Patient-generated health data (PGHD), or health-related data gathered from patients to help address a health concern, are used increasingly in oncology to make regulatory decisions and evaluate quality of care. PGHD include self-reported health and treatment histories, patient-reported outcomes (PROs), and biometric sensor data. Advances in wireless technology, smartphones, and the Internet of Things have facilitated new ways to collect PGHD during clinic visits and in daily life. The goal of the current review was to provide an overview of the current clinical, regulatory, technological, and analytic landscape as it relates to PGHD in oncology research and care. The review begins with a rationale for PGHD as described by the US Food and Drug Administration, the Institute of Medicine, and other regulatory and scientific organizations. The evidence base for clinic-based and remote symptom monitoring using PGHD is described, with an emphasis on PROs. An overview is presented of current approaches to digital phenotyping or device-based, real-time assessment of biometric, behavioral, self-report, and performance data. Analytic opportunities regarding PGHD are envisioned in the context of big data and artificial intelligence in medicine. Finally, challenges and solutions for the integration of PGHD into clinical care are presented. The challenges include electronic medical record integration of PROs and biometric data, analysis of large and complex biometric data sets, and potential clinic workflow redesign. In addition, there is currently more limited evidence for the use of biometric data relative to PROs. Despite these challenges, the potential benefits of PGHD make them increasingly likely to be integrated into oncology research and clinical care.
To be effective, stress management interventions for Latinas receiving chemotherapy may necessitate more attention from an interventionist, delivery of the intervention over a longer interval, and/or a group-based format.
Context: Cancer-related pain is a common symptom that is often treated with opioids. However, legislation aimed at containing the opioid crisis, coupled with public fears about opioid risks, may contribute to opioid stigma in cancer patients. To our knowledge, no prior research has examined opioid stigma and stigma-related behavior in this population. Objective: To describe opioid use, including reasons for use and over-and under-use behavior; characterize opioid stigma; and identify potentially maladaptive associated behaviors. Methods: Participants were 125 adults undergoing active cancer treatment being seen at the Moffitt Supportive Care Medicine Clinic. Patients completed a brief, anonymous questionnaire evaluating opioid use, opioid stigma, and stigma-related behaviors. Results: Patients were primarily women (65%) aged 45-64 years (49%), most commonly diagnosed with breast (23%) and hematologic (15%) cancer. Among patients who reported opioid use (n=109), the most common reason for use was pain relief (94%), followed by improved sleep (25%). A subset of patients reported using less (13%) or more (8%) opioid medication than advised. Opioid stigma was endorsed by 59/97 patients prescribed opioids (61%), including fear of addiction (36%), difficulty filling prescriptions (22%), and awkwardness communicating with providers (15%). Stigma-related behaviors were endorsed by 28 (29%) of respondents prescribed opioids, with "taking less opioid medication than needed" as the most commonly endorsed behavior (20%).
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