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Family management (FM) challenges of maternal caregivers of young adult survivors of childhood brain tumors are well documented, but there are no evidence-based caregiver interventions to improve FM.The aims of this study were to (1) generate the knowledge necessary for developing a caregiver intervention (stage 0) and (2) modify an existing, efficacious intervention by engaging stakeholders (stage 1).Stages 0 and 1 of the National Institutes of Health Stage Model for Behavioral Intervention Development and the FM Styles Framework were used in this study.In stage 0, families with condition-focused FM patterns were identified as at risk for poor problem solving. The 12-item Condition Management Ability scale of the FM Measures was selected as the screener to identify condition-focused maternal caregivers. Problem solving was identified as a potential mechanism for promoting behavior change. In stage 1, Bright IDEAS for Everyday Living was modified by integrating the FM Styles Framework creating Training in Problem Solving for Caregivers of Young Adult Survivors of Childhood Brain Tumors. Qualitative and quantitative assessments of feasibility and acceptability by maternal caregivers were excellent and used to improve selected areas of concern.Feedback from stakeholders indicates that Training in Problem Solving is a promising approach to shifting FM patterns and improving the functioning of caregivers, young adult survivors, and families.When developing interventions, the use of systemic methods can provide both clinically based and scientifically acceptable solutions. Those interventions based on both problem solving and FM are potentially promising but need further testing.

PURPOSE: Fighting cancer is a costly battle, and understanding the relationship between patient-reported financial toxicity (FT) and health outcomes can help inform interventions for post-treatment cancer survivors. METHODS: Stage I-III solid tumor, insured U.S. cancer survivors (N=103) completed a survey addressing FT (as measured by the standardized COST measure) and clinically relevant health outcomes (including health-related quality of life [HRQOL] and adherence to recommended survivorship health behaviors). Univariate and multivariate analyses were used to assess demographic and disease-specific correlates of FT, and to assess the predictive value of FT on HRQOL and adherence to survivorship health behaviors. RESULTS: Approximately 18% of respondents noted FT levels associated with significant financial burden. In univariate analyses, after correcting for multiple comparisons, greater FT was associated with unpartnered status, non-retirement and lower level of educational attainment. Greater FT was also significantly associated with HRQOL components of anxiety, fatigue, pain, physical functioning, and social functioning. FT was not significantly associated with any measured survivorship health behaviors. In multivariate analyses, FT was found to be a meaningful predictor of patient-reported anxiety, fatigue, physical functioning, and social functioning above and beyond theoretically and statistically relevant demographic characteristics. CONCLUSIONS: Although overall levels of FT were lower among cancer survivors in this sample, as compared with active treatment patients assessed in previous studies, financial burden continued to be a concern for a significant minority of cancer survivors and was associated with components of reduced HRQOL. Further research is needed to understand FT among underinsured survivors and those treated in community oncology settings. IMPLICATIONS FOR CANCER SURVIVORS: Incorporation of FT assessment into survivorship care planning could enhance clinical assessment of survivors’ FT vulnerability, help address the dynamic and persistent challenges of survivorship, and help identify those most in need of intervention across the cancer care continuum.

Six multidisciplinary cancer centers were selected and funded by the Merck Foundation (2017-2021) to collaborate in the Alliance to Advance Patient-Centered Cancer Care ("Alliance"), an initiative to improve patient access, minimize health disparities, and enhance the quality of patient-centered cancer care. These sites share their insights on implementation and expansion of their patient navigation efforts.Patient navigation represents an evidence-based health care intervention designed to enhance patient-centered care and care coordination. Investigators at 6 National Cancer Institute-designated cancer centers outline their approaches to reducing health care disparities and synthesize their efforts to ensure sustainability and successful transferability in the management of patients with cancer and their families in real-world health care settings.Insights are outlined within the context of patient navigation program effectiveness and supported by examples from Alliance cancer center sites: 1) understand the patient populations, particularly underserved and high-risk patients; 2) capitalize on the existing infrastructure and institutional commitment to support and sustain patient navigation; and 3) build capacity by mobilizing community support outside of the cancer center.This process-level article reflects the importance of collaboration and the usefulness of partnering with other cancer centers to share interdisciplinary insights while undergoing intervention development, implementation, and expansion. These collective insights may be useful to staff at other cancer centers that look to implement, enhance, or evaluate the effectiveness of their patient navigation interventions.

