that pain with cancer is inevitable, concerns that problems with side effects outweigh the benefits of an analgesic, the belief that good patients do not complain, the belief that increases in pain signify disease progression, and the fear that pain medications are administered by injection (Ferrell and Schneider 1988; Hodes 1989; Ward et al. 1993). Because we have seen, in two cultures, that the extent to which patients have these concerns is related to the extent to which they are using adequate analgesics for pain, we question whether similar findings would be obtained in Puerto Rico. If such concerns were strong among Puerto Ricans, this would suggest that they may under-report pain, thus receive inadequate anaIgesic prescriptions, and perhaps go on to use even less medication than has been prescribed. To begin to explore these possibilities, the present study was designed to determine the extent to which Puerto Ricans with cancer have the above 8 concerns and to determine if these concerns are related to the adequacy of the medications they are using for pain. In order to assess adequacy of pain medication, data were collected regarding severity of pain and medications used for that pain.
Method Participants Participants were patients attending the outpatient radiotherapy and medical oncology clinics at the I. Gonzalez Martinez Oncologic Hospital in San Juan, Puerto Rico, during the months of January and February 1993. Eligibility criteria, which were purposefully broad to allow a wide spectrum of patients on study, were: older than 21 years of age, diagnosis of cancer, able to read and respond to the questionnaire in Spanish. Of the 307 consecutive patients who met these criteria and were invited to join the study. 270 (88%) did so. Of these 270 patients. 263 provided complete data. In this sample the most commonly reported sites of cancer were breast (n = 93). gynecologic tn = 38). prostate tn = 241, colon/rectum (n = 17J, and lung fn = 15). Of the participants 189 (72%) were female. The mean (SD) age of participants was 58.3 (12.7) years. Almost all (97%) of them had been born in Puerto Rico. Other demographic data are presented in Table I.
instruments Barriers Questionnaire, Puerto Rican Form (BQ-PR). The BQ-PR is a self-report instrument modified from the original Barriers Questionnaire (BQI, a questionnaire that measures the 8 previously described concerns: fatalism, fear of addiction, fear of tolerance. worry about side effects, fear of injections, desire to be a good patient, fear of disease progression, and worry about distracting a physician from curing disease (Ward et al. 1993). The instrument has 27 items with 3 items per subscale except for the side effects subscale which has 6 items. Participants rate their agreement with each item on a scale from 0 = do not agree at all to 5 = agree very much. Subscale scores (the mean of the items in a given subscale) and a
TABLE
I
DEMOGRAPHIC
INFORMATION
(n = 263)
Marital status Married Widowed Separated/divorced Single Income < $5000 5-9000 IO-14.000 IS-24,000 > S2S.000 Religion Catholic Evangelical Pentecostal Baptist No religion Other Education < 8th grade Completed Xth grade Some high school High school graduate Some college College grad Missing data
Total score (the mean of all items) are used in analyses. Internal consistency (alpha) for the BQ Total scale is 0.8Y and for the subscales ranges from 0.67 to 0.91 except for the Fatalism subscale for which alpha = 0.54 (Ward et al. 1993). Test-retest reliability over a l-week period for 56 persons w’as 0.90 for the Total scale and ranged from 0.60 to 0.81 for the subscales (Ward and Gatwood 1994). Content validity was determined by a panel of experts (Ward et al. 1993). To create the Puerto Rican version. the BQ was translated into Spanish by a bi-lingual person and then independently back-translated to English by another bi-lingual person. The two English versions were examined for comparable meanings. Where meanings were judged not to be comparable. the translation and back-translation process was repeated. The Spanish version of the instrument was then examined by native Puerto Ricans (both clinicians and patients) to determine if ‘the Spanish was appropriate for Puerto Rico. There were instances in which it was not and wording was altered for these items. Before being used in, the present study, the BQ-PR was pilot tested with 22 Puerto Rican adults with cancer who completed it twice, at a l-week interval. Data from these persons were not included in the present study. Test-retest reliabilities in the pilot study were very good; Time l-Time 2 correlations for the subscales ranged from 0.60 to 0.81 and for the total scale was 0.90. Internal consistency, alpha, for the total scale was 0.85. Brief Pain Inrwtoy (BPli. The BP1 is a self-report instrument which was used to assess pain severity (intensity) and the extent to which pain interferes with life activities (Daut et al. 1983: Cleeland 1989). The pain severity variables are ‘pain worst’, ‘pain least’. ‘pain average’, and ‘pain now’, each with a range of O-10, where 0 = no pain and 10 = pain as bad as you can imagine. The BP1 severity items have been shown to be reliable and valid. For example,
235 test-retest reliability of the ‘pain worst’ scale was 0.93 over a 2-day period in a sample of 20 inpatients with cancer and it was sensitive in detecting differential effects of interventions designed to decrease pain (Cleeland 1989). The extent to which pain interferes with life was assessed with 7 items, each with a range of O-10, where 0 = does not interfere and 10 = completely interferes. The 7 items address the extent to which pain interferes with general activity, mood, walking, working, sleeping, social relations, and enjoyment of life. An interference score is computed by taking the average of the 7 items. Internal consistency of this interference scale is excellent; Cronbach’s alpha was 0.90 in the present study. Patients are instructed to respond to the severity and interference items with respect to their experience in the last 24 h. The Spanish form of the BPI, developed for a study in Mexico, was used in the present study after slight modification in wording that created a version specific to the Spanish spoken in Puerto Rico (Romero et al. 1991).
