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PURPOSE: Novel distress screening approaches using electronic patient-reported outcome (ePRO) measurements are critical for the provision of comprehensive quality community cancer care. Using an ePRO platform, the prevalence of psychosocial factors (distress, post-traumatic growth, resilience, and financial stress) affecting quality of life in ovarian cancer survivors (OCSs) was examined. METHODS: A cross-sectional OCS sample from the National Ovarian Cancer Coalition-Illinois Chapter completed web-based clinical, sociodemographic, and psychosocial assessment using well-validated measures: Hospital Anxiety/Depression Scale-anxiety/depression, Post-traumatic Growth Inventory, Brief Resilience Scale, comprehensive score for financial toxicity, and Functional Assessment of Cancer Therapy-Ovarian (FACT-O/health-related quality of life [HRQOL]). Correlational analyses between variables were conducted. RESULTS: Fifty-eight percent (174 of 300) of OCS completed virtual assessment: median age 59 (range 32-83) years, 94.2% White, 60.3% married/in domestic partnership, 59.6% stage III-IV, 48.8% employed full-time/part-time, 55.2% had college/postgraduate education, 71.9% completed primary treatment, and median disease duration 6 (range < 1-34) years. On average, OCS endorsed normal levels of anxiety (mean ± standard deviation = 6.9 ± 3.8), depression (4.1 ± 3.6), mild total distress (10.9 ± 8.9), high post-traumatic growth (72.6 ± 21.5), normal resilience (3.7 ± 0.72), good FACT-O-HRQOL (112.6 ± 22.8), and mild financial stress (26 ± 10). Poor FACT-O emotional well-being was associated with greater participant distress (P <.001). Partial correlational analyses revealed negative correlations between FACT-O-HRQOL and anxiety (r = –0.65, P <.001), depression (r = –0.76, P <.001), and total distress (r = –0.92, P <.001). Yet, high FACT-O-HRQOL was positively correlated with post-traumatic coping (r = 0.27; P =.006) and resilience (r = 0.63; P <.001). CONCLUSION: ePRO assessment is feasible for identification of unique psychosocial factors, for example, financial toxicity and resilience, affecting HRQOL for OCS. Future investigation should explore large-scale, longitudinal ePRO assessment of the OCS psychosocial experience using innovative measures and community-based advocacy populations. ePRO assessment is feasible for the identification of unique psychosocial factors, financial toxicity, and resilience, which affect QOL among a community-based ovarian cancer survivor population. [ABSTRACT FROM AUTHOR]

PURPOSE Advanced cancer patients (ACP) hope to receive significant therapeutic benefit from phase I trials despite terminal disease and presumed symptom burdens. We examined associations between symptom burdens and expectations of therapeutic benefit for ACP and spousal caregivers (SC) during phase I trials. PATIENTS AND METHODS A prospective cohort of ACP-SC enrolled in phase I trials was assessed at baseline and one month using symptom burden measures evaluating depression, state-trait anxiety, quality of life, global health, post-traumatic coping, and marital adjustment. Interviews evaluated expectations of benefit. RESULTS Fifty-two phase I ACP and 52 SC (N = 104) were separately assessed and interviewed at baseline and one month. Total population demographics included the following: median age 61 years (28-78), 50% male, 100% married, 90% White, and 46% ≥ college education. At T1, ACP reported symptoms of mild state anxiety, mild trait anxiety, poor global health, and quality of life. SC reported moderate state and mild trait anxiety and good global health with little disability at baseline. State anxiety was a significant predictor of ACP expectations for phase I producing the following therapeutic benefits: stabilization (P = .01), shrinkage (P < .01), and remission (P = .04). Regression analyses also revealed negative associations between SC expectation for stabilization and SC anxiety: state (P = .01) and trait (P = .02). ACP quality of life was also negatively associated with SC expectations for stabilization (P = .02) and shrinkage (P = .01). CONCLUSION Anxiety, both state and trait, impacts couples' beliefs regarding the likelihood of therapeutic benefit from phase I trial participation. [ABSTRACT FROM AUTHOR]

Purpose: Advanced cancer patients (ACPs) who participate in phase I clinical trials often report a less-than-ideal understanding of the required elements of informed consent (IC) and unrealistic expectations for anticancer benefit and prognosis. We examined phase I clinical trial enrollment discussions and their associations with subsequent ACP understanding. Methods: Clinical encounters about enrollment in phase I trials between 101 ACPs and 29 oncologists (principal investigators [PIs] and fellows) at three US academic medical institutions were recorded. The Roter Interaction Analysis System was used for analysis. ACPs completed follow-up questionnaires to assess IC recall. Results: PIs disclosed the following phase I IC elements to ACPs in encounters: trial purpose in 40%; specific physical risks in 60%; potential specific medical benefits gained by trial participation (eg, disease stabilization) in 48.2%; and alternatives to phase I trial participation in 47.1%, with 1.1% of encounters containing palliative and 2.3% hospice information. PIs provided ACP-specific prognoses in 29.0% of encounters but used precise terms of death in only 4.7% and terminal in 1.2%. A significant association existed between PI disclosure of the trial purpose as dosage/toxicity, and ACPs subsequently correctly recalled trial purpose versus PIs who did not disclose it (85% v 13%; P <.05). Conclusion: Many oncologists provide incomplete disclosures about phase I trials to ACPs. When disclosure of certain elements of IC occurs, it seems to be associated with better recall, especially with regard to the research purpose of phase I trials. [ABSTRACT FROM AUTHOR]

PURPOSE Little is known about physicians' attitudes and knowledge regarding the health care needs of childhood cancer survivors (CCS). We sought to obtain pediatric cancer physicians' self-reported attitudes and knowledge regarding this population. METHODS A mailed survey was sent to 1,159 pediatric oncologists in the United States. Results A total of 655 surveys were returned (ie, 57% response rate). Median age of respondents was 47 years (range, 31 to 82 years); 57% were men. Respondents practiced for a median 14 years (range, 1 to 50 years) and reported seeing a median of 21 patients per week (range, 0 to 250 patients per week). When comfort levels in caring for CCS were described (ie, 1 = very uncomfortable; 7 = very comfortable), respondents were most comfortable with survivors < or = 21 years (mean +/- standard deviation, 6.2 +/- 1.3 level), were less comfortable (5.0 +/- 1.5 level) with those older than 21 years but less than 30 years old, and were uncomfortable with CCS > or = 30 years (2.9 +/- 1.7 level). In response to a clinical vignette of a 29-year-old woman treated with mantle radiation for Hodgkin's lymphoma at 16 years of age, and on the basis of available guidelines, 34% of respondents did not appropriately recommend yearly breast cancer surveillance; 43% of respondents did not appropriately recommend cardiac surveillance; and 24% of respondents did not appropriately recommend yearly thyroid surveillance. Those with greater self-reported familiarity with available long-term follow-up (LTFU) guidelines (odds ratio [OR], 1.33; 95% CI, 1.15 to 1.54) and with receipt of training in the care of CCS (OR, 1.73; 95% CI, 1.18 to 2.52) were more likely to have answered all three questions correctly. CONCLUSION Pediatric oncologists express a range of preferences with regard to LTFU of CCS. Many appear unfamiliar with LTFU surveillance guidelines.