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ObjectiveEnhancing cancer patients’ sense of control can positively impact psychological well-being. We developed and assessed the psychometric properties of Valued Outcomes in the Cancer Experience (VOICE)TM, a measure of patients’ perceived control over key personal priorities within their cancer experience.MethodsVOICE construction and testing were completed in three phases with separate participant samples: (1) item generation and initial item pool testing (N = 459), (2) scale refinement (N = 623), and (3) confirmatory validation (N = 515).ResultsA 21-item measure was developed that captures cancer patients’ sense of control in seven key domains: (1) Purpose and Meaning, (2) Functional Capacity, (3) Longevity, (4) Quality Care, (5) Illness Knowledge, (6) Social Support, and (7) Financial Capability. VOICE demonstrated adequate internal consistency (full-scale α = 0.93; factor α = 0.67–0.89) and adequate to strong convergent and discriminatory validity.Significance of resultsVOICE measures cancer patients’ perceived control across a diverse range of personal priorities, creating a platform for elevating patient perspectives and identifying pathways to enhance patient well-being. VOICE is positioned to guide understanding of the patient experience and aid the development and evaluation of supportive care interventions to enhance well-being.

Sharing data is critical to advancing science, improving health, and creating advances in the delivery of health care services. The value of sharing data for cancer research purposes is well established, and there are multiple initiatives under way that address this need. However, there has been less focus on cancer patient perspectives regarding the sharing of their health information for research purposes. This study examined cancer patient perspectives on the sharing of de-identified health data for research purposes including both data from medical records and mobile applications. This cross-sectional study used survey methodology to collect data from cancer patients/survivors (N = 677). Overall, we found that participants were largely willing (71%) to share de-identified medical data and were most motivated (88%) by a desire to help other cancer patients. Patients were less likely to be comfortable sharing mobile application data (34%). It is vital that we understand patient perspectives on data sharing and work with them as partners, valuing their unique contributions, and attending to their preferences.

Background Long-term use of adjuvant endocrine therapy (AET) among women with early-stage, hormone receptor-positive breast cancer significantly reduces the risk of hospitalizations, cancer recurrence, and mortality. AET is associated with adverse symptoms that often result in poor adherence. A web-enabled app offers a novel way to communicate and manage symptoms for women on AET. In a region with significant racial disparities in breast cancer outcomes, our study tests the impact of a web-enabled app that collects and transmits patient-reported symptoms to healthcare teams to facilitate timely and responsive symptom management on medication adherence. Methods In this randomized controlled trial, we randomize 300 patients initiating AET to one of three arms: 1) an “App” group (n = 100) that receives weekly reminders to use the THRIVE study app; 2) an “App+Feedback” group (n = 100) that receives weekly reminders and tailored feedback based on their use of the app; or 3) a “Usual Care” group (n = 100) that receives usual care only. Participants are stratified by race: 50% White and 50% Black. The duration of the intervention is six months following enrollment, and outcomes are assessed at 12-months. The primary outcome is adherence, which is captured using an electronic monitoring pillbox. Secondary outcomes include symptom burden, quality of life, self-efficacy for managing symptoms, and healthcare costs. We also evaluate the impact of the intervention on racial disparities in adherence. Data are derived from three sources: electronic health record data to capture treatment changes, healthcare utilization, and health outcomes; self-report survey data related to adherence, symptom burden, and quality of life; and an electronic medication monitoring device that captures adherence. Discussion A successful web-enabled intervention could be disseminated across systems, conditions, and populations. By evaluating the impact of this intervention on a comprehensive set of measures, including AET adherence, patient outcomes, and costs, our study will provide valuable and actionable results for providers, policy makers, and insurers who strive to achieve the “Triple Aim” – reduce costs while improving health outcomes and the patient care experience. Trial registration NCT03592771. Prospectively registered on July 19, 2018.

Purpose Unintentional weight loss (UWL) is a prevalent problem in people with cancer and is associated with poorer psychosocial outcomes. A gap exists in understanding whether and how perceived and/or weight status impacts experiences of UWL. Thus, we sought to examine subjective experiences of UWL in people with cancer, and whether perceived and/or actual weight status impacts these experiences. Methods Participants were recruited through Cancer Support Community’s Cancer Experience Registry® and related networks. Participants completed an online survey that included the FAACT Anorexia-Cachexia subscale, and 19 items that captured six themes related to “beliefs and concerns” (positive beliefs, psychosocial impact, physical impact, cancer outcomes, self-esteem, relationships with others). Perceived weight status (PWS) was assessed using a single item. Body mass index (BMI) was calculated using self-reported weight and height measurements. Results Of 326 respondents, 114 reported experiencing UWL. Over one-third misperceived their weight, with 29% perceiving weight status as below their BMI status. UWL in those with perceived weight status of overweight/obese was associated with positive beliefs. However, being underweight by BMI or perceiving oneself as underweight were both associated with greater concerns about weight loss. Perceived weight status of underweight compared to normal or overweight/obese weight status was associated with poorer psychosocial well-being, personal control, self-esteem, and relationships with others. Conclusion In people with cancer, perceived weight status, rather than BMI, had greater impact on negative “beliefs and concerns” about UWL. Findings suggest assessment of both perceived and actual BMI to address the impact of UWL on psychosocial wellbeing.

Purpose To facilitate access to and provision of psychosocial care to cancer patients in the community, the Cancer Support Community (CSC) developed CancerSupportSource® (CSS), an evidence-based psychosocial distress screening program. The current study examined the psychometric properties and multi-dimensionality of a revised 25-item version of CSS, and evaluated the scale’s ability to identify individuals at risk for clinically significant levels of depression and anxiety. Methods CSS development and validation were completed in multiple phases. Exploratory factor analysis was completed with 1436 individuals diagnosed with cancer to examine scale dimensionality, and nonparametric receiver operating characteristic (ROC) curve analyses were used to determine scoring thresholds for depression and anxiety risk scales. Internal consistency reliability and convergent and discriminant validity were also examined. Confirmatory factor analysis and intraclass correlation coefficients were subsequently calculated with a separate sample of 1167 individuals to verify the scale factor structure and examine test–retest reliability. Results Five factors were identified and confirmed: (1) emotional well-being, (2) symptom burden and impact, (3) body image and healthy lifestyle, (4) health care team communication, and (5) relationships and intimacy. Psychometric evaluation of the total scale and factors revealed strong internal consistency reliability, test–retest reliability, and convergent and divergent validity. Sensitivity of CSS 2-item depression and 2-item anxiety risk scales were .91 and .92, respectively. Conclusions Results indicate that CancerSupportSource is a reliable, valid, multi-dimensional distress screening program with the capacity to screen for those at risk for clinically significant levels of depression and anxiety.

Objectives Healthcare expenditures in the United States continue to grow; to control costs, there has been a shift away from volume-focused care to value-based care. The incorporation of patient perspectives in the development of value-based healthcare is critical, yet research addressing this issue is limited. This study explores awareness and understanding of patients with cancer about the quality-adjusted life year (QALY), as well as their perspectives regarding the use of the QALY to measure value in healthcare. Methods This cross-sectional study used survey methodology to explore patient awareness, understanding, and perspectives on the QALY. A total of 774 patients with cancer and survivors completed this survey in June and July of 2017. Quantitative and qualitative analyses were conducted. Results Results showed that there is limited awareness of the QALY among patients with cancer and survivors and minimal understanding of how the QALY is used. Only one quarter of respondents believed that the QALY was a good way to measure value in healthcare. Some participants (5%) stated that the QALY could be personally helpful to them in their own decision making, indicating the possible usefulness of the QALY as a decision aid in cancer care. Nevertheless, participants expressed concern about other decision makers using the QALY to allocate cancer care and resources and maintained a strong desire for autonomy over personal healthcare choices. Conclusions Although participants believed that the QALY could help them make more informed decisions, there was concern about how it would be used by payers, policymakers, and other decision makers in determining access to care. Implications for policy and research are discussed.