Adolescent and young adult (AYA) cancer survivors experience treatment-related late effects so guidelines recommend providing a treatment summary, yearly follow-up, and risk-adapted testing. AYA survivors' knowledge of surveillance follow-up was studied.Survey responses for 73 AYAs were stratified: low (0 to 1 correct; n=18; 24.7%) versus high knowledge (2 to 4 correct; n=55; 75.3%) of their required testing. Patient-reported Outcomes Measurement Information System (PROMIS) scores fell within average ranges for participant age ( T -scores: 52.4 for physical function, 49.3 for anxiety, 46.3 for depression, and 44.7 for fatigue). Younger age at survivorship visit was a significant predictors of improved knowledge scores.Despite attendance at a survivorship clinic, minority of participants (9.5%) demonstrated complete knowledge of surveillance testing needs. Most survivors are aware of some of their surveillance needs. PROMIS scores were not associated with surveillance knowledge.

Purpose Despite cure, adolescents and young adults (AYA) who complete cancer treatment remain at risk for numerous physical and psychological late effects. However, engagement in recommended follow-up care, knowledge of cancer treatment history and risks, and adoption of health promoting behaviors are often suboptimal. The pilot randomized controlled trial assessed the feasibility and acceptability of a text messaging intervention (THRIVE; Texting Health Resources to Inform, motiVate, and Engage) designed to promote well-being, and health knowledge and behaviors. Methods Sixty-one AYA who recently completed cancer therapy enrolled and were randomized to receive THRIVE (n = 31) or an AYA survivor handbook (n = 30). Participants from both groups completed baseline measures and follow-up surveys 16 weeks later. AYA randomized to THRIVE received one to two health-related text messages per day over 16 weeks. Results THRIVE demonstrated a high level of acceptability and feasibility. Exploratory analyses highlighted promising improvements in knowledge, fruit/vegetable intake, and perceptions of health vulnerability. Conclusions Text messaging is an acceptable and feasible intervention approach for improving well-being and health of AYA survivors. Future research is needed to test the impact of text messaging in a larger trial, including whether or not such an intervention can improve clinical outcomes, such as survivors' engagement in follow-up care.

This study aimed to elucidate experiences and preferences for survivorship care delivery among adolescent and young adult (AYA) childhood cancer survivors who experienced healthcare transitions. Eight focus groups were conducted with two groups of AYA survivors and their parents: (1) those who recently completed cancer treatment and are beginning follow-up care and (2) those who disengaged in follow-up care after the transition from pediatric to adult survivorship clinics. Interviewers used a structured interview guide that contained questions about perceptions and preferences for survivorship care models, resources, and tools (e.g., a survivorship care plan). We employed directed content analysis techniques to identify and organize relevant themes. Results of this study support six primary themes for optimizing survivorship care models for AYA: (1) improve knowledge of late effects and need for LTFU; (2) provide supportive services that help to address fear and uncertainty about health; (3) adapt survivorship care to be consistent with AYA developmental factors; (4) increase support surrounding healthcare transitions; (5) improve survivorship care communication and coordination between patients and families, and between providers; and (6) incorporate digital health tools. These groups represent vulnerable patient populations in AYA survivorship care and their perspectives highlight potential clinical and research priorities for enhancing long-term care models. Elucidating AYA and parent recommendations for survivorship care delivery can help to promote continuous engagement in care, target unmet needs, and promote health through survivorship models that are deemed acceptable to both patients and families.

Due to the complexity of cancer late effects, the education required to provide anticipatory guidance and support to the caregivers of adolescent and young adult (AYA) survivors of childhood brain tumors can be difficult. Therefore, identifying challenges to family management (FM) could be helpful in anticipating complications with the integration of tumor and treatment late effects into family life. Building on previous research that described FM for children with chronic conditions, children who survived cancer, and the Family Management Styles Framework, the purpose of this study was to identify FM challenges for caregivers of AYA survivors of childhood brain tumors to guide clinical practice and research. Directed content analysis was used to identify FM challenges in data from semistructured interviews with 45 maternal caregivers for AYA survivors of childhood brain tumors living with them. Caregivers were largely White (89%) with an average age of 52 years, educated beyond the high school level (67%), and were partnered or married (53%). On average, caregivers had been caring for the AYA for 21 years since diagnosis, and 56% of their survivors had moderate functional restrictions. A primary and a secondary analyst were assigned to the data for each interview and completed a single summary matrix. A list of challenges was created by the research team based on Family Management Styles Framework, the literature, and clinical expertise. Seven core challenges to FM were identified: ensuring survivor well-being, supporting survivor independence, encouraging sibling well-being, planning family activities, sustaining parents as caregivers, attending to survivor late effects, and providing support and advocacy.

