Opioid 'Stigma' Keeping Cancer Patients in Pain?

By Contributing Writer - June 12, 2019

How much is too much when it comes to opioid medications for pain – and which patients should legitimately have access to them?  These are important questions for patients being treated for cancer and the physicians who treat them. They’re also headlines in the news and issues being discussed by government agencies.  This week, the U.S. Food and Drug Administration is holding meetings about how high-dose opioids are used and their associated safety concerns.  In 2016, the Centers for Disease Control and Prevention developed opioid prescribing guidelines for use with chronic pain in an effort to stem the tide of abuse.  Perhaps that guidance was taken too seriously by some clinicians, as earlier this year the CDC issued a rare, direct clarification of the guidelines for clinicians – including those dealing with patients undergoing cancer treatment.

Dr. Hailey Bulls
Dr. Hailey Bulls, Health Outcomes and Behavior

“Coming from a non-cancer background, I always thought of cancer pain as something separate and protected (from the discussions of opioid issues in the news),” said Dr. Hailey Bulls, who will complete a post-doctoral fellowship in behavioral oncology at Moffitt Cancer Center this July. Bulls said she was drawn for the opportunity to apply her background in psychology and its use with non-cancer pain to the treatment of cancer pain. But she soon heard stories from clinicians about the challenges their cancer patients face when dealing with opioid pain management:  fears of addiction, difficulty or judgmental reactions when filling prescriptions and loved ones pressuring them about opioid prescriptions.  One patient, Bulls said, even told of a loved one flushing their pain medications down the toilet because of their fears about opioid medication use.

At the heart of these challenges is a stigma attached to opioid use, even among cancer patients whose pain legitimately indicates its use. “So I went to the literature, and there wasn't a lot of specific formal literature about opioid stigma,” said Bulls.  While patient’s addiction fears about opioids have been written about, “when it came to how patients internalize messaging around opioids – particularly in light of the opioid crisis – or how they’re relating to their family members about the need for opioids for their cancer pain, I just wasn’t seeing much about it.”

That led Bulls to launch a study that surveyed 125 cancer patients in active treatment who were also being seen at Moffitt’s Supportive Care Medicine clinic. They were asked to complete a brief, anonymous questionnaire evaluating opioid use, opioid stigma, and stigma-related behaviors. Of the 97 respondents who were currently using opioids, more than 60% said they felt stigma associated with the use of these powerful pain medications.  Almost 30% reported that this stigma led them to alter their behavior, mostly by taking less medication than needed (20%).  Difficulty filling prescriptions (22%) and awkwardness in talking about the issue with their health care providers (15%) were also reported.

While it’s a small study population, Bulls said one point was made clear. “The biggest takeaway here is that this is a problem that’s impacting cancer pain management, and that we need more research to figure out how to manage it effectively,” she explained. “Because this was such a small study,  I think we may have only hit the tip of the iceberg.”

Bulls is hoping to build off of her initial research with further studies: first, to interview cancer patients about how they specifically experience opioid stigma and then to use that information in crafting targeted interventions. She’s also planning to develop a standard tool for use in the research and clinic setting. “It would be great to have some kind of brief screener, where we could say - this patient has some real concerns about using opioids for their cancer pain, and now clinicians are aware and can address it directly,” she explained. “It would take some of the burden off of patients to bring up this potentially uncomfortable topic in face-to-face meetings with their health care providers.”


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