Background:Oral therapies are increasingly common in oncology care. However, data are lacking regarding the physical and psychologic symptoms patients experience, or how these factors relate to medication adherence and quality of life (QoL).Materials and Methods:From December 2014 through August 2016, a total of 181 adult patients who were prescribed oral targeted therapy or chemotherapy enrolled in a randomized study of adherence and symptom management at Massachusetts General Hospital Cancer Center. Patients completed baseline assessments of adherence with electronic pill cap, QoL, symptom severity, mood, social support, fatigue, and satisfaction with clinicians and treatment. Relationships among these factors were examined using Pearson product-moment correlations and multivariable linear regression.Results:At baseline, the mean electronic pill cap adherence rate showed that patients took 85.57% of their oral therapy. The most commonly reported cancer-related symptoms were fatigue (88.60%), drowsiness (76.50%), disturbed sleep (68.20%), memory problems (63.10%), and emotional distress (60.80%). Patients who reported greater cancer-related symptom severity had lower adherence (r= −0.20). In a multivariable regression, greater depressive and anxiety symptoms, worse fatigue, less social support, lower satisfaction with clinicians and treatment, and higher symptom burden were associated with worse QoL (F[10, 146]=50.53; adjustedR2=0.77). Anxiety symptoms were most strongly associated with clinically meaningful decrements in QoL (β= −7.10; SE=0.22).Conclusions:Patients prescribed oral therapies struggle with adherence, and cancer-related symptom burden is high and related to worse adherence and QoL. Given perceptions that oral therapies are less impairing, these data underscore the strong need to address adherence issues, symptom burden, and QoL for these patients.

Background: CancerSupportSource (CSS) is a 25-item distress screening tool implemented at community-based cancer support organizations and hospitals nationwide. CSS assesses distress over 5 domains: (1) emotional concerns (including depression and anxiety risk screening subscales), (2) symptom burden, (3) body and healthy lifestyle, (4) healthcare team communication, and (5) relationships. This study developed a short form of CSS and examined its psychometric properties. Methods: 2,379 cancer survivors enrolled in the Cancer Support Community’s Cancer Experience Registry. Participants provided demographic and clinical background and completed CSS-25 and PROMIS-29, a measure of health-related quality of life. Item reduction was conducted with a subsample of 1,435 survivors and included external item quality (correlations between items and PROMIS-29 scales), internal item quality (inter-item and inter-factor correlations, factor loadings and structure, and item communalities from an exploratory factor analysis of CSS-25), and professional judgement (ranking/prioritization of items by CSS-25 developers, accounting for theoretical and practical implications). Pearson correlations and confirmatory factor analysis were conducted on a separate subsample of 944 survivors to corroborate psychometric properties and dimensionality of the shortened scale. Results: Scale refinement resulted in a 15-item short form of CSS (CSS-15). At least 1 item from each of the 5 CSS-25 domains was retained to preserve multidimensionality, including anxiety and depression risk screening subscale items. Additionally, 1 item about tobacco/substance use was kept due to clinical significance for risk assessment. In confirmatory factor analysis, the model explained 59% of the variance and demonstrated good fit (RMSEA=0.068, 90% CI=0.061–0.075; SRMR=0.033; CFI=0.959; χ2(68)=334.75, PPrs=−.65–.75, psα=.92). Conclusions: CSS-15 is a brief, reliable, and valid multidimensional measure of distress. The reduced measure retained excellent internal consistency and a stable factor structure, while correlating well with CSS-25 and PROMIS-29. CSS-15 can serve as a practical tool to efficiently screen for distress among cancer patients and survivors.

Background: Despite growing recognition that patient preferences and values should inform cancer care, patients’ views continue to be under-represented. We developed a quantitative tool, Valued Outcomes in the Cancer Experience (VOICE), to measure patient priorities and to understand discrepancies between what matters most to patients and what patients believe they can control. This study presents VOICE development and initial validation. Methods: 459 cancer patients completed an online survey and rated level of importance and perceived control for 54 value items (0=not at all; 4=very much). Items were derived from patient and caregiver focus groups and included themes such as independence, functional abilities, planning for the future, symptom management, health knowledge, and social support. Participants also completed validated measures of hope, optimism, quality of life, financial toxicity, spiritual well-being, illness perceptions, social support, self-efficacy, intolerance of uncertainty, and cancer-related distress. Iterative exploratory factor analysis (EFA) with direct oblique rotation, magnitude of importance and control ratings, and Pearson correlations between items and validation measures were used to inform scale refinement. Results: Participants were 86% non-Hispanic white; mean age=60 years, SD=10; 38% breast cancer, 18% blood, 9% lung, 9% prostate; mean time since diagnosis=6.5 years, SD=6; 22% metastatic. Items that did not load in the EFA, or were not associated with conceptually relevant validation measures, were removed or reworded. The final EFA explained over half of the variance in the data and demonstrated good fit, with absolute and relative fit indices in established acceptable ranges (PConclusions: The study results demonstrate a framework for developing a quantitative, multidimensional measure of patient values. By understanding what matters most to patients, VOICE is positioned to bring patient preferences to the foreground of cancer care, contribute to shared decision making, and enhance care. Next steps include further validation of this tool in diverse settings, including oncology practices and community-based organizations.

Objectives: To determine the feasibility and acceptability of a validated electronic distress screening program for cancer caregivers. Sample & Setting: 17 informal caregivers presenting with a patient with cancer to an ambulatory cancer surgery center. Methods & Variables: Caregivers completed the CancerSupportSource®—Caregiver screening and a brief semistructured interview concerning the screening. Results: Caregivers described the screening as straightforward and comprehensive. They endorsed concerns about their self-care needs but were most likely to request information or a referral for patient-focused concerns. Referrals generated from the program are likely viably addressed with existing supportive care resources. Implications for Nursing: Brief, caregiver-focused distress screening is perceived positively by caregivers. Caregivers indicated that they felt it validated the importance of their role and highlighted the hospital’s efforts to continually improve care. This screening program may be particularly beneficial in ambulatory surgical centers to efficiently identify caregivers with concerns and provide a point of entry to remediate these concerns.

Patient engagement is ever more essential to developing innovative strategies that shape how comprehensive, integrated medical care is delivered to cancer patients and their families. With over 300 licensed professionals across the network, Cancer Support Community (CSC) is the largest nonprofit employer of psychosocial oncology mental health professionals in the United States. Through decades of working with cancer patients, families, and caregivers, CSC has developed a portfolio of evidence-informed programs that engage patients around their most pressing concerns—unwanted aloneness, loss of control, and lack of hope. CSC’s facilities, which provide support groups, education, exercise and nutrition classes, children’s programs, and social activities, are available at no cost for families. These services are replicated on CSC’s helpline and digital platforms. This chapter highlights a comprehensive integrated model of developing and delivering evidence-informed psychosocial programs and services in the community. The chapter also reviews CSC patient-centered research projects including (1) the Cancer Experience Registry®, an online observational study of cancer patients, survivors, and informal caregivers to identify and quantify their psychosocial experiences; (2) CancerSupportSource®, a reliable, valid, multidimensional distress screening program for patients and caregivers; and (3) Open To Options®, a shared decision-making program that helps patients prepare a highly personalized list of questions, concerns, and goals to share with their doctor. The extent to which the psychosocial oncology community can integrate care across healthcare systems, by leveraging new technologies, behavioral and implementation science principles, and community-based services, will determine its success in meeting the needs of cancer patients.

