When Patients Take Charge of Opioids: Self-Management Concerns and Practices Among Cancer Outpatients in the Context of Opioid Crisis

Abstract [from journal]

Context: With concerns about opioid prescribing practices prominent in the professional and lay literature, there is less focus on patients’ self-management of opioids for cancer pain and potential safety risks.

Objectives: To investigate reports of opioid self-management practices and concerns among patients undergoing active cancer treatments—a group excluded from the scope of most policy initiatives on prescription opioids.

Methods: This sequential multimethod study employed Freelisting (n=65) and open-ended semi-structured interviews with a racially-diverse subgroup (n=32). Adult ambulatory patients with solid malignancies or multiple myeloma, and pain (> 4 on a scale of 0-10) were recruited from an urban National Cancer Institute-designated cancer center in Philadelphia. Freelists were analyzed using consensus analysis and semi-structured interview data were analyzed using thematic analysis.

Results: In Freelisting, “pain relief” emerged as the primary term in relation to taking pain medications preceding “addiction” concerns. In interviews, patients described several heuristics and some potentially unsafe practices to minimize opioid use to a self-defined “normal”. These included, reducing opioid dose by cutting pills; self-tapering off opioids; using extended-release/long-acting opioids on an as-needed basis; mixing over-the-counter, non-opioid analgesics; and using illicit drugs to avoid “harder medicines” (opioids). Many patients preferred non-opioid treatments for pain but invariably faced access barriers. Some described assuming stewardship of their prescribed opioids and felt that oncology clinicians are quick to prescribe opioids without providing workable alternatives.

Conclusions: Risks related to self-management of opioids among cancer outpatients, including potential overdose risks, need urgent attention. Interventions are needed for improving clinician-patient communication, patient education, safety, and access to effective non-opioid alternatives.