Variations in Patients Self-Report of Pain by Treatment Setting

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1 444 Journal of Pain and Symptom Management Vol. 25 No. 5 May 2003 Original Article Variations in Patients Self-Report of Pain by Treatment Setting Cielito C. Reyes-Gibby, DrPH, Linda L. McCrory, RN, and Charles S. Cleeland, PhD Pain Research Group (C.C.R.-G., L.L.M., C.S.C.), Department of Symptom Research, University of Texas M.D. Anderson Cancer Center; and University of Texas School of Public Health (C.C.R.-G.), Houston Health Science Center, Houston, Texas, USA Abstract Patient reluctance to report pain has been shown to be a primary reason for inadequate pain control among cancer patients. Very little is known about whether patients self-reports of pain vary by treatment settings. We reviewed 63 medical records of female breast cancer patients who visited two treatment settings on the same day in a tertiary cancer center in the United States. Patients rating of pain (on a 0 [no pain] 10 scale) were abstracted. Results showed discrepancies regarding patients self-reports of pain intensity in the two treatment settings. Fifty-one percent of patients self-report of pain differed between the two treatment settings, with 38% reporting a pain score 4 in the outpatient breast clinic and 0 in the outpatient chemotherapy clinic. Although it is expected that pain may vary on a sporadic or activityrelated basis, these results may also indicate the need to review clinic staffs methods of assessing patients about their pain and a review of documentation practices of pain assessment. J Pain Symptom Manage 2003;25: U.S. Cancer Pain Relief Committee. Published by Elsevier. All rights reserved. Key Words Pain, variations, outcomes, symptom Introduction Pain is prevalent among patients with cancer. Approximately 55% of outpatients with metastatic cancer have disease-related pain, and 36% have pain of sufficient severity to impair their function. 1 Despite national (Agency for Health Care Policy and Research, 2 the National Address reprint requests to: Cielito C. Reyes-Gibby, DrPH, Pain Research Group, Department of Symptom Research, U.T. M.D. Anderson Cancer Center, 1515 Holcombe Blvd., Box 221, Houston, TX 77030, USA. Accepted for publication: August 30, Presented in part at the 21 st Annual Scientific Meeting of the American Pain Society, April, Comprehensive Cancer Network 3 ) and international (the World Health Organization 4 ) guidelines for its management, many patients with pain are not prescribed an analgesic appropriate to the severity of their pain. Studies of outpatients with metastatic or recurrent cancer receiving treatment found that over 40% of those with pain were not prescribed analgesics strong enough to match the severity of their pain. 1,5 The quality of life of cancer patients and their families is profoundly affected by the presence of severe pain and other symptoms Severe pain may also present a significant challenge for the resources of those who manage cancer patients. Pain that is unrecognized by the treatment team may become so severe that an emergency room visit or hospitalization is required 2003 U.S. Cancer Pain Relief Committee /03/$ see front matter Published by Elsevier. All rights reserved. doi: /s (03)

2 Vol. 25 No. 5 May 2003 Variations in Pain Reports 445 for management, adding substantially to the cost of treatment and to the disruption of the patients routine and that of their family. Untreated pain may also negatively influence treatment effectiveness by interrupting treatment A critical first step towards successful clinical pain management is patients report of pain severity. Patients reluctance to report pain has been shown to be a primary reason for inadequate pain control among cancer patients. For example, studies by Von Roenn et al., 15 Larson et al., 16 and Cleeland et al., 5 showed that both oncologists and oncology nurses identified patient reluctance to report pain as one of the major barriers to the adequate control of cancer pain. Patients may be reluctant to report symptoms to their physicians or nurses because of fear of the meaning of the symptoms, fear of complicating their treatment by taking additional drugs, or fear of the psychoactive component of symptom management drugs. Patients may also think that complaining of symptoms will distract their health care providers from focusing their efforts to cure the disease. 8,17,18 In addition, patients reluctance to report symptoms is often compounded by the difficulty of finding time for adequate symptom assessment in a busy clinic. 19 Patients may also be reluctant to bother their health care providers with symptoms that they consider an expected part of their disease. 20 Little is known about whether patients selfreport of pain severity vary by treatment settings. Empirical investigations on variations of patients self-report of pain are needed to improve the practice of pain management. The purpose of this study was to examine if patients reports of pain during a same day visit vary by treatment settings. Methods This is a cross-sectional study of outpatient breast cancer patients. The study was approved by the Institutional Review Board of the participating institution. Eligible subjects included outpatients with breast cancer, of all ethnic origins, with same-day visits in at least two outpatient treatment settings between January 2001 and December 2001 at a large tertiary cancer care center in the southwestern United States. The time period of January December 2001 was chosen since the institution incorporated pain assessment as a standard of care in all patient care areas during that year. Aside from the institution s commitment to improving patient care, this was also initiated partly in response to the announcement by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) of including new pain management standards into its accreditation manuals for facilities, such as ambulatory care centers and hospitals. 21 Screening for pain (current pain) using the 0 10 numeric rating scale in adult patient care areas and regular pain reassessment are key components of the institution s standard of care. Patients were identified using the Institutional Database and were selected using random sampling techniques. Data were obtained through a retrospective chart review and using the Institutional Database. The medical chart abstraction was standardized by: 1) selecting earliest date of visit in cases of multiple same-day visits in at least two treatment settings and 2) selecting visits closest in time if same-day visits were in more than 2 settings. Patients self reports of pain were abstracted from the nurses notes in the medical charts. These pain ratings were reflective of being screened for the presence of pain (pain now) and the determination of pain intensity using a 0 10 numeric rating scale (with 0 no pain). Data on demographic variables (age, race); type of outpatient treatment setting; and stage of disease were obtained from the Institutional Database. The variable stage of disease is based on the Surveillance Epidemiology and End Results General Summary Stage, 22 which is determined using a combination of the most precise clinical and pathological documentation of the extent of disease available in the medical record. Because the participating institution is a referral institution and thus sees patients who have had prior treatments, some patients may be classified as having no evidence of disease, posttreatment. Descriptive statistics were utilized to summarize data. Chi-square analyses were conducted to determine associations between the variables. Fisher s exact test was computed when a cell has an expected frequency of less than Results A total of 63 charts was included in the analyses. Visited outpatient treatment settings included