Purpose CancerSupportSource® (CSS) is a distress screening program implemented at community-based organizations and hospitals nationwide. The 25-item CSS assesses distress across five domains, with capacity to screen for clinically significant depression and anxiety. This study examined psychometric properties of a shortened form to enhance screening opportunities when staff or patient burden considerations are significant. Methods Development and validation were completed in multiple phases. Item reduction decisions were made with 1436 cancer patients by assessing external/internal item quality and judging theoretical and practical implications of items. Pearson correlations and confirmatory factor analysis were conducted on a separate sample of 957 patients to corroborate psychometric properties and dimensionality of the shortened scale. Nonparametric receiver operating characteristic (ROC) curve analyses determined scoring thresholds for depression and anxiety risk scales. Results Scale refinement resulted in a 15-item short form plus one screening item assessing tobacco and substance use (CSS-15+). At least two items from each CSS domain were retained to preserve multidimensionality. In confirmatory analysis, the model explained 59% of the variance and demonstrated good fit. Correlation between CSS-15+ and 25-item CSS was 0.99, p Conclusions CSS-15+ is a brief, reliable, and valid multidimensional measure of distress. The measure retained excellent internal consistency (α = 0.94) and a stable factor structure. CSS-15+ is a practical and efficient screening tool for distress and risk for depression and anxiety among cancer patients and survivors, particularly in community-based settings.

Introduction: Breast cancer survivors are at risk for long-term chemotherapy-induced peripheral neuropathy (PN), which has few treatment options and can affect quality of life. We examined 1) the presence and severity of PN and its correlates among 442 metastatic (MBC) and 238 breast cancer (BC) survivors who received chemotherapy, and 2) provider communication, preparation, and confidence in managing treatment side effects (SEs). Methods: MBC and BC survivors enrolled in the Cancer Support Community's Cancer Experience Registry reported history of chemotherapy-induced PN and how disruptive (0=not at all; 4=very much) PN was to daily life. Participants also reported cancer-related distress (CancerSupportSource®, a 25-item measure with a 4-item depression/anxiety risk subscale) and quality of life (QoL; PROMIS-29). We examined the association between PN history, PN disruption, distress, risk for depression/anxiety, and worse QoL (PROMIS subscales >1SD from norms) with multivariate linear and logistic regression, adjusting for metastatic disease and number of comorbidities. We also explored associations between PN disruption, provider communication, preparation, and confidence in managing SEs. Results: Mean age was 55y (SD=10); 89% non-Hispanic White; 43% had ≥2 comorbidities. More MBC patients (66%) experienced PN than BC (54%; chi2=8.9, p Citation Format: Zaleta AK, Miller MF, Johnson J, McManus S, Buzaglo JS. Chemotherapy-induced peripheral neuropathy and quality of life among breast cancer survivors [abstract]. In: Proceedings of the 2017 San Antonio Breast Cancer Symposium; 2017 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2018;78(4 Suppl):Abstract nr P6-11-08.

Caring for people with cancer can be a burdensome and emotionally straining experience. Without adequate psychosocial support, distressed caregivers are at risk for psychiatric and medical morbidity, which can adversely affect patient outcomes. Although there is a tremendous need to provide effective and timely supportive care services for cancer caregivers, few community or clinically based services exist and the needs of these essential caregivers are profoundly underserved. This article describes three existing evidence-based programs and tools that address the needs of family caregivers of cancer patients: (a) the FOCUS Program, tested for efficacy in prior randomized clinical trials and implemented in community settings by agency staff; (b) the Program for the Study of Cancer Caregivers at Memorial Sloan Kettering Cancer Center (MSKCC), which addresses the needs of caregivers in a large health care system; and (c) CancerSupportSource®-Caregiver, an online platform for distress screening and referral developed by the Cancer Support Community to assess and address caregivers' needs. We also describe next steps related to broader dissemination for practitioners considering how best to support cancer caregivers now and in the future. Although each evidence-based program or tool represents a unique approach to supporting caregivers, together these approaches allow for a greater likelihood of meeting caregiver needs across a variety of contexts. Collaboration within and across organizations allowed for the development and effective implementation of each of the described initiatives.

Mounting evidence suggests that weight management and physical activity (PA) improve overall health and well being, and reduce the risk of morbidity and mortality among cancer survivors. Although many opportunities exist to include weight management and PA in routine cancer care, several barriers remain. This review summarizes key topics addressed in a recent National Academies of Science, Engineering, and Medicine workshop entitled, "Incorporating Weight Management and Physical Activity Throughout the Cancer Care Continuum." Discussions related to body weight and PA among cancer survivors included: 1) current knowledge and gaps related to health outcomes; 2) effective intervention approaches; 3) addressing the needs of diverse populations of cancer survivors; 4) opportunities and challenges of workforce, care coordination, and technologies for program implementation; 5) models of care; and 6) program coverage. While more discoveries are still needed for the provision of optimal weight-management and PA programs for cancer survivors, obesity and inactivity currently jeopardize their overall health and quality of life. Actionable future directions are presented for research; practice and policy changes required to assure the availability of effective, affordable, and feasible weight management; and PA services for all cancer survivors as a part of their routine cancer care. CA Cancer J Clin 2018;68:64-89. © 2017 American Cancer Society.

This abstract was not presented at the symposium.

Background: New therapies for multiple myeloma (MM) have improved survival rates but often expose patients to heightened toxicities and prolonged treatment, leading to increasing complications and side effects. We evaluated the association between symptom burden, perceived control over illness, and quality of life (QoL) among a national sample of patients with MM. Methods: For this observational, cross-sectional study, we used data from the Cancer Experience Registry research initiative to examine symptom- and functioning-related concerns among 289 patients with MM across the illness trajectory. We applied hierarchical multiple linear regression analyses to explore associations between symptom burden and perceived control over illness with QoL indicators: depression, anxiety, and social satisfaction. Results: In our sample, 73% of participants with MM reported currently receiving treatment; 39% experienced relapse; 56% received 1 to 2 autologous transplants, 10% received ≥3 autologous transplants, and 4% received allogeneic and autologous transplants; 30% had not received a stem cell transplant. Average time since diagnosis was 4.4 years. The most highly endorsed concerns included eating and nutrition (61%), physical activity (59%), moving around (56%), fatigue (55%), pain (52%), and sleep (46%). Only 27% believed they had control over their disease, whereas 48% perceived having control over the physical side effects of MM. Approximately one-third of the variance in anxiety and depression and nearly two-thirds of variance in social satisfaction were explained by sociodemographic, clinical, and symptom burden variables. Perceived control over illness significantly predicted depression and anxiety, but not social satisfaction. Our results highlight substantial concern among patients with MM about physical symptoms and function. Additionally, greater symptom burden significantly accounted for poorer QoL, and lower perceived control over illness was linked to depression and anxiety. Conclusions: Patients with MM and survivors experience substantive long-term QoL issues. Together, these findings point to the critical need for comprehensive symptom management, integrated palliative care, and enhancement of social and emotional support for individuals with MM.