Medications used Patients were asked by the data collector what, if any, medications they had used for pain in the past week, what route they had used (oral, patch, etc.), and whether a regular or PRN schedule was used. A list of names of medications was provided so that if a patient could not recall the name of his/her medication, the names could be read to prompt the patient’s memory.
Adequacy of pain management The Pain Management Index (PMI) (Cleeland 1993) is based on the World Health Organization’s (WHO) Analgesic Ladder. It is a comparison of the most efficacious analgesic used by a patient relative to the level of that patient’s reported pain. To construct the index one determines which of 4 levels of analgesic has been used, according to the WHO ladder: 0 = no analgesic, 1 = non-opioid (e.g., NSAID or acetaminophen), 2 = an opioid such as codeine, and 3 = an opioid such as morphine. Using the ‘pain worst’ item from the BP1 the following pain levels are assigned: 0 = pain worst rating of 0, 1 = pain worst rating of l-3, 2 = pain worst rating of 4-7, and 3 = pain worst rating of 8-10. The PM1 is computed by subtracting the patient’s pain level from the patient’s analgesic level. The resulting scores yield a 2-category system where negative scores indicate under-medication and scores of 0 or greater indicate acceptable medication. To reiterate, the PM1 was based on patients’ reports of medications used, not on what had been prescribed. Evidence of the validity of this index has been demonstrated, e.g., theoretically predicted relationships between the PM! and other measures have been obtained (Cleeland 1993; Ward et al. 1993).
Demographic data A brief set of demographic items was used to determine age, gender, income, and religious affiliation. Procedure. Data collectors for this study were pharmacy students from the School of Pharmacy of the University of Puerto Rico who worked under the supervision of one of the authors (Hernandez). When patients arrived in clinic for a regularly scheduled appointment, a data collector approached the patient, explained the study, and obtained consent. Patients completed the questionnaire independently but assistance was provided for the items which addressed their use of analgesic medications.
analgesics is presented. Then, data regarding the concerns that patients have about reporting pain and using analgesics (BQ-PR data) is described. Lastly, the question of the relationship between BQ-PR scores and the adequacy of analgesics used by the patients is addressed. Descriptive information regarding pain and use of analgesics
The severity of pain in this sample is summarized in Table II. The table includes descriptive information for the full sample (n = 263) and for the subsample of persons (n = 70) who stated they had experienced cancer-related pain on the day they completed the questionnaire. For this latter subgroup of patients, average and worst pain scores are near the midpoint on the scale. Similarly, pain interference scores are near the midpoint on the scale (mean: 4.60; SD: 2.79). With respect to the individual items that comprise the interference score, the mean (SD) values in rank order are as follows: mood 6.01 (3.89), activity 5.30 (3.711, work 4.90 (3.961, enjoy life 4.90 (4.081, sleep 4.51 (3.86), walk 3.70 (3.80), and relationships 2.86 (3.58). We examined the analgesics used by those 70 persons who reported having cancer-related pain on the day they completed the questionnaire. Twenty-two reported using no analgesic, 29 an NSAID or acetaminophen, 16 codeine, and 3 morphine. None of the patients reported using their pain medication on a regular, around-the-clock, basis - all said they used it PRN. All but 6 patients were using an oral route of administration; the other 6 had received intravenous pain medication. Barriers scores
Inspection of internal consistencies for the BQ-PR reveals that Cronbach’s alpha for the Total scale is very good (0.82) but alpha is low for most of the subscales (see Table III>. Because low alphas can decrease the possibility of noting significant relationships between variables, caution should be extended in interpreting TABLE
II
MEAN (SD) LIFE * Scale
PAIN
SEVERITY
AND
INTERFERENCE
WITH
Full sample (n = 263)
Subsample
Mean
SD
Mean
SD
2.83 3.76 2.34 2.60 2.24
2.90 3.56 2.61 2.76 2.90
4.60 5.89 3.60 4.49 3.96
2.79 3.15 2.65 2.84 3.26
Results
Interference Worst pain Least pain Average pain Now pain
The results will be presented in 3 sections, First descriptive information about pain and the use of
* Range for these scales is O-10. ** Persons reporting cancer pain questionnaire.
