Revisiting Patient-Related Barriers to Cancer Pain Management in the Context of the US Opioid Crisis

Kristine Kwekkeboom; Ronald C. Serlin; Sandra E. Ward; Thomas W. LeBlanc; Adeboye Ogunseitan; James Cleary


Pain. 2021;162(6):1840-1847. 

In This Article


This study yielded 3 important findings. First, cancer patients' concerns about the potentially harmful effects of opioids have increased over the past 20 years. Second, the relationships between patients' beliefs about the use of opioid analgesics for pain management and pain severity, pain interference, and adequacy of analgesic use remain unchanged. Third, the proportion of patients with cancer with inadequate analgesia remains unacceptably high.

Patient-related barriers to pain management were worse in the current sample as compared with those reported in previous studies of cancer patients with pain, published since 2002. The relative sizes of the observed differences are large, approaching nearly 1 point on the 6-point BQ-II scale. Although minimally important differences have not been identified for the BQ-II, a cumulative 11.6% increase in patient-related barriers to pain management, and 10.5% increase in concerns about harmful effects of pain medicines are substantial, and likely clinically significant, especially among persons with other risk factors for poor pain management. An obvious potential explanation for the increased concern is news and social media coverage about misuse of opioids, emphasizing the risk of becoming addicted to prescription pain medications, the potential of transition from legal to illegal drugs, and associated destructive and deadly consequences.[5,25] Misuse of opioid analgesics by persons without pain is a reality, and patients with cancer may have personal connections to family members, friends, or acquaintances who misused or know someone who misused pain medications. These stories likely influence cancer patients' beliefs about the safety and potential hazards of opioids. Furthermore, negative public perception of persons who use prescription opioids and stigmatizing language in discussions of opioid use[26,50] may lead patients with cancer to believe that use of prescription analgesics is not socially acceptable.

Although harmful effects and total barriers scores have increased over the past 2 decades, the relationships between these beliefs and pain severity, pain interference and adequacy of analgesic use remain unchanged. Greater barriers scores are associated with higher pain severity, more pain interference, and less adequate use of analgesics, but the correlations remain relatively small. It is possible that patients may continue to use pain medications despite their beliefs, with these concerns falling to a lower priority as pain becomes more severe. Of course, pain may be managed in ways other than through the use of analgesic medications. Oncologists may be recommending nonpharmacologic interventions (eg, meditation, massage, and acupuncture) to reduce pain severity and enhance the patient's ability to tolerate pain.[33]

Although BQ scores have increased over time, we do not see an impact on the number of persons who use inadequate potency of medication for their pain level (ie, PMI scores). Although the proportion of patients receiving appropriate classes of medications for their pain has not changed, we do not know if increased concerns about harmful effects of pain medications have reduced the doses or frequency of analgesic use. It is also possible that patients with cancer may believe that opioid use is dangerous for others, particularly those without cancer, but is safe for themselves. Such beliefs would be consistent with CDC guidelines for prescribing opioids for chronic pain, which are intended to direct care "outside of active cancer treatment, palliative care, and end of life care,"[12] and may reflect good patient education on the part of oncology clinicians engaged in pain management.[3] Further study of these questions is needed.

The most sobering finding of this analysis, however, is that despite 20 years of advances in science and clinical practice, the adequacy of analgesic pain management has not improved. In the current sample, 40% of patients with pain related to advanced or metastatic disease did not use adequate levels of analgesics given the severity of their pain. Recent data show that national opioid prescribing rates by oncologists and nononcologists have decreased by nearly 20% from 2013 to 2017,[20] suggesting that attention to inappropriate opioid prescribing for noncancer patients may be inadvertently affecting pain care for patients with cancer. In 2 single-site studies in a Southern US cancer center, investigators documented downward trends in daily opioid doses before, during, and after palliative care hospitalization over the period of 2008 to 2014,[53] and similar steady decreases in opioid prescribing patterns by oncologists referring patients to the outpatient palliative care service from 2010 to 2015.[16] The authors suggested that patient and clinician awareness of potentially fatal adverse events related to long-term opioid use might have contributed to decreased opioid prescribing and underuse with inadequate pain control. Inadequate analgesic use is also explained by sociodemographic variables such as gender, race, and health literacy, as well as system-level barriers including insurance requirements and burdens obtaining analgesics,[36] which were not evaluated in the current study.

There are several limitations to note in our approach. First, our comparison over time is based on previously published studies, not on original data from those studies Therefore, we had to rely on the summary statistics available in published reports. Second, participants in the different studies may differ in meaningful ways on measured or unmeasured variables. Third, all participants in the current study were recruited from academic medical centers and through a palliative care cooperative group structure, meaning they may have received more high quality, state-of-the-art pain care than the average patient with cancer in the United States. Furthermore, our participants lacked racial and ethnic diversity and were relatively well educated, factors that might improve the care they received. Fourth, the validity of the PMI has been debated because it estimates analgesic potency without considering dose. It is possible that patients with severe pain could use high doses of weak opioid that are equianalgesic to low doses of a strong opioid. Finally, a substantial proportion of eligible participants (43%) declined study participation. Persons who declined may have had either higher or lower barriers scores and better or worse pain management; it is not possible to determine which way a bias may have operated.

The American Medical Association Pain Care Task Force[2] has recently emphasized that the US opioid crisis is no longer caused by prescription medications, but rather by illegal drugs (eg, heroin and fentanyl analogs). Accordingly, they encouraged revisions to the CDC Guidelines to ensure patients have access to evidence-based pain care that includes opioids for pain management, along with efforts to reduce system—(insurance, pharmacy) and patient-related barriers associated with obtaining and using opioids for pain management. As this course correction occurs, investigators need to clarify causes of changing beliefs about analgesic medications, perhaps using a mixed methods design to capture participants' perceptions of factors that shape their beliefs, and also measure changes in analgesic use patterns (eg, reduced dosages and frequency). The content of public health messaging about opioids should be evaluated in regard to cancer patients' beliefs, with consideration of more nuanced messaging to emphasize the importance and essential role of opioids in controlling pain in advanced cancer. Future investigators should recruit diverse samples to identify changes in pain management beliefs and practices in persons at high risk for pain management disparities. There is a clear need for continued development and testing of clinical interventions that address patient-related and system-related barriers to improve pain management, including the use of effective nonopioid analgesics, interventional procedures, and other complementary approaches.