High-quality Survivorship Care Research Articles

Abstract PS18-08: Bridging Disparities in Survivorship Care: Leveraging Telehealth for Diverse Patients in Safety Net Hospital

Abstract Background There are 3.8 million breast cancer survivors (BCS) in the United States and 67-88% of them report unmet needs in survivorship care. With advancements in breast cancer treatment and improved survival rates, there is a growing need to expand survivorship care to address the long-term physical, psychosocial, and medical needs of cancer survivors. There is a significant disparity in access to high-quality survivorship care, particularly for diverse patient populations in safety net hospitals. BCS in marginalized communities experience worse health-related quality of life (HRQOL) outcomes following cancer treatment in the management of symptoms, complications of treatment, and overall health-related distress. Thus, new models that leverage complex care management principles and novel care delivery systems, such as telehealth, are needed to provide multidisciplinary care and support for self-management. Methods We conducted a single-arm, pilot intervention trial of telehealth group medical visits (tGMV) in a safety net hospital serving low-income and racially and ethnically diverse BCS. The study team included physicians, advanced practitioners, PCPs, clinical psychologists, nurses, dieticians, exercise instructors, Traditional Chinese Medicine practitioners, sexual health counselors, research coordinators, and patient navigators. We enrolled a total of 6 cohorts of 7-10 BCS for the tGMV intervention (2 cohorts each in English, Spanish, and Cantonese). Each cohort had four weekly sessions on the following topics: 1) Reclaiming your health after cancer, 2) Managing emotional health, 3) Sexual health and relationship, and 4) Food is medicine. All participants were trained on the telehealth video conference platform. The curriculum was culturally adapted in the Spanish and Cantonese cohorts. Study staff followed up with participants by phone after each session. We evaluated feasibility and acceptability as primary outcomes with prespecified thresholds for >90 % completion of planned sessions and >70% attendance. Participants’ evaluation of the intervention and self-efficacy were secondary outcomes, which are not reported in this abstract. Results Fifty-three women with stage I-III breast cancer were enrolled in the study. The age was 37 to 75 (median: 58). There were 14 (26%) English-speaking participants, 19 (36%) Spanish-speaking participants, and 20 (38%) Cantonese-speaking participants. Eight (15%) participants identified as White, three (5.7%) Black A/A, 23 (43%) Asians, and 19 (36%) Hispanic; 43 (81%) participants were foreign-born. Twenty-seven (51%) participants reported food insecurity on the screening survey. The overall attendance rate was 98% (English: 97%, Spanish: 97%, and Cantonese: 100%). Of the 53 participants, 41 (77%) found the telehealth format acceptable, 47 (88%) agreed/strongly agreed that it was easy to log in and stay connected, 53 (100%) agreed/strongly agreed that tGMV were a good use of their time, 52 (98%) understood the purpose of the telehealth format, and 50 (94%) felt the information was easy to understand. Conclusions Telehealth-delivered group medical visits are feasible and acceptable in a safety net setting and are a promising intervention that may help in addressing the unmet needs of cancer survivors. We also found that despite the reported low uptake of telehealth in safety net settings, emphasis on training and technical support during sessions can increase the utilization of telehealth. Citation Format: Ivan Leung, Evelin Trejo, Ana Velázquez Mañana, Elizabeth Castillo, Barbara Cicerelli, Robin McBride, Piera Wong, Huiyu Xie, Lily Zhang, Nancy Burke, Niharika Dixit. Bridging Disparities in Survivorship Care: Leveraging Telehealth for Diverse Patients in Safety Net Hospital [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PS18-08.

The association between a patient-centered quality of care index and self-efficacy among cancer survivors.

The number of cancer survivors in the US surpassed 18.1 million in 2022 and this number continues to grow. Patient self-efficacy, a patient's confidence in his or her ability to self-manage symptoms and healthcare concerns, has been linked to improved health outcomes. We thus set out to examine the association between a patient-centered care quality index and self-efficacy among cancer survivors. Data from 777 survivors of breast, prostate, and colorectal cancers at 32 cancer centers nationwide were collected 6months after an initial survivorship visit. Patients completed surveys assessing patient-centered care (36 items under seven factors) and individual self-efficacy (eight items). Multiple linear regression was used to examine the association between patient-centered care and patient self-efficacy, adjusting for demographics, cancer-related characteristics, and organizational characteristics of high-quality patient-centered survivorship care. In descriptive analyses, there were no statistically significant differences in demographic or cancer-related characteristics between cancer survivors by quality of patient-centered care. In regression models, a one-unit increase in patient-centered care was associated with a 0.23 (95% CI 0.14-0.32) increase in mean self-efficacy compared to low quality of patient-centered care when adjusting for demographics, cancer-related characteristics, and indicators of high-quality survivorship care. Individually, four of the seven factors of quality patient-centered care were statistically significantly associated with greater self-efficacy. Having a medical home was associated with the greatest increase in self-efficacy among survivors. Our findings indicate that higher quality patient-centered care is associated with greater cancer survivor self-efficacy. Given that self-efficacy is correlated with improved health outcomes and quality of life, this finding further supports the importance of high-quality patient-centered survivorship care. High-quality patient-centered survivorship care was associated with higher patient self-efficacy. This association should further be explored among cancer survivors with diverse characteristics.

Changes in primary care engagement and communication from breast cancer treatment to longer-term survivorship.