3 446 Reyes-Gibby et al. Vol. 25 No. 5 May 2003 both the breast clinic and the chemotherapy clinic. Table 1 shows selected characteristics of our patient sample. Age ranged from (mean 55). Fifty-one were white, 8 were black, and 4 had other race category. Stage of disease information included 4 with localized involvement; 18 with regional lymph node involvement; 20 with distant metastases; 11 with no evidence of disease (NED), post treatment; and 6 lacked staging information. Table 2 shows 38% of the patients in the breast clinic rated their pain as moderate to severe ( 4 on a 0 10 numeric pain rating scale). In contrast, only 3% rated their pain as moderate to severe in the chemotherapy clinic. Overall, 51% of patients self-report of pain severity differed between the two treatment setting, with 38% reporting a pain score 4 in the outpatient breast clinic and a score of 0 in the outpatient chemotherapy clinic (P 0.001). Table 3 shows that neither demographic (age, race) nor stage of disease variables were found to be associated with the differences in patients self-reports of pain between the two settings. Table 1 Selected Patient Characteristics Characteristics n % Age Race White Black Other 4 6 Disease stage Local 4 7 Nodes Distant NED PostRX a Unstaged 6 10 a No evidence of disease, post-treatment. Table 2 Distribution of Patients Self-Reports of Pain Pain Severity Breast Clinic Chemotherapy Clinic n % n % Total Discussion Statistically significant differences in patients self-reports of pain were observed in the two treatment setting, with a pain rating of zero consistently observed in the outpatient chemotherapy clinic. Similar to other studies, this finding may indicate that patients are reluctant to report pain to avoid delaying their chemotherapy treatment and in distracting their health care providers from focusing their efforts to treat the disease. 8,17,18 There may be several alternative explanations to our findings. It is possible that due to the ordering (i.e., the first visit was always in the breast clinic, followed by the chemotherapy clinic) of the visits, the patients assumed that their pain report in the breast clinic (first visited treatment setting) was sufficient to initiate pain treatment. Thus, their reluctance to report the second time in the chemotherapy clinic. This points to the need to conduct a study where there is no consistent sequencing (ordering) in the visits to assess if the same results will be obtained. Another explanation of this finding may be the patients assumption that the chemotherapy clinic is not set up for pain intervention. A physician must be contacted if pain medication is needed. This may add to the patients reluctance to distract the healthcare professionals from administering chemotherapy by reporting pain. Considering that these outpatients were not asked to refrain from taking their medication prior to their visit, the findings that they suffer from moderate to severe pain during an outpatient visit point to the need to educate patients in taking their pain medications in a timely manner. Nevertheless, clinicians should always assess and manage their patients pain, especially prior to treatment. Neither demographic characteristics nor stage of disease, the surrogate measure for disease severity, were shown as related to the discrep-