The demands of caregiving are associated with physical, emotional, and practical consequences for cancer patients and caregivers. Guided by a person-centered model of evidence-based support, the Cancer Support Community, an international nonprofit organization, provides patient and caregiver support, education, and programming. This chapter highlights two research initiatives: the Cancer Experience Registry® online research program and CancerSupportSource–Caregiver®, a web-based distress-screening program designed to identify caregiver needs and refer caregivers to tailored support services. In addition, the chapter summarizes the educational and support programs available to caregivers at no cost through the Cancer Support Community. Finally, the chapter includes recommendations for future implementation and dissemination research on the effectiveness of integrated caregiver support with respect to quality and cost-related outcomes.

Unintentional weight loss (UWL) is a prevalent problem in people with cancer and is associated with poorer psychosocial outcomes. A gap exists in understanding whether and how perceived and/or weight status impacts experiences of UWL. Thus, we sought to examine subjective experiences of UWL in people with cancer, and whether perceived and/or actual weight status impacts these experiences.Participants were recruited through Cancer Support Community's Cancer Experience Registry® and related networks. Participants completed an online survey that included the FAACT Anorexia-Cachexia subscale, and 19 items that captured six themes related to "beliefs and concerns" (positive beliefs, psychosocial impact, physical impact, cancer outcomes, self-esteem, relationships with others). Perceived weight status (PWS) was assessed using a single item. Body mass index (BMI) was calculated using self-reported weight and height measurements.Of 326 respondents, 114 reported experiencing UWL. Over one-third misperceived their weight, with 29% perceiving weight status as below their BMI status. UWL in those with perceived weight status of overweight/obese was associated with positive beliefs. However, being underweight by BMI or perceiving oneself as underweight were both associated with greater concerns about weight loss. Perceived weight status of underweight compared to normal or overweight/obese weight status was associated with poorer psychosocial well-being, personal control, self-esteem, and relationships with others.In people with cancer, perceived weight status, rather than BMI, had greater impact on negative "beliefs and concerns" about UWL. Findings suggest assessment of both perceived and actual BMI to address the impact of UWL on psychosocial wellbeing.

132 Background: Performance status is used to characterize patient ability to tolerate chemotherapy and as a selection criterion for clinical research. Poor performance status can exclude patients from clinical trial participation. Further, African American cancer patients are underrepresented in cancer clinical trials. The study purpose was to document performance status at the initial patient visit to a community oncology practice and to explore racial disparities between White and Black patients. Methods: This study used a retrospective, observational design with ePRO collected via the Patient Care Monitor™ (PCM). All study data were collected as part of routine clinical care at a community oncology practice during 1/2019–11/2019. An Eastern Cooperative Oncology Group (ECOG) score was automatically calculated after patients at an initial clinic visit completed a 1-item question that assessed performance status via e-tablet. Results: 6,613 patients completed the PCM survey (mean age 59; 33% male/67% female; 55.4% White, 38% Black). Cancer type was known for a subset of patients (22% breast, 9% hematologic, 4% lung, 5% colorectal, 3% prostate, 11% other types). The average ECOG score for the total sample was 0.97. 50% indicated they were able to complete their normal daily activities without any restriction; 26.9% were able to complete their normal daily activities and some light work. In contrast, 10.3% indicated they could take care of themselves, but could not work and are in bed/chair less than half the day. 10.3% could take care of themselves sometimes but could not work and are in bed/chair more than half the day. 4.5% indicated they could not take care of themselves and were in bed/chair almost always. When assessing racial differences between those self-identifying as White or Black/African American, average ECOG score was higher in Black patients [Mean(SD) = 1.03(1.24)] when compared to White patients [Mean(SD) = 0.93(1.14)] (p = 0.003). We observed a higher percentage of Black patients reported not being able to take care of themselves (51.9% Black v. 41.0% White). In contrast, a higher percentage of White patients reported being able to complete all daily activities without restriction (38.3% Black v. 54.5% White). Conclusions: This study shows significant racial disparities in performance status among patients seen at a community oncology practice with Black patients exhibiting significant worse performance status than White patients. These findings have implications for disparities in treatment outcomes and racially biased access to clinic trials.

e19191 Background: ASCO has implemented the Quality Oncology Practice Initiative (QOPI), a certification program established to evaluate oncology practice performance. Also, a growing number of accreditation (JCAHO) and merit-based organizations (MIPS) maintain falls risk assessment standards. Practices often lack the necessary resources to comply with required metric reporting standards. The study purpose was to document the effectiveness of using an electronic Patient Reported Outcome (ePRO) system to facilitate compliance with a core QOPI standard, documentation of smoking status by second office visit, and with JCAHO and MIPS falls risk assessment. Methods: This study used a retrospective, observational design with ePRO collected via the Patient Care Monitor (PCM), a web-based ePRO system linked to electronic medical record data. All study data were collected as part of routine clinical care at a community oncology practice during an 11-month interval (1/2019–11/2019). Patients at an initial clinic visit completed a tobacco usage survey and a brief falls risk survey on the PCM platform via a handheld e-tablet. Results: Overall, 6,613 unique patients completed the PCM survey (mean age 59; 33% male/67% female; 55.4% White, 38% Black). Cancer type was known for a subset of patients (22% breast, 9% hematologic, 4% lung, 5% colorectal, 3% prostate, 11% other types). Across the collected PRO measures, there was an over 98% completion rate with only 1-2% missing data. A relatively significant proportion (51%) indicated they had never used tobacco products and 15% indicated that they were current users. Among patients who ever used tobacco products, 34% indicated they smoked cigarettes, 4% smoked cigars, and 3% used electronic cigarettes. Over a fifth of patients (22%) indicated they had at least one fall over six months; 10% indicated having experienced one fall; 6% indicated two falls; 6% indicated 3 falls or more. 17% indicated they use an ambulatory aid and 12% reported a recent fall within the past 3 months. Conclusions: This study demonstrates that using an ePRO system is an effective way to screen for tobacco usage and falls risk and can be used to: 1) monitor health-related behaviors to enhance physician-patient communication; 2) provide an audit trail for QOPI, JCAHO, MIPS and other quality metric reporting. Automated collection of PRO data allows the healthcare team to focus their clinical time on patients showing increased risk. Overall, an ePRO system contributes to creating a culture of excellence at community oncology practices.

Background: An estimated 155,000 people are living with metastatic breast cancer (MBC) in the US. With new developments in treatment, people are living longer with MBC. Advances in treatment are handicapped by patients’ limited (3-5%) participation in cancer clinical trials (CCTs). While much effort has been placed on better training physicians and health care providers in talking to their patients about the appropriateness of such participation, barriers remain. Methods: Since March 2013, the Cancer Support Community has registered 909 people living with MBC to the Cancer Experience Registry, an online initiative designed to learn and raise awareness about the psychosocial impact of cancer. 557 registrants responded to questions about their beliefs, attitudes and experience with CCTs. This sample was 99% female, 91% Caucasian, and 69% with a college degree and median age 56. Median time since MBC diagnosis was 3 years. Statementpercent agree or strongly agreepercent agree or strongly agree if did NON take part in CCT n=419percent agree or strongly agree if DID take part in CCT n=126pI am uncomfortable with being randomly assigned to a treatment6768600.001 Results: Only half of registrants reported that a member of their health care team spoke to them about participating in CCTs. Nearly one-quarter (23%) report that they took part in a CCT. 48% considered a CCT as a treatment option for their MBC and 34% did not know if a CCT was available to them. 67% are uncomfortable with being randomly assigned to a treatment. 18% do not trust the medical establishment and fear they will be used as a "guinea pig" for research. 63% fear receiving a placebo in a CCT; however, only 6% report that they don’t understand what clinical trials are. The table below shows differences in beliefs between those who report participating in a CCT and those who have not participated in one.MCTConclusion: This population of MBC patients reports a range of experiences and often conflicting beliefs about CCTs. While this survey is limited to self-report data, there is persistent suspicion among these women about participating in CCTs. Although these women report that they understand what a CCT is, they fear receiving a placebo and being randomized to different treatment arms without at least the standard of care. These misconceptions persist even among people who have participated in a CCT. These findings highlight the need for treatment decision counseling that educates patients about all their treatment options including CCTs and for training of health care providers to better inform patients about CCTs. Citation Format: Anne Morris, Melissa Miller, Allison Harvey, Mitch Golant, Joanne Buzaglo. Perceptions about cancer clinical trials among metastatic breast cancer patients: Findings from a patient powered registry [abstract]. In: Proceedings of the Thirty-Seventh Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2014 Dec 9-13; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2015;75(9 Suppl):Abstract nr P2-12-02.

