In 1994, a landmark study of pain among oncology outpatients prompted a host of pain management initiatives.1 More than 18 years later, a recent study among more than 2,000 cancer outpatients has found that “one-third of the patients who had pain or used analgesics received inadequate treatment for pain.” In addition, the investigators reported in the Journal of Clinical Oncology,2 “the odds of inadequate analgesic prescribing are twice as high for minority patients compared with non-Hispanic white patients.”
An editorial accompanying the article asserted, “it should definitely surprise and disappoint us that analgesic prescribing was still inadequate in 33% of these patients.”3 Echoing that disappointment, the study’s lead author, Michael J. Fisch, MD, MPH, told The ASCO Post, “The disappointing thing is seeing patients struggle, seeing what happens to them and their family in the face of undertreated pain or unmanaged pain or underassessed pain problems.” Dr. Fisch is Chair of the Department of General Oncology at The University of Texas MD Anderson Cancer Center in Houston.
Revised Methodology
The previous pain study was led by Charles S. Cleeland, PhD, currently Chair of the Department of Symptom Research at MD Anderson, who also served as a coauthor of the new study.
“Dr. Cleeland’s study only had one point in time,” Dr. Fisch pointed out, when physicians prescribed pain treatment based on patient ratings of the severity of their pain. Some people had argued that a follow-up was needed to reflect the effects of the prescribed pain treatment. “So in this trial, we came back a month later and found that some people got better, but most people were not better.” Dr. Fisch noted.
Of the 3,023 patients identified to be at risk for pain in the recent study, 2,026 (67%) reported having pain or requiring analgesics at initial assessment and were included in the statistical analysis. Among these patients, “670 (33%) were receiving inadequate analgesic prescribing. We found no difference in treatment adequacy between the initial and follow-up visits.” the investigators reported.
Common Solid Tumors
The patients had invasive cancer of the breast (50%), colon/rectum (21%), lung (19%), or prostate (10%). These common solid tumors were chosen because of their dominance in outpatient care. At the initial study visit, 78% of the patients were receiving cancer therapy. The median age was 60 years old.
At the initial study visits and follow-up visits 4 to 5 weeks later, patients completed a 25-item measure of pain, functional interference, and other symptoms. “Providers recorded analgesic prescribing. The pain management index was calculated to assess treatment adequacy,” according to the study report.
Patients were enrolled in the study “at any point in their trajectory of care,” so the initial visit refers to the first visit after patients agreed to participate in the study, not necessarily their first outpatient visit. “Some patients might have been new to the oncologist and some patients might have been there for 10 years for follow-up,” Dr. Fisch noted. “The median time from initial disease diagnosis to study registration was 16 months (range, 0 to 627 months),” according to the study report.
“The investigators were not involved in patient care,” Dr. Fisch explained. “The patient care was being done 90% of the time by community oncologists, but these were community oncologists who are affiliated with the clinical cooperative group system through the Eastern Cooperative Oncology Group (ECOG) and they all knew that they were doing a symptom management study.”
Because of that, some people had expressed concern that there would be a Hawthorne effect, whereby just paying attention to the problem would produce good results. “Our response to that critique was, ‘If only that were the case,’ Dr. Fisch said. “Wouldn’t it be a great world if just paying more attention in the context of the study would make this a much easier issue.”
Predictors of Inadequate Pain Treatment
Close to 25% of the study participants were minority patients (12% black, 9% Hispanic or Latino, 1% Asian, 1% other minority. “Multivariable analysis revealed that the odds of a non-Hispanic white patient having inadequate pain treatment were approximately half those of a minority patient after adjusting for other explanatory variables,” the investigators reported. “Other significant predictors of inadequate pain treatment were having a good performance status, being treated at a site with mostly minority patients, and having nonadvanced disease without concurrent treatment.”
Dr. Fisch said that the doubling of odds of inadequate analgesic prescribing for minority patients could be attributed to a number of factors including “perception, beliefs, concerns about employment, concerns about the cost of opioids, sometimes language, sometimes literacy independent of language, sometimes comorbidity to the extent that minority populations often have other health concerns that make them need to take a large number of medicines,” he continued.
“Probably 25% of the whole cohort was on 10 or more medicines,” he noted. “When you are already on 10 medicines, sometimes you don’t want to be on your 11th or 12th. Or when we prescribe pain medications, we say, ‘Well, you also should take some laxatives with that,’ so then it is 13 or 14.”
The study also found that non-Hispanic white patients are more likely to be undertreated for pain at sites with mostly minority patients. The investigators suggested that system factors, such as opioid availability, could be contributing to the disparity.
Dr. Fisch explained that minority sites may have more limited supplies and might not have an opioid in the dose a physician wants to prescribe. The overall flow of patients through these sites may not be efficient. Locating competent translators may also pose challenges. The nuances of eliciting information from patients “take time and attention to get through,” Dr. Fisch noted.
“If your system isn’t efficient and if you are a little bit strapped, you might not have that patience to drive through all that. So you start being really limited in how you go about doing things because of the system,” he said.