INTRODUCTION: The public health imperative to reduce the burden of lung cancer has seen unprecedented progress in recent years. Realizing fully the advances in lung cancer treatment and control requires attention to potential barriers in their momentum and implementation. In this analysis, we present and evaluate the argument that stigma is a highly significant barrier to fulfilling the clinical promise of advanced care and reduced lung cancer burden. METHODS: This evaluation of lung cancer stigma is based on a multilevel perspective that incorporates the individual, persons in their immediate environment, the healthcare system, and the larger societal structure which shapes perceptions and decisions. We also consider current interventions and interventional needs within and across aspects of the lung cancer continuum, including prevention, screening, diagnosis, treatment, and survivorship. RESULTS: Current evidence suggests that stigma detrimentally impacts psychosocial, communication, and behavioral outcomes over the entire lung cancer control continuum and across multiple levels. Interventional efforts to alleviate stigma in the context of lung cancer show promise, yet more work is needed to evaluate their impact. CONCLUSIONS: Understanding and addressing the multi-level role of stigma is a crucial area for future study in order to realize the full benefits offered by lung cancer prevention, control, and treatment. Coordinated, interdisciplinary, and well-conceptualized efforts have the potential to reduce the barrier of stigma in the context of lung cancer and facilitate demonstrable improvements in clinical care and quality of life.

Chemotherapy-induced alopecia is a distressing side effect of cancer treatment. The aim of this registry study was to assess efficacy and tolerability of scalp hypothermia using Penguin Cold Caps (Penguin) in breast cancer patients. Hair loss was assessed by patients using a 100-point Visual Analog Scale (VAS) and by physicians using the 5-point Dean Scale at baseline, every 3–4 weeks during chemotherapy, and at least 1 month after completion of chemotherapy. The primary efficacy endpoint for success was defined as ≤50% hair loss by patient report (VAS) at follow-up (FUP). Tolerability and satisfaction were assessed by patient report. 103 patients enrolled between 7/2010 and 6/2015; 97 are evaluable for the primary endpoint. Chemotherapy included docetaxel/cyclophosphamide (TC; n = 50) for 4–6 cycles every 3 weeks, weekly paclitaxel for 12 weeks then doxorubicin/cyclophosphamide (P/AC; n = 23) for 4 cycles every 2–3 weeks, AC then paclitaxel (AC/P; n = 10), docetaxel/carboplatin ± trastuzumab (TCH; n = 4) for 4–6 cycles every 3 weeks. Overall, 61% of patients successfully prevented CIA; impact was regimen specific: TCH 100%, TC × 4 84%, TC × 5–6 50%, P/AC 43%, AC/P 20%. The most common toxicity was headache, reported by 78.5% of patients with mean pain level 37/100. Satisfaction among those who completed scalp cooling (SC) and FUP ranged from 74 to 100%. All patients who completed SC/FUP recommended Penguin. Scalp hypothermia with Penguin is effective in reducing alopecia, particularly for non-anthracycline-based shorter regimens. Penguin was well tolerated and viewed favorably by most patients.

Objective The development of the Transition Readiness Inventory (TRI) item pool for adolescent and young adult childhood cancer survivors is described, aiming to both advance transition research and provide an example of the application of NIH Patient Reported Outcomes Information System methods. Methods Using rigorous measurement development methods including mixed methods, patient and parent versions of the TRI item pool were created based on the Social-ecological Model of Adolescent and young adult Readiness for Transition (SMART). Results Each stage informed development and refinement of the item pool. Content validity ratings and cognitive interviews resulted in 81 content valid items for the patient version and 85 items for the parent version. Conclusions TRI represents the first multi-informant, rigorously developed transition readiness item pool that comprehensively measures the social-ecological components of transition readiness. Discussion includes clinical implications, the application of TRI and the methods to develop the item pool to other populations, and next steps for further validation and refinement.