4 Vol. 25 No. 5 May 2003 Variations in Pain Reports 447 Characteristics Table 3 Relationship Between Selected Variables and Discrepancy in Severity Values of Pain Self-Reports, Univariate Analyses Discrepancy (0 3 points) Discrepancy (4 10 points) P value Setting A (Breast Clinic) 39 1 P B (Chemotherapy) 0 23 Age P Race White P Others 6 6 Disease stage Local 3 1 P Regional 9 9 Distant 13 7 NED 9 2 Unstaged 4 2 ancy in pain reports. However, this may be due to small sample size (n 63), which may have obscured the relationship. Of concern is the finding that 38% of the patients in the breast clinic reported moderate to severe pain during their visit. This is consistent with our previous studies that show pain as often being under-treated. 1,5 Among the limitations of the study is the possibility that the differences across settings may be due to variation in the method of assessing pain in the two treatment settings. However, it was verified that the method for assessing pain, that is, assessment for the presence of pain (pain now) and the use of the 0 10 numeric rating scale, was consistent in both outpatient treatment settings. Our sample comprises outpatients, and the finding also suggests that these patients may have undertreated pain when at home. An implication is to assess and review patient knowledge of when and how to take home pain medications. In conclusion, although it is expected that some pain may vary on a sporadic or activity-related basis, our findings indicate that the context of the pain report (in this instance treatment setting) may play an important role in patients report of pain. Our findings also point to the need for additional investigations, such as a review of clinic staffs methods of assessing patients, and for educating patients about the need to report pain and take pain medications. A review of documentation practices of pain assessment is also warranted. Acknowledgments We would like to thank the following for their help in reviewing charts: Leaha Beattie-Palmer, BSN, RN; Jane Brown, RN, BSN, CRRN; Margaret Harle, RN, BSN, OCN; Linda McCrory, RN; Beth Johnson, RN; and to Danna Kurtin, PhD, and Yu Ting Huang (Department of Medical Informatics) for providing data. References 1. Cleeland CS, Gonin R, Hatfield AK, et al. Pain and its treatment in outpatients with metastatic cancer. N Engl J Med 1994;330(9): Agency for Healthcare Policy and Research (AHCPR), Public Health Service. Clinical practice guideline: management of cancer pain. AHCPR publication no Rockville, MD: Department of Health and Human Services, National Comprehensive Cancer Network (NCCN). Practice guidelines and outcomes data in oncology. Fourth Annual Conference. Fort Lauderdale, Florida, World Health Organization (WHO). Cancer pain relief. Geneva: WHO, Cleeland CS, Gonin R, Baez L, et al. Pain and treatment of pain in minority patients with cancer. The Eastern Cooperative Oncology Group Minority

5 448 Reyes-Gibby et al. Vol. 25 No. 5 May 2003 Outpatient Pain Study. Ann Intern Med 1997;127(9): Cain JM, Hammes BJ. Ethics and pain management: respecting patient wishes. J Pain Symptom Manage 1994;9(3): Cella DF. Quality of life: concepts and definition. J Pain Symptom Manage 1994;9(3): Cleeland CS. Cancer-related symptoms. Semin Radiat Oncol 2000;10(3): Hammes BJ, Cain JM. The ethics of pain management for cancer patients: case studies and analysis. J Pain Symptom Manage 1994;9(3): Serlin RC, Mendoza TR, Nakamura Y, et al. When is cancer pain mild moderate or severe? Grading pain severity by its interference with function. Pain 1995;61(2): Wang X, Mendoza T, Gao SZ, et al. The Chinese version of the Brief Pain Inventory (BPI-C): its development and use in a study of cancer pain. Pain 1996; (67): Borden EC, Parkinson D. A perspective on the clinical effectiveness and tolerance of interferon-alpha. Semin Oncol 1998;25(1 Suppl 1): Parsons JT, Bova FJ, Million RR. A re-evaluation of split-course technique for squamous cell carcinoma of the head and neck. Int J Radiant Oncol Biol Phys 1980; 6(12): Parsons JT, Thar TL, Bova FJ, et al. An evaluation of split-course irradiation for pelvic malignancies. Int J Radiant Oncol Biol Phys 1980;6(2): Von Roenn JH, Cleeland CS, Gonin R, et al. Physician attitudes and practice in cancer pain management. A survey from the Eastern Cooperative Oncology Group. Ann Intern Med 1993;119(2): Larson PJ, Viele CS, Coleman S, et al. Comparison of perceived symptoms of patients undergoing bone marrow transplant and the nurses caring for them. Oncol Nurs Forum 1993;20(1): Anderson KO, Bradley LA, Turner RA, et al. Observation of pain behavior in rheumatoid arthritis patients during physical examination. Relationship to disease activity and psychological variables. Arthritis Care Res 1992;5(1): Ward SE, Goldberg N, Miller-McCauley V, et al. Patient-related barriers to management of cancer pain. Pain 1993;52(3): Anderson KO, Mendoza TR, Valero V, et al. Minority cancer patients and their providers: pain management attitudes and practice. Cancer 2000;88(8): Anderson KO, McDaniel LK, Young LD, et al. The assessment of pain in rheumatoid arthritis: validity of a behavioral observation method. Arthritis Rheum 1987;30: From Comprehensive Accreditation Manual for Ambulatory Care (CAMAC). Data reviewed on 7/6/ From accessed July 20, Statistical Package for Social Sciences (SPSS) version 10.

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