Transition to Primary Care
“Patients with nonadvanced cancers who were not receiving cancer-directed treatment were especially likely to be undertreated for pain,” the study found. These would be patients who are no longer receiving active treatment for cancer and are ready to transition back to primary care. At that point, oncologists “don’t want to pick a fight with you about your pain,” Dr. Fisch said.
A New York Times article about the pain study quoted Dr. Fisch as saying, “A doctor can’t help but wonder, ‘Am I going to be the one responsible for refilling those prescriptions until the end of a patient’s life?’”4 He explained to The ASCO Post that maintaining connections to patients because of a pain prescription may not be “doing them a favor.” Moreover, he said, “it may not be doing the practice a favor,” if following survivors reduces the ability to see new patients on a timely basis.
Planning for ‘Best Case Scenarios’
Physicians and patients “need to be better prepared for the best case scenario that patients with cancer will survive. That means dealing with the whole person, including pain,” Dr. Fisch said. “When I talk to individual patients with cancer, some of them may have a difficult prognosis and sometimes they can only think about the best case scenario, and they refuse to imagine doing end-of-life planning or discussing difficult issues with their family. But sometimes it is the opposite. They do all that planning in case they might die, but they actually haven’t figured out what they’d do if they don’t die.”
He continued, “Some of them do decidedly well, and that is what they were hoping for, but they actually had no plans around that. Then they start to struggle with their survivorship because they had no game plan.”
Physicians can assist with planning by asking patients to think about all the possible scenarios and what will happen if all goes well. “The whole issue of survivorship care plans is very tricky,” Dr. Fisch said. “Ask patients who they want to see for their continued care. Who will accept them? When will they get that first visit? What would that doctor need to know to be prepared? Start to develop it along the way so patients have time, because it might take them 2 months to get an appointment in primary care.”
“This potential gap in pain management could be bridged with improved coordination of care between oncologists and nononcologists,” according to the study report, but Dr. Fisch noted that currently that “happens here and there, but it does not happen pervasively.” Patients who are part of a vertically integrated health system have a better chance of coordinated care, “but most of the patients in this country, when they transition from an oncologist to other providers, are moving across a system of care to providers who have no natural linkage,” he stated. Some providers have forged relationships and figured out how to bridge that gap, “but for the average patient it is very ad hoc and not well worked out. Patients find it very frustrating, and a lot of their needs go unmet.”
Reluctance to Leave Oncologists
Patients may resist suggestions to let their ongoing care be taken over by a primary care physician. A study among 42 cancer survivors found that most “expressed strong preferences to receive follow-up care from their cancer specialists,” and only 38% “believed there was a role for primary care in cancer follow-up.”5
“Patients get very well cared for during their cancer care. They develop relationships with the infusion nurses, the front office staff, other patients, the midlevel provider, and the oncologist. They have a whole network of people who have met various needs for them,” Dr. Fisch commented. “So it is pretty understandable the patient might say, ‘I’ll just stay with what I’ve got.’”
No Fundamental Changes in Pain Treatment
While in many cases, the treatment of cancer is much different than it was when the Cleeland pain study came out, “there is almost nothing of consequence that is different about how we fundamentally should and do approach that patient’s pain,” Dr. Fisch stated. “There are technological things, but implantable pumps and the like have such a little role. They are just not used, or rarely used, and often don’t work. In practical terms, it is the same kind of drugs prescribed in the same kinds of ways.”
Major progress against pain in cancer patients continues to be thwarted by a lack of clinical trials and resources devoted to understanding pain mechanisms and developing analgesics that are nonaddictive, with side effects that do not compromise a patient’s alertness and ability to work and care for children, according to Dr. Fisch.
The study report noted that the Institute of Medicine has called for a “cultural transformation” in the understanding, management, and prevention of pain. For that to happen, “there is going to have to be a determination at both the scientific and clinical levels, along with quality systems and careful pain monitoring. Currently, it is just not prioritized as a problem to attack,” Dr. Fisch said.
“I am not hopeless about it,” he continued. “I think preventing and curing disease will also be a great way to reduce pain. One way to reduce this pain is to succeed in the Moon Shots Program,” he said, referring to MD Anderson’s recently announced initiative to dramatically reduce cancer deaths by allocating an estimated $3 billion over the next 10 years. “But if we end up moving the needle without eradicating the suffering, then we will have a lot of patients with a lot of unmet needs for a while. We have to figure out how to make sure we take good care of people.” ■
Disclosure: Dr. Fisch reported no potential conflicts of interest.
References
1. Cleeland CS, Gonin R, Hatfield AK, et al: Pain and its treatment in outpatients with metastatic cancer. N Engl J Med 330:592-596, 1994.
2. Fisch MJ, Lee J-W, Weiss M, et al: Prospective, observational study of pain and analgesic prescribing in medical oncology outpatients with breast, colorectal, lung, or prostate cancer. J Clin Oncol 30:1980-1988, 2012.
3. Stockler MR, Wilcken NRC: Why is management of cancer pain still a problem? J Clin Oncol 30:1907-1908, 2012.
4. Chen PW: Poor pain control for cancer patients. New York Times. September 20, 2012.
5. Hudson SV, Miller SM, Hemler J, et al: Adult cancer survivors discuss follow-up in primary care: ‘Not what I want, but maybe what I need?’ Ann Fam Med 10:418-427, 2012.