Background: An estimated 155,000 people are living with metastatic breast cancer (MBC) in the US. With new developments in treatment, people are living longer with MBC and are confronted with more complex treatment decisions. Patient-provider communication is typically inadequate and patients are not fully prepared for communicating effectively with their doctor. Methods: Since March 2013, the Cancer Support Community has registered 909 people living with MBC to the Cancer Experience Registry, an online initiative designed to learn and raise awareness about the psychosocial impact of cancer. 572 registrants responded to questions about their experience with making treatment decisions. This sample was 99% female, 91% Caucasian, and 69% with a college degree and median age 56. Median time since MBC diagnosis was 3 years. Results: Before making a treatment decision, nearly all (91%) reported receiving information about their cancer type; 76% received information about their treatment choices. Only 41% indicated they received information about clinical trials prior to making a treatment decision. Just over half reported they had quite a bit of knowledge about their treatment options. However, 22% had little or no knowledge about their treatment options. Thirty-eight percent received treatment decision support prior to making a treatment decision; 45% would have liked more support. Twelve percent had little or no involvement in their treatment decision-making process. Nearly one-third (29%) did not feel they had a treatment choice and 28% reported they did not have enough time to make a treatment decision. Those who wrote down a list of questions prior to their first visit to discuss treatment options with their health care provider felt significantly more prepared to discuss their treatment options (p Conclusion: Although over two thirds of these women were satisfied with various aspects of treatment decision making including their communication and interaction with their doctor around the decision, nearly 30% of women thought that they had no choice or felt rushed in making a decision. Those women who prepared a list of questions prior to a consultation with the doctor were significantly more prepared in making an appropriate decision. While a small majority of patients report being knowledgeable about treatment options, a significant proportion report not having enough knowledge or support to fully engage in a treatment decision. Further efforts are needed to address gaps in the delivery of decision support to MBC patients. Citation Format: Joanne Buzaglo, Melissa Miller, Anne Morris, Allison Harvey, Mitch Golant. Characterizing the metastatic breast cancer patient experience around preparing for a treatment decision [abstract]. In: Proceedings of the Thirty-Seventh Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2014 Dec 9-13; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2015;75(9 Suppl):Abstract nr P2-10-04.

Background: An estimated 155,000 people are living with metastatic breast cancer (MBC) in the US. With new developments in treatment, people are living longer with MBC and have to manage greater financial burden related to care, including copays and out of pocket costs. Methods: Since March 2013, the Cancer Support Community has registered 909 people living with MBC to the Cancer Experience Registry, an online initiative designed to raise awareness about the psychosocial impact of cancer. 496 registrants responded to questions about the financial cost of MBC. This sample was 99% female, 91% Caucasian, and 69% with a college degree and median age 56. Median time since MBC diagnosis was 3 years. Results: 38% of registrants report being seriously or very seriously concerned about health insurance or money worries and 46% reported currently experiencing intrusive ideation about the financial cost of care. Registrants reported experiencing a significant burden from MBC related expenses, as shown in the table below. Please tell us how much of a burden the following additional expenses caused you. (0=not at all to 4=very much)n≥3 (%)copays for medical treatments (e.g., surgery, chemotherapy, radiation, etc.)49246.1Prescription drugs and over the counter medication (including co-pays)49240.9Copays for medical appointments/visits49239.3Diagnostics or treatment not covered by insurance49239.7Complementary medicine or alternative therapy (e.g., vitamins, homeopathy)49137.9Travel (parking, gas)48920.6Medical supplies48921.3Late fees on bills49219.6Counseling or therapy48819.9 Because of these expenses, registrants have: foregone vacations, celebrations, and social events (53%); sold property (12%); refinanced their house (13%); filed for bankruptcy (5%); downsized their living accommodations (16%); liquidated their assets (19%); depleted their savings (40%); borrowed against or used money from a retirement plan (27%); cut their grocery expenses (42%); applied for or used public assistance (14%); chosen a treatment that is not as effective but costs less (9%); asked their doctor if there was a less expensive treatment (19%); tried to negotiate payments with credit companies (24%); negotiated with service providers to reduce costs (22%); used pharmaceutical assistance programs (26%); accepted money from friends or family (39%); and cashed in a life insurance policy early (8%), among others. In order to reduce the cost of treating MBC, registrants often or always postpone seeking psychological counseling or support (20%) and delay follow up on recommendations for complementary treatment such as physical or occupational therapy and nutrition counseling (13%). Conclusion: MBC places a significant financial burden on patients, which can result in patients taking measures that can significantly impact their quality of life. Future implications for research include the development and evaluation of interventions designed to enhance doctor-patient communication and support (e.g., financial counseling) to ensure that the financial cost of MBC does not negatively impact the patient’s quality of life, course of cancer care, and health outcomes. Citation Format: Joanne Buzaglo, Anne Morris, Melissa Miller, Allison Harvey, Mitch Golant. The financial costs of metastatic breast cancer and the decisions patients make to cope with costs: Findings from the Cancer Experience Registry [abstract]. In: Proceedings of the Thirty-Seventh Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2014 Dec 9-13; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2015;75(9 Suppl):Abstract nr P2-12-03.

Mounting evidence suggests that weight management and physical activity (PA) improve overall health and well being, and reduce the risk of morbidity and mortality among cancer survivors. Although many opportunities exist to include weight management and PA in routine cancer care, several barriers remain. This review summarizes key topics addressed in a recent National Academies of Science, Engineering, and Medicine workshop entitled, "Incorporating Weight Management and Physical Activity Throughout the Cancer Care Continuum." Discussions related to body weight and PA among cancer survivors included: 1) current knowledge and gaps related to health outcomes; 2) effective intervention approaches; 3) addressing the needs of diverse populations of cancer survivors; 4) opportunities and challenges of workforce, care coordination, and technologies for program implementation; 5) models of care; and 6) program coverage. While more discoveries are still needed for the provision of optimal weight-management and PA programs for cancer survivors, obesity and inactivity currently jeopardize their overall health and quality of life. Actionable future directions are presented for research; practice and policy changes required to assure the availability of effective, affordable, and feasible weight management; and PA services for all cancer survivors as a part of their routine cancer care. CA Cancer J Clin 2018;68:64-89. © 2017 American Cancer Society.