on the day they
(n = 70) **
completed
the
236
results that involve BQ-PR subscales, but findings involving the Total scale are dependable. For the remainder of this manuscript. emphasis will be placed on BQ-PR Total scale. The extent to which these patients have concerns about reporting pain and using analgesics is summarized in Table III. A very high percentage of persons had at least some agreement (scored > 0) with each of the subscalcs. The mean scores tend to be at or near the midpoint on the scales and range from 2.37 for Fatalism to 3.20 for Tolerance and Progression, The mean (SD) score for the Total scale is 2.82 (0.821, the median is 2.82, the mode is 2.44, and the skewness coefficient is - 0.005, indicating that the distribution has almost no deviation from normal. Analyses were performed to determine whether the demographic variables (age, gender, education, income, and marital status) were related to the BQ-PR Total score using t-tests (for gender and marital status) and correlations (for age, education, and income). There were no differences in BQ-PR Total scores by gender or marital status (married vs. not married). Age was not related to BQ-PR, but there were inverse relationships between education and BQ-PR (r = - 0.30, P < 0.001) and between income and BQ-PR (r = - 0.25, P < 0.001 I. The correlations between BQ-PR Total score and measures of pain severity were small but statistically significant in 3 of 4 instances: pain least (r =.0.23, P < 0.01), pain average (r = 0.23, P < O.Ol), and pain now (v = 0.17, P < 0.01). Unexpectedly, BQ-PR Total score was not correlated with the extent to which pain interferes with life. Adequacy of analgesics used for pain For the 70 persons who reported having cancer-related pain on the day they completed the questionnaires, PM1 groups were assigned as described earlier.
TABLE
III
MEAN 263) *
(SD)
TABLE
IV
MEAN (SD) BQ-PR SCORES FOR PERSONS USING ADEQUATE VS. INADEQUATE ANALGESICS FOR PAIN (n = 70) * Scale
Not adequate fn = 52)
Adequate fn = 18)
f
Addiction Tolerance Side effects Fatalism Desire to be good Distraction Progression Injections Total BQ-PR
3.06 (1.54) 3.17C1.29) 2.X5 (0.‘) I ) 257 (I .35) 2.X8 f 1.44) 3.06 ( 1.54) 3.s3 (1.47) 2.65 t I .52) 2.99 (OK?)
2.67 3.28 2.25 2.S7 2.46 2.67 2.61 2.26 2.56
I .X6 0.30 2.31 ** 0.01 I.31 I .03 2.42 ** I.10 2.65 **
.-
(1.37) (1.2Y) (0.96) f1.10) (1.05) (1.37) (1.36) f I .23) (0.48)
* For the subsample of persons who reported on the day they completed the questionnaire. ** I’ c 0.05.
having
cancer
pain
Eighteen of these 70 (26%) were categorized as using adequate medication and 52 (74%) as using less than adequate medication. These two groups were compared to determine whether they differed on BQ-PR Total or subscale scores. The groups differed in Total BQ-PR; those who were using adequate medication had significantly lower scores than those who were not using adequate medication (see Table IV for means). Although statistically significant, the magnitude of the relationship between BQ-PR Total scores and PM1 group was small (eta2 = 0.06). The two groups also differed on BQ-PR Side effects and Progression subscales, such that persons who were using adequate medication had significantly lower scores than those who were not using adequate medication. Analyses were conducted to determine whether demographic variables (age, education, income, and gender) were related to PM1 group using t tests (for age, education, and income) and chi-square analyses (for gender). There were no significant relationships.
