Oncology patient preferences in reporting on symptoms

Background:Collecting patient reported outcomes (PROs) in oncology clinical trials is becoming increasingly important. However, there is limited consensus on the most appropriatefrequency of PRO administration in oncology trials. The aim of this preliminary study is to examine the perspective of participants with a cancer diagnosis on the importance of completing PROs and to identify at what frequency participants prefer to report on their cancer-related symptoms.Methods:166 participants with a self-reported cancer diagnosis completed a multiple-choice online survey regarding perceptions of symptom importance and reporting preferences.Results:When asked about the benefit of reporting oncology-related symptoms daily, 44% of participants indicated there would be “very much” a benefit, 29% indicated there would be “quite a bit” of benefit, and 17% indicated there would be “somewhat” of a benefit. When asked about how frequently they would prefer to report symptoms, 41% of participants preferred “as they occur,” 36% preferred “once a day,” 18% preferred “once a week,” 4% preferred “twice a day,” and 1% preferred “every 4 hours”. Conclusions: PROs in oncology clinical research are most often collected at weekly, monthly, or longer intervals; however, meaningful fluctuations in cancer-related symptoms can occur more frequently. While concerns regarding patient burden are often raised to support infrequent reporting, these data suggest that participants would like to report symptoms with greater frequency, as episodic and daily reporting options were most popular. Based on these data, more frequent PRO data capture is not only feasible but perceived as important by individuals with cancer

Honesty in reporting suicidal ideations and behaviors in Alzheimer’s disease, mild cognitive impairment, and dementias

Background:Detection of patients’ suicidal ideations and behaviors (SIB) is critical to patient safety. It is important to consider the needs, abilities and propensity for honesty in reporting SIB in populations with compromised cognitive abilities. We surveyed patients with compromised cognitive abilities to determine if they feel they would report SIB and the conditions underwhich they would be honest in reporting SIB?Methods:Patients reporting diagnoses such as Alzheimer’s disease (AD), mild cognitive impairment (MCI) or other dementias completed online surveys. Participants were asked their likelihood for honesty, preferences and comfort when answering questions on SIB in-person and using electronic self-report.Results:73 patients with AD, MCI or other dementias, 95% reported they were likely to report SIB honestly electronically and 92% would be honest with a health care provider (HCP). However, 96% would be honest in-person with an HCP they knew but less than 88% said they would be honest if they didn’t know the HCP. Conclusions: These data suggest that patients with cognitive conditions may be more likely to reportSIB truthfully using electronic self-report than a clinical face to face interview but that either form of reporting is an effective methodology for obtaining honest responses about SIB. Taking the FDA guidance on suicidality and the potential for cognitive decrements in this population, multiple tools for assessing depression and SIB should be implemented when treating or working this population