Expression of emotion has been linked to numerous critical and beneficial aspects of human functioning. Accurately capturing emotional expression in text grows in relevance as people continue to spend more time in an online environment. The Linguistic Inquiry and Word Count (LIWC) is a commonly used program for the identification of many constructs, including emotional expression. In an earlier study (Bantum & Owen, 2009) LIWC was demonstrated to have good sensitivity yet poor positive predictive value. The goal of the current study was to create an automated machine learning technique to mimic manual coding. The sample included online support groups, cancer discussion boards, and transcripts from an expressive writing study, which resulted in 39,367 sentence-level coding decisions. In examining the entire sample the machine learning approach outperformed LIWC, in all categories outside of Sensitivity for negative emotion (LIWC Sensitivity = .85; Machine Learning Sensitivity = .41), although LIWC does not take into consideration prosocial emotion, such as affection, interest, and validation. LIWC performed significantly better than the machine learning approach when removing the prosocial emotions (p =

Patient participation in cancer clinical trials is low. Little is known about attitudinal barriers to participation, particularly among patients who may be offered a trial during an imminent initial oncology consult. The aims of the present study were to confirm the presence of proposed subscales of a recently developed cancer clinical trial attitudinal barriers measure, describe the most common cancer clinical trials attitudinal barriers, and evaluate socio-demographic, medical and financial factors associated with attitudinal barriers. A total of 1256 patients completed a survey assessing demographic factors, perceived financial burden, prior trial participation and attitudinal barriers to clinical trials participation. Results of a factor analysis did not confirm the presence of the proposed four attitudinal barriers subscale/factors. Rather, a single factor represented the best fit to the data. The most highly-rated barriers were fear of side-effects, worry about health insurance and efficacy concerns. Results suggested that less educated patients, patients with non-metastatic disease, patients with no previous oncology clinical trial participation, and patients reporting greater perceived financial burden from cancer care were associated with higher barriers. These patients may need extra attention in terms of decisional support. Overall, patients with fewer personal resources (education, financial issues) report more attitudinal barriers and should be targeted for additional decisional support.

5 Background: The American Society of Clinical Oncology recommends that providers encourage early advance care planning with their patients; yet, many cancer patients do not have advance directives (ADs). A potential reason for low AD rates is inadequate communication between the provider and patient. To address this gap, we developed an outpatient clinic AD initiative for any stage cancer patients via an ePRO system. The AD module was designed to ensure patients are aware of ADs and to assess whether or not the patient had ADs, specifically a Living Will and/or a durable power of attorney and their interest in receiving information about ADs. The study purpose was to assess patient AD status at the patient’s initial visit to an oncology clinic. Methods: This study used a retrospective, observational design that involved use of PRO data collected via the Patient Care Monitor (PCM), a web-based ePRO system linked to electronic medical record data. All study data were collected as part of routine clinical care. All patients at an initial visit to an oncology clinic completed the PCM survey, including the AD module, via a handheld e-tablet. Results: Overall, 18,239 patients completed the AD module (mean age 62; 32% male/68% female; 55% married; 60% White, 36% Black). One third of all patients (30%) reported having an AD at the time of the initial visit to the oncology clinic, specifically 11% indicated having a Living Will and 19% a durable power of attorney. The remaining two-thirds (70%) indicated either NOT having an AD (58%) or not knowing if they had an AD (12%). Patients with ADs were more likely to be older (M= 69 v. 59 yrs) and White (77% v 20% Black) ps < .0001. Of the patients without ADs, 10% requested more information on ADs. These patients were more likely to be older (M= 61 v. 58 yrs), female (68% v 32%), Black (54% v 40% White) and non-married/non-partnered (53% v 47%); ps < .005. Conclusions: This study demonstrates that the majority of patients do not have ADs at the time of an initial visit to a community-based oncology practice. Using an ePRO system can be an innovative and non-threatening way to identify unmet needs of patients and link them to resources for developing advance directives.

171 Background: ASCO has implemented the Quality Oncology Practice Initiative (QOPI), a certification program established to evaluate oncology practice performance. However, practices often lack the necessary resources to meet the required standards and fulfill required metric reporting. The study purpose was to document the effectiveness of using an electronic Patient Reported Outcome (ePRO) system to facilitate compliance with two QOPI standards: pain assessment and depression screening. Methods: This study used a retrospective, observational design with ePRO and clinical data collected via the Patient Care Monitor (PCM), a web-based ePRO system linked to electronic medical record data. All study data were collected as part of routine clinical care at a community oncology practice during a 4-month interval (1/1–4/26/19). Patients at an initial oncology clinic visit completed the PCM Core Symptom survey and the PHQ2/PHQ9 to screen for pain and depression respectively via a handheld e-tablet. Results: Overall, 10,449 patients completed the PCM survey (mean age 63; 30% male/70% female; 62% White, 34% Black). Cancer type was known for 53% of all patients (22% breast, 9% hematologic, 4% lung, 5% colorectal, 3% prostate, 11% other types). Fifteen percent of patients (n = 1584) met the pain threshold (scored 7 or above on a 0-10 scale) that signaled an alert to the physician for further evaluation. About 3% of patients (n = 413) skipped the pain question on the PCM Core Symptom survey. With respect to depression, 5% (n = 559) reported a PHQ2 threshold level that triggered the remaining PHQ9 items. Among those at higher risk for depression, 16% (n = 92) met criteria for moderate to severe depression warranting further clinical evaluation and the PCM signaled a real-time alert to the physician in advance of the patient consultation. Approximately 4% (n = 413) skipped the PHQ2. Conclusions: This study demonstrates that using an ePRO system is an effective way to screen for pain and depression and can be used to: 1) monitor symptoms to enhance physician-patient communication during the consultation; 2) provide an audit trail for QOPI metric reporting. Overall, an ePRO system contributes to creating a culture of excellence at community oncology practices.

e23181 Background: The National Comprehensive Cancer Network and the American Society of Clinical Oncology recommend that providers encourage early advance care planning with their patients1; yet, many cancer patients do not have advance directives (ADs). A potential reason for low AD rates is inadequate communication between the provider and patient. To address this gap, we developed an outpatient clinic AD initiative for any stage cancer patients via an ePRO system. The AD module was designed to ensure that patients are aware of ADs and to assess whether or not the patient had ADs, specifically a Living Will and/or a durable power of attorney. The study purpose was to assess patient AD status at the patient’s initial visit to an oncology clinic. Methods: This study used a retrospective, observational design that involved use of PRO and clinical data collected via the Patient Care Monitor™ (PCM), a web-based ePRO system linked to electronic medical record data. All data used in this study were collected as part of routine clinical care. All patients at an initial visit to an oncology clinic completed the PCM survey, including the AD module, via a handheld e-tablet. Results: Overall, 9,682 patients completed the AD module (mean age 63; 31% male/69% female; 58% married; 62% White, 35% Black). Cancer type was known for 75% of all patients (29% breast, 11% hematologic, 7% lung, 7% colorectal, 3% prostate, 17% other types). One third of all patients (33%) reported having an AD at the time of the initial visit to the oncology clinic, specifically 24% indicated having a Living Will and 9% a durable power of attorney. The remaining two-thirds (67%) indicated either NOT having an AD (56%) or not knowing if they had an AD (11%). Patients with ADs were more likely to be older ( M=68 v. 60 yrs), male (38% v 31%), White (41% v 20% Black) and married/partnered (35% v 29%); ps 1Brown AJ, Shen MJ, Urbauer D, et al. Room for improvement: An examination of advance care planning documentation among gynecologic oncology patients. Gynecol Oncol. Sep 2016;142(3):525-530.