Discussion BQ-PR
SUBSCALE
AND
TOTAL
_____ Scale
Mean
SD
Alpha
Addiction Tolerance Side effects Fatalism Desire to be good Distraction Progression injections Total BQ-PR
3.05 3.20 2.6X 2.37 2.7x 3.00 3.20 2.45 2.X?
1.41 I .42 O.YY
0.62 tj.s4 0.47 0.37 OS0 0.56 0.76 0.61 0.X2
I.30 I.39 1.37 1.57 1.52 0.X2
-
SCORES
3
fn =
> 0 **
96 Y5 YY 92 Y5 Y4 Y3 90 YY
* The range for these scores is O-5. ** The percentage of persons who scored greater than 0 on the subscale, i.e.. the percentage of persons having at least some agreement with the items in the suhscale.
The data reveal that patients in this sample have concerns about addiction, tolerance, and other issues measured by the BQ-PR, that these concerns are stronger for persons with lower levels of education and income, and that persons using inadequate analgesic medication have higher levels of concerns compared to persons using adequate medications. These findings parallel the findings of prior studies in which the concerns of non-Hispanic Caucasians and Taiwanese patients were examined (Ward et al. 1993; Lin and Ward 19941, and suggest a strong need to test the efficacy of educational interventions in overcoming these barriers. In developing such interventions there is a need to
237
determine how to provide clear and accurate information about complex concepts at a language level that is appropriate for persons who have low levels of educational attainment. Examination of the rank order of scores on the BQ-PR subscales reveals that concerns about tolerance and concerns that pain signifies disease progression were very robust. These two concerns were followed closely by fears of addiction and worry that reporting pain might distract a ‘physician from concentrating on curing cancer. These are not simple concepts. Given that persons with high levels of education, such as physicians and nurses, are often seen to confuse addiction, physical dependence, and tolerance, it will be a challenge to determine how to provide accurate information to persons who, on average, have completed the eighth grade (McCaffery et al. 1990). It is particularly pressing that this be accomplished because in this and other studies it is consistently apparent that the persons most likely to hold the concerns here studied are those persons with the lowest.levels of education and income (Ward et al. 1993; Lin and Ward 1994). One impetus for this study was prior data demonstrating that minority patients are more likely than non-minority patients to receive inadequate medication for pain (Cleeland 1993; Todd et al. 1993). This finding, combined with the fact that persons of low socioeconomic status have many misconceptions about cancer (Loehrer et al. 19911, led us to question the extent to which Hispanic patients have concerns (many of which are misconceptions) about pain management. We found high levels of such concerns. It is not clear, however, if these concerns contribute to the fact that Hispanic patients experience less adequate management of their pain than do non-Hispanics. The patients in this study had such low levels of income and education, compared to our prior samples of non-Hispanics, that these samples could not be compared. That is, because there was a confound between ethnicity and both income and education, one could not statistically control for income and education and then test for differences between the groups in terms of adequacy of pain management. In future work one challenge will be to determine the differential contribution of various factors in accounting for Hispanics being more likely than nonHispanic Caucasians to be under-treated for pain. It is clear that patient-related barriers are not likely to be the sole factors that account for inadequate management of pain. The large percentage of persons who were in pain but using inadequately efficacious analgesics (74%) suggests that the assessment-behavior of nurses and physicians and the prescribing-behavior of physicians should be examined. Consider that Cleeland, using the PM1 computed with medications that had been prescribed, found that 60% of minority pa-
tients were inadequately medicated (Clceland 1993). In the present study, the PM1 was computed with medications that patients reported using, and we found that 74% of the patients were inadequately medicated. Taken together these studies are consistent with a scenario in which physicians prescribe inadequate analgesics and patients compound the problem by actually using even less. A related challenge is to develop a more sophisticated index of adequacy of pain management. The PM1 is a simple useful beginning approach to indexing this complex concept. Because the PM1 is based on a single report of pain severity and does not take adjuvant medications into account, it may over or underestimate the ‘true’ nature of how well pain is managed. Another challenge is to determine if Puerto Rican patients have concerns about reporting pain and using analgesics that go beyond those examined in the present study. The use of open-ended questions and content analysis would help determine if patients have concerns that were not covered by the BQ-PR. Similarly, in this study we examined only the patients and not their significant others or family caregivers. Based on previous data showing that family members’ attitudes exert a significant influence on health-related behavior in Hispanic persons, one could hypothesize that family members’ concerns may be as significant as patients’ concerns in explaining the use (or under-use) of analgesic medications (Marin et al. 1990). Though further study is clearly necessary to address gaps in our present state of knowledge, the data from the present study show compelling reasons for alterations in clinical management of cancer-related pain in Puerto Rican patients; these data replicate prior findings regarding the large percentage of patients who are using less than adequately efficacious analgesics for pain (Cleeland 1993), and they replicate prior findings indicating that one explanation for this problem is that patients have concerns about reporting pain and using analgesics (Ward et al. 1993). Therefore, clinicians should consider educational efforts to address patients’ concerns. Patients need to understand that addiction is a rare consequence of using analgesics for pain, that pain with cancer is not inevitable, that most analgesics can be administered orally (rather than by injection), and that most side effects can be prevented or controlled.