ImportanceChemotherapy-induced alopecia is a common and distressing adverse effect. In previous studies of scalp cooling to prevent chemotherapy-induced alopecia, conclusions have been limited.ObjectivesTo evaluate whether use of a scalp cooling system is associated with a lower amount of hair loss among women receiving specific chemotherapy regimens for early-stage breast cancer and to assess related changes in quality of life.Design, setting, and participantsA prospective cohort study conducted at 5 US medical centers of women with stage I or II breast cancer receiving adjuvant or neoadjuvant chemotherapy regimens excluding sequential or combination anthracycline and taxane (106 patients in the scalp cooling group and 16 in the control group; 14 matched by both age and chemotherapy regimen). The study was conducted between August 2013 and October 2014 with ongoing annual follow-up for 5 years.ExposuresUse of a scalp cooling system. Scalp cooling was initiated 30 minutes prior to each chemotherapy cycle, with scalp temperature maintained at 3°C (37°F) throughout chemotherapy and for 90 minutes to 120 minutes afterward.Main outcomes and measuresSelf-estimated hair loss using the Dean scale was assessed 4 weeks after the last dose of chemotherapy by unblinded patient review of 5 photographs. A Dean scale score of 0 to 2 (≤50% hair loss) was defined as treatment success. A positive association between scalp cooling and reduced risk of hair loss would be demonstrated if 50% or more of patients in the scalp cooling group achieved treatment success, with the lower bound of the 95% CI greater than 40% of the success proportion. Quality of life was assessed at baseline, at the start of the last chemotherapy cycle, and 1 month later. Median follow-up was 29.5 months.ResultsAmong the 122 patients in the study, the mean age was 53 years (range, 28-77 years); 77.0% were white, 9.0% were black, and 10.7% were Asian; and the mean duration of chemotherapy was 2.3 months (median, 2.1 months). No participants in the scalp cooling group received anthracyclines. Hair loss of 50% or less (Dean score of 0-2) was seen in 67 of 101 patients (66.3%; 95% CI, 56.2%-75.4%) evaluable for alopecia in the scalp cooling group vs 0 of 16 patients (0%) in the control group (P

74 Background: Survivorship self-management, including adherence to survivorship care plans (SCPs), is variable, especially among adolescents and young adults (AYA). Methods:The present study describes the development of a mobile application (app) for AYA survivors (AYA STEPS), which strives to improve survivorship self-management via a combined texting self-management program (THRIVE 2.0) and an electronic survivorship care plan generator (Smart-ALACC [Smart-Adult Living After Childhood Cancer], hosted on Oncolink.org). Results: AYA STEPS was developed by modifying an existing disease management app, LSTCare. The main feature of the app is the delivery of two-way text messages that are tailored to an individual’s SCP. The messages are designed to enhance uptake of the SCP with information, strategies for adherence, motivational messages, and appointment reminders. Patients may also text back with questions. The SCP and its related text information are customized based on input of patient characteristics and treatment history, such as age, time off treatment, and type of treatment (e.g., anthracycline chemotherapy, mediastinal radiation, cranial radiation). The app also houses a copy of the complete SCP document. The SCP is generated, via patient or provider, via an electronic platform that incorporates patient demographic information, cancer diagnosis, and cancer treatments received with checklist of options. Feedback on the app was provided by AYA ages 15 to 21 via a focus group (n = 5) and interviews (n = 5), through which qualitative data were collected. AYA reported high acceptability of a mHealth intervention to improve self-care as cancer survivors, especially the inclusion of tailored content from an individualized SCP as text messages. They also reported the app as feasible to download and maintain on their phones. Conclusions: We are about to begin a RCT that will test adherence to SCP for those who received the app and the SCP versus the SCP alone. We will report details of the app and the launch of the RCT. We expect high acceptability and feasibility with measured benefit to receiving the self-management app.

Social interactions in rodents are rewarding and motivating and social isolation is aversive. Accumulating evidence suggests that disruption of the social environment in adolescence has long-term effects on social interactions, on anxiety-like behavior and on stress reactivity. In previous work we showed that adolescent isolation produced increased reactivity to acute and to repeated stress in female rats, whereas lower corticosterone responses to acute stress and decreased anxiety-related behavior were noted in isolated males. These results indicate a sex specific impact on the effects of social stress in adolescence. However, little is known about whether social isolation impacts behaviors related to affect and whether it does so differently in male and female rats. The present study investigated the impact of adolescent social isolation from day 30-50 of age in male and female Sprague Dawley rats on behavior in the forced swim test at the end of adolescence and in adulthood and on behavior in the sucrose preference test in adulthood. Adult female rats that were isolated in adolescence exhibited increased climbing on the first and second day of the forced swim test and showed an increased preference for sucrose compared to adult females that were group-housed in adolescence. There were no effects in male rats. The results indicate that social isolation in adolescence produces a stable and active behavioral phenotype in adult female rats.

9518 Background: Alopecia is an emotionally traumatic side effect for breast cancer (BC) patients (pts) undergoing adjuvant chemotherapy (CTX). The DigniCap System is the first scalp cooling system...