The present study explored the impact of a tailored telephone counseling intervention on increasing follow-up adherence after an abnormal Pap smear result among low-income, minority women, which may reduce cervical cancer disparity.Participants (N=211) were randomly assigned to receive: (1) a telephone reminder that included an assessment of barriers to adherence, as well as counseling tailored to the barriers elicited; (2) telephone reminder and barriers assessment, followed by a mailed home tailored barriers print brochure; or (3) enhanced standard care comprising telephone reminder and barriers assessment. Assessments were obtained at initial contact and 1-week later, as well as at 6- and 12-months after the initial colposcopy.The telephone counseling group showed greater adherence to follow-up recommendations than did the combined other two groups (p0.05). For the initial colposcopy, tailored telephone barriers counseling was more effective among women with a high school education or less.Tailored telephone barriers counseling improves adherence to initial colposcopy, as well as to longer-term medical follow-up, among low-income, inner-city women.Dissemination of barriers counseling into ongoing telephone reminder calls and contacts may decrease disparities in cancer outcomes, especially among women with less than post-secondary education.

Objective. This study used the Ottawa Decision Support Framework to evaluate a model examining associations between clinical trial knowledge, attitudinal barriers to participating in clinical trials, clinical trial self-efficacy, and clinical trial preparedness among 1256 cancer patients seen for their first outpatient consultation at a cancer center. As an exploratory aim, moderator effects for gender, race/ethnicity, education, and metastatic status on associations in the model were evaluated. Methods. Patients completed measures of cancer clinical trial knowledge, attitudinal barriers, self-efficacy, and preparedness. Structural equation modeling (SEM) was conducted to evaluate whether self-efficacy mediated the association between knowledge and barriers with preparedness. Results. The SEM explained 26% of the variance in cancer clinical trial preparedness. Self-efficacy mediated the associations between attitudinal barriers and preparedness, but self-efficacy did not mediate the knowledge-preparedness relationship. Conclusions. Findings partially support the Ottawa Decision Support Framework and suggest that assessing patients’ level of self-efficacy may be just as important as evaluating their knowledge and attitudes about cancer clinical trials.

The Cancer Support Community (CSC) provides psychosocial support to people facing cancer in community settings. The purpose of this study was to evaluate the compatibility, effectiveness, and fidelity of the Situation–Choices–Objectives–People–Evaluation–Decisions (SCOPED) question-listing intervention at three CSC sites. Between August 2008 and August 2011, the Program Director at each CSC site implemented question-listing, while measuring patient distress, anxiety, and self-efficacy before and after each intervention. We analyzed the quantitative results using unadjusted statistical tests and reviewed qualitative comments by patients and the case notes of Program Directors to assess compatibility and fidelity. Program Directors implemented question-listing with 77 blood cancer patients. Patients reported decreased distress (p = 0.009) and anxiety (p = 0.005) and increased self-efficacy (p

BACKGROUND: Cancer patients and their oncologists often report differing perceptions of consultation discussions and discordant expectations regarding treatment outcomes. CONNECT, a computer-based communication aid, was developed to improve communication between patients and oncologists. METHODS: CONNECT includes assessment of patient values, goals, and communication preferences; patient communication skills training; and a preconsultation physician summary report. CONNECT was tested in a 3-arm, prospective, randomized clinical trial. Prior to the initial medical oncology consultation, adult patients with advanced cancer were randomized to the following arms: 1) control; 2) CONNECT with physician summary; or 3) CONNECT without physician summary. Outcomes were assessed with postconsultation surveys. RESULTS: Of 743 patients randomized, 629 completed postconsultation surveys. Patients in the intervention arms (versus control) felt that the CONNECT program made treatment decisions easier to reach (P = .003) and helped them to be more satisfied with these decisions (P < .001). In addition, patients in the intervention arms reported higher levels of satisfaction with physician communication format (P = .026) and discussion regarding support services (P = .029) and quality of life concerns (P = .042). The physician summary did not impact outcomes. Patients with higher levels of education and poorer physical functioning experienced greater benefit from CONNECT. CONCLUSIONS: This prospective randomized clinical trial demonstrates that computer-based communication skills training can positively affect patient satisfaction with communication and decision-making. Measurable patient characteristics may be used to identify subgroups most likely to benefit from an intervention such as CONNECT. Cancer 2013. © 2013 American Cancer Society.

Objective The purpose was to test the psychometric properties of a 36-item community-based problem-related distress screening tool, among 319 cancer survivors recruited across 14 affiliates of the Cancer Support Community. Methods Internal reliability was estimated using Cronbach's alpha coefficient. Test–retest reliability was assessed using the intra-class correlation coefficient (ICC). Concurrent validity was determined by correlations with the Functional Assessment of Cancer Therapy-General Well-Being Scale (FACT-G), the Center for Epidemiologic Studies Depression Scale (CES-D), and the Distress Thermometer (DT) and receiver operating characteristic (ROC) curve analysis using the CES-D (≥16) and DT (≥4) as the criterion. Non-parametric analysis of variance was used to establish discriminant validity. Results The distress screener demonstrated high internal consistency (Cronbach's alpha = 0.91) and strong test–retest reliability (ICC ≥ 0.75). Summary scores of the distress screener correlated substantially with the FACT-G (R2 = 0.58, p

Background Cancer clinical trials (CCTs) are important tools in the development of improved cancer therapies; yet, participation is low. Key psychosocial barriers exist that appear to impact a patient’s decision to participate. Little is known about the relationship among knowledge, self efficacy, preparation, decisional conflict, and patient decisions to take part in CCTs.

Purpose Lack of knowledge and negative attitudes have been identified as barriers to participation in clinical trials by patients with cancer. We developed Preparatory Education About Clinical Trials (PRE-ACT), a theory-guided, Web-based, interactive computer program, to deliver tailored video educational content to patients in an effort to overcome barriers to considering clinical trials as a treatment option. Patients and Methods A prospective, randomized clinical trial compared PRE-ACT with a control condition that provided general clinical trials information produced by the National Cancer Institute (NCI) in text format. One thousand two hundred fifty-five patients with cancer were randomly allocated before their initial visit with an oncologist to PRE-ACT (n = 623) or control (n = 632). PRE-ACT had three main components: assessment of clinical trials knowledge and attitudinal barriers, values assessment with clarification back to patients, and provision of a video library tailored to address each patient’s barriers. Outcomes included knowledge and attitudes and preparation for decision making about clinical trials. Results Both PRE-ACT and control interventions improved knowledge and attitudes (all P < .001) compared with baseline. Patients randomly allocated to PRE-ACT showed a significantly greater increase in knowledge (P < .001) and a significantly greater decrease in attitudinal barriers (P < .001) than did their control (text-only) counterparts. Participants in both arms significantly increased their preparedness to consider clinical trials (P < .001), and there was a trend favoring the PRE-ACT group (P < .09). PRE-ACT was also associated with greater patient satisfaction than was NCI text alone. Conclusion These data show that patient education before the first oncologist visit improves knowledge, attitudes, and preparation for decision making about clinical trials. Both text and tailored video were effective. The PRE-ACT interactive video program was more effective than NCI text in improving knowledge and reducing attitudinal barriers.