References Bates, MS., Edwards, W.T. and Anderson, K.O.. Ethnocultural influences on variation in chronic pain perception, Pain, 52 (1993) 101-112. Cleeland, C., Documenting barriers to cancer pain management. In: C.R. Chapman and K.M. Foley (Eds.), Current and Emerging
738 Issues in Cancer Pain: Research and Practice, Raven Press, New York, 1993, pp. 321-330. Cleeland. C., Measurement of pain by subjective report. In: CR. Chapman and J.D. Loeser (Eds.). Issues in Pain Measurement: Advances in Pain Research and Therapy, Vol. 12, Raven Press, New York, 1989, pp. 391-403. Daut, R.. Cleeland, C. and Flanery, R., Development of the Wisconsin Brief Pain Questionnaire to assess pain in cancer and other diseases, Pain, 17 (1983) 197-210. Ferrell, B.R. and Schneider, C.. Experience and management of cancer pain at home, Cancer Nurs., 11 (1988) 84-90. Hades, R.. Cancer patients’ needs and concerns when using narcotic analgesics. In: C.S. Hill and W.S. Fields (Eds.), Advances in Pain Research and Therapy, Vol. II, Raven Press, New York, 1989, pp. 91-99. Lin, C., and Ward, S., Patient-related barriers to cancer pain management in Taiwan, Cancer Nurs., 17 (1994). Lipton, J.A. and Marbach, J.J., Ethnicity and the pain experience, Sot. Sci. Med., 19 (1984) 1279-1298. Loehrer, P.. Greger, H., Weinberger, M., Musick. B., Miller, M., Nichols, C.. Bryan, J., Higgs, D. and Brock, D., Knowledge and beliefs about cancer in a socioeconomically disadvantaged population, Cancer, 68 (1991) 1665-1671. Marin. B., Marin, G., Perez-Stable, E. Otero-Sabogal, R. and Sabo-
gal, F.. Cultural differences in attitudes toward smoking: developing messages using the theory of reasoned action, J. Appl. Sot. Psychol., 20 (1990) 478-493. McCaffery, M., Ferrell, B., O’Neil-Page, E., Lester, M. and Ferrell. B., Nurses’ knowledge of opioid analgesic drugs and psychological dependence, Cancer Nurs., I3 (1990) 21-27. Romero, J., Plancarte, R., Heidrich, G., Cleeland, C.. Firt time opioid use for the control of cancer pain in a previously opioid naive population - a comparison of two samples, Presented at the American Pain Society annual scientific meeting, New Orleans, Louisianna, 1991. Todd, K.H., Samaroo. N. and Hoffman, J.R., Ethnicity as a risk factor for inadequate emergency department analgesia, JAMA, 269 (1993) 1537-1.539. Ward, S. and Gatwood, J., Concerns about reporting pain and using analgesics: A comparison of persons with and without cancer. Cancer Nurs., 17 (1994) 200-206. Ward, SE., Goldberg, N., Miller-McCauley, V., Mueller, C., Nolan, A., Pawlik-Plank, D., Robbins, A., Stormoen, D. and Weissman, D.E., Patient-related barriers to management of cancer pain, Pain, 52 (1993) 319-324. Weisenberg, M., Kreindler, M., Schachat, R., Werboff, J.. Pain: anxiety and attitudes in black, white and Puerto Rican patients. Psychosom. Med., 37 (1975) 123-135.