BACKGROUND The US opioid epidemic has prompted dramatic changes in public attitudes and regulations governing opioid prescribing. Little is known about the experiences of patients with advanced cancer using opioids in the context of the epidemic. METHODS Semistructured interviews of 26 patients with advanced cancer were conducted between May 2019 and April 2020; their experiences self‐managing chronic pain with opioids were evaluated. RESULTS Patients consistently described the negative impact of the opioid epidemic on their ability to self‐manage pain. Negative media coverage and personal experiences with the epidemic promoted stigma, fear, and guilt surrounding opioid use. As a result, many patients delayed initiating opioids and often viewed their decision to take opioids as a moral failure—as “caving in.” Patients frequently managed this internal conflict through opioid‐restricting behaviors (eg, skipping or taking lower doses). Stigma also impeded patient‐clinician communication; patients often avoided discussing opioids or purposely conveyed underusing them to avoid being labeled a “pill seeker.” Patients experienced structural barriers to obtaining opioids such as prior authorizations, delays in refills, or being questioned by pharmacists about their opioid use. Barriers were stressful, amplified stigma, interfered with pain control, and reinforced ambivalence about opioids. CONCLUSIONS The US opioid epidemic has stigmatized opioid use and undermined pain management in individuals with advanced cancer. Interventions seeking to alleviate cancer pain should attend to the multiple, negative influences of the opioid crisis on patients' ability to self‐manage. LAY SUMMARY Patients with advanced cancer suffer from significant pain and frequently receive opioids to manage their pain. Of the 26 patients with advanced cancer interviewed, the majority of patients experienced stigma about their opioid use for cancer pain management. All patients felt that the opioid epidemic fostered this stigma. Several struggled to use opioids for pain because of this stigma and the logistical complications they experienced with pharmacies and insurance coverage. Many were afraid to share their concerns about opioids with their providers.
Purpose: Patient education is critical for management of advanced cancer pain, yet the benefits of psychoeducational interventions have been modest. We used mobile health (mHealth) technology to better meet patients' needs.Methods: Using the Agile and mHealth Development and Evaluation Frameworks, a multidisciplinary team of clinicians, researchers, patients, and design specialists followed a four-phase iterative process to develop comprehensive, tailored, multimedia cancer pain education for a patient-facing smartphone application. The target population reviewed the content and provided feedback. Results:The resulting application provides comprehensive cancer pain education spanning pharmacologic and behavioral aspects of self-management. Custom graphics, animated videos, quizzes, and audio-recorded meditations complemented written content. Computable algorithms based upon daily symptom surveys were used to deliver brief, tailored motivational messages that linked to more comprehensive teaching. Patients found the combination of pharmacologic and behavioral support to be engaging and helpful. Conclusion:Digital technology can be used to provide cancer pain education that is engaging, and tailored to individual needs. A replicable interdisciplinary and patient-centered approach to intervention development was advantageous. MHealth interventions may be a scalable approach to improve cancer pain. Frameworks that merge software and research methodology can be useful in developing interventions.
Pain continues to be a primary and challenging symptom of cancer. We sought to use mobile health (mHealth) technology to tailor psycho-education to better meet patients' needs. Using the Agile and mHealth Development and Evaluation Frameworks, a multidisciplinary team of clinician researchers, patients, and software and design specialists followed a four-phase iterative process to develop multi-media cancer pain education within a patient-facing smartphone application. The resulting application pairs comprehensive cancer pain education spanning pharmacologic and behavioral support with medication hosting and symptom surveys. MHealth enables creative, interactive educational approaches utilizing written text, graphics, animated videos, quizzes, audiorecordings, and motivational messages. Computable algorithms were used to tailor content to patients' symptom surveys. Cancer patients found the materials to be useful. By bridging technology and research methodology, we incorporated theory, evidence, and patient feedback to create a tailored and scalable educational intervention to support cancer pain selfmanagement.
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