Purpose The decision to enroll in a clinical trial is complex given the uncertain risks and benefits of new approaches. Many patients also have financial concerns. We sought to characterize the association between financial concerns and the quality of decision making about clinical trials. Methods We conducted a secondary data analysis of a randomized trial of a Web-based educational tool (Preparatory Education About Clinical Trials) designed to improve the preparation of patients with cancer for making decisions about clinical trial enrollment. Patients completed a baseline questionnaire that included three questions related to financial concerns (five-point Likert scales): “How much of a burden on you is the cost of your medical care?,” “I'm afraid that my health insurance won't pay for a clinical trial,” and “I’m worried that I wouldn’t be able to afford the costs of treatment on a clinical trial.” Results were summed, with higher scores indicating greater concerns. We used multiple linear regressions to measure the association between concerns and self-reported measures of self-efficacy, preparation for decision making, distress, and decisional conflict in separate models, controlling for sociodemographic characteristics. Results One thousand two hundred eleven patients completed at least one financial concern question. Of these, 27% were 65 years or older, 58% were female, and 24% had a high school education or less. Greater financial concern was associated with lower self-efficacy and preparation for decision making, as well as with greater decisional conflict and distress, even after adjustment for age, race, sex, education, employment, and hospital location (P < .001 for all models). Conclusion Financial concerns are associated with several psychological constructs that may negatively influence decision quality regarding clinical trials. Greater attention to patients’ financial needs and concerns may reduce distress and improve patient decision making.

Background: Chronic lymphocytic leukemia (CLL) progresses with time and, as a result, patients can be challenged by considering multiple treatment options. Importantly, over the past decade, an array of new CLL treatments have emerged, including targeted therapy and immunotherapy options. Health care teams, therefore, play an important role in discussing new treatments with patients to ensure shared decision making. A substantial proportion of patients, however, report not discussing newly approved treatment options with clinicians. Our goal was to understand the sociodemographic and clinical factors associated with doctors' likelihood of discussing new treatment options in a national sample of CLL patients. Methods: Using data from the Cancer Support Community's Cancer Experience Registry®, our analytic sample included 187 participants who report CLL as their primary diagnosis. The dependent variable in all analyses was a dichotomous, patient-reported indicator of whether or not their doctor discussed new treatment options (e.g., ibrutinib, idealisib, obinutuzumab) with them. Our independent variables included: 1) sociodemographic characteristics: age, gender, education, urbanicity, and race; 2) clinical factors: genetic risk, treatment status, years since diagnosis, CLL risk (low, intermediate or high; based on patient report of how doctor estimated their CLL may progress over time), and relapse; and 3) patient-clinician communication: patient involvement in treatment decision making, patient's consideration of financial cost of care, discussion of health care team's goals for treatment, and discussion of patient's goals for treatment. Our analyses proceeded in two steps. First, we descriptively compared patients who discuss new treatments with their doctors and those who do not using Student's t-test. Second, multivariate logistic regression models estimated likelihood of doctor discussing new treatment options by sociodemographic, clinical, and patient-provider characteristics. Multiple imputation accounted for missingness in our regression models. Results: Our sample was 48% female, 96% White, and averaged 62 years of age (SD = 10), with a mean time since diagnosis of 7 years (SD = 5). 18% of our sample reported having a deletion 17p, 22% reported having a deletion 13q, 22% were currently receiving chemotherapy, and 16% reported recurrence of their CLL. 58% of our sample reported discussing new treatment options with their doctor. Descriptively, patients who report higher frequencies of cancer recurrence, intermediate or high risk of their CLL, genetic testing results indicative of deletion 17p and deletion 13q, current chemotherapy, greater involvement in treatment decision making, and lower consideration of financial cost of care were significantly more likely to discuss new treatment options with their doctors. In multivariate models, controlling for all sociodemographic, clinical, and patient-clinician characteristics, our results highlight a greater likelihood of discussing new options among patients who have experienced a relapse of their CLL. Conclusion: Nearly half of our CLL patients did not report discussing new treatment options with their clinician, raising concerns about whether shared decision-making is really taking place in the era of novel CLL therapeutics. While those who experience a relapse are significantly more likely to discuss new treatment options, unmet needs remain. As new treatments are incorporated into standard of care, greater efforts are needed to enhance shared decision-making at all points of care. Disclosures Buzaglo: Vector Oncology: Employment.

84 Background: In the era of value-based cancer care, identifying what is important to cancer survivors, and their perceived control over these experiences, can inform shared decision-making and support quality care. We examined cancer patient priorities and control to guide the development of a new measure of patient value, Valued Outcomes in the Cancer Experience (VOICE). Methods: 459 cancer patients completed an online survey and rated level of importance and control over 54 value items (0 = not at all; 4 = very much). Items of most and least importance, items with most and least control, and rating discrepancies (importance-control) were identified. Bivariate associations with socio-demographics were examined. Results: Participants were 86% non-Hispanic White; mean age = 60 years, SD= 10; 38% breast cancer, 18% blood, 9% lung, 9% prostate; mean time since diagnosis = 6.5 years, SD= 6; 22% metastatic. Items of highest importance (quite a bit to very much) included, “Having your health care team (HCT) talk to you in a way that makes sense to you” (99% of participants); “Making decisions for yourself” (99%); “Talking honestly with your HCT about your illness” (99%). Participants reported the most control over, “Talking honestly with your HCT about your illness” (89%); “Making decisions for yourself” (88%), “Understanding your illness” (84%). Greatest discrepancies were, “Having your illness not get worse or come back” (96% Important; 27% Control); “Having energy to do things that are important to you (98% Important; 41% Control); “Being able to afford medical expenses” (96% Important; 49% Control); “Having a death free from suffering” (91% Important; 40% Control); “Having your medical providers communicate with each other about your care” (94% Important; 44% Control). Greater importance/control discrepancies were associated with lower income, unemployment due to disability, and poorer health ( ps < .05). Conclusions: Cancer patients experience notable discrepancies between personal priorities and their ability to control these experiences, suggesting key areas for intervention and support. Next steps include psychometric assessment to refine the VOICE scale to guide clinical and research efforts to improve patient care outcomes.

Cancer prevention clinical trials seek to enroll individuals at increased risk for cancer. Little is known about attitudes among physicians and at-risk individuals towards cancer prevention clinical trials. We sought to characterize barriers to prevention trial participation among medical oncologists and first-degree relatives of their patients.Physician participants were practicing oncologists in Pennsylvania. Eligible first-degree participants were adult relatives of a cancer patient being treated by one of the study physicians. The influence of perceived psychosocial and practical barriers on level of willingness to participate in cancer prevention clinical trials was investigated.Response rate was low among physicians, 137/478 (29%), and modest among eligible first-degree relatives, 82/129 (64%). Lack of access to an eligible population for prevention clinical trials was the most commonly cited barrier to prevention clinical trials among oncologists. Nearly half (45%) of first-degree relatives had not heard of cancer prevention clinical trials, but 68% expressed interest in learning more, and 55% expressed willingness to participate. In the proportional odds model, greater information source seeking/responsiveness (i.e., interest in learning more about clinical prevention trials from more information sources) (p = 0.04), and having fewer psychosocial barriers (p = 0.02) were associated with a greater willingness to participate.Many individuals who may be at greater risk for developing cancer because of having a first-degree relative with cancer are unaware of the availability of clinical cancer prevention trials. Nonetheless, many perceive low personal risk associated with these studies, and are interested in learning more.

e22131Background: Many cancer patients have concerns about nutrition, weight, fatigue, or fitness, but may have difficulty discussing these topics with their health care team (HCT). We examined ass...

e16037Background: With newer gastric cancer (GC) treatment combinations and targeted therapies, it is important for patients to understand treatment options and their impact. We examined GC patient...