475 Background: Primary care physicians (PCPs) have varying roles in a patient’s care across the cancer continuum. However, little is known about how PCP engagement and communication change over time in the transition from breast cancer treatment to longer-term survivorship. Methods: The iCanCare study is a longitudinal study of women diagnosed with breast cancer in 2014-15 identified in the Los Angeles and Georgia Surveillance, Epidemiology and End Results registries. Women were surveyed during initial treatment and again 6 years later during survivorship (2021-22) (Expected final N=1430, 60% current response rate). At both time points, respondents were asked to rate on a 5-point Likert scale, how often they talked with their PCP about their breast cancer follow up (communication), and how informed their PCP was about their breast cancer (engagement). Scores ³3 during initial treatment were considered strong. We then evaluated change in PCP engagement and communication over time from initial treatment to survivorship, with decreases reflecting worse engagement and communication. We evaluated factors associated with worse engagement and communication using multi-variable logistic regression modeling, adjusted for clinical and sociodemographic characteristics, PCP relationship, baseline communication/engagement, and COVID-19 impact. Results: In this sample of 807 women, most women reported strong PCP engagement (62.7%) and strong PCP communication (58.6%) during treatment. Over time, 40.4% reported worse PCP communication and 38.5% reported worse PCP engagement in survivorship compared to treatment(p<0.0001). Women who had comorbidities and women who changed their PCP between treatment and survivorship more commonly reported worse communication and engagement (p<0.05). Fewer women who had chemotherapy reported worse engagement and more Black and Asian women reported worse communication (p<0.05). Women who changed their PCP were more likely to report worse communication than women with the same PCP (adjusted Odds Ratio (aOR) 2.52, 95%CI: 1.52, 4.19). Women who had chemotherapy (vs. not) were less likely to report worse communication over time (aOR 0.59 CI 0.37, 0.95). Women who changed their PCP had higher odds of worse engagement over time compared to those with the same PCP (aOR 1.69, 95%CI: 1.05, 2.72). Women who had chemotherapy (vs. not) were less likely to have worse PCP engagement over time (aOR 0.59, 95%CI: 0.37, 0.92). Conclusions: In this population-based sample of breast cancer survivors, many women experienced worse communication and engagement with their PCP over time in survivorship, despite reporting high engagement and communication during initial treatment. Effective engagement and communication are key to delivery of high-quality survivorship care, thus future work focused on maintaining survivor-PCP relationships over time is needed.

Benefits of a novel automated digital platform to support cancer survivorship.

482 Background: Advances in treatment and early diagnosis have led to an increase in the 5-year relative survival rate for patients diagnosed with cancer. As of January 2022, there were 18.1 million cancer survivors in the United States, reflecting 5.4% of the total population. This number is projected to increase by 24.4%, to 22.5 million by 2032 (Cancer Facts and Figures 2023- American Cancer Society). Survivorship program needs include surveillance, member/ patient engagement, lifestyle changes and symptom management. Survivorship appointments make up >50% of the total return visits in oncology. There is a dire need for easy-to-use technology tools to help deliver high-quality survivorship care. Methods: We developed rules to automatically create a cohort of patients with Stage II and III colon cancer. The surveillance plan was developed by experts based on national guidelines. A separate set of rules drives the automatic generation of due dates for all elements of the care plan including laboratory tests, radiology examinations and clinical evaluations. A real-time dashboard clearly shows the care gaps. Tools were added to the dashboard to help with task completion. Results: The platform was successfully rolled out to 21 medical centers in Kaiser Permanente Northern California, an integrated healthcare system providing care for 4.4 million members. We experienced an increase in the completion for each of the surveillance elements needed for patients. Laboratory tests increased by 12.5%, radiology examinations by 8%, and clinical evaluations by 16%. Results have been sustained over the first year of use. Conclusions: We have successfully developed and operationalized a digital platform to sustainably support survivorship. This platform automatically identifies our survivorship cohort, informs the care team when care gaps exist and provides tools for task completion. Our care teams have used this platform successfully to outreach patients to ensure timely surveillance. This automatic platform reduces manual, redundant tasks previously performed by the care team. Further research is needed to explore the potential for this systems-based approach to reduce disparities in care. We plan to expand this to other cancers. Planned enhancements include automatic member reminders, lifestyle recommendations and symptom management.[Table: see text]

A Scoping Review Exploring Access to Survivorship Care for Childhood, Adolescent, and Young Adult Cancer Survivors: How Can We Optimize Care Pathways?

Childhood, adolescent, and young adult (CAYA) cancer survivors are at risk of developing late effects associated with their cancer and its treatment. Survivors' engagement with recommended follow-up care to minimize these risks is suboptimal, with many barriers commonly reported. This scoping review aims to summarize the barriers to accessing follow-up care, using the dimensions of Levesque's framework for accessing healthcare. We retrieved quantitative studies addressing barriers and facilitators to accessing survivorship care in CAYA survivors from PubMed, EMBASE and CINAHL. Data was categorized into the five healthcare access dimensions outlined in Levesque's framework: i) approachability, ii) acceptability, iii) availability and accommodation, iv) affordability, and v) appropriateness. We identified 27 quantitative studies in our review. Commonly reported barriers to accessing care included a lack of survivor and provider knowledge of cancer survivorship, poor health beliefs, low personal salience to engage in follow-up care, high out-of-pocket costs and survivors living long distances from clinical services. Many studies reported increased barriers to care during the transition from paediatric to adult-oriented healthcare services, including a lack of developmentally appropriate services, lack of appointment reminders, and a poorly defined transition process. Healthcare-related self-efficacy was identified as an important facilitator to accessing follow-up care. The transition from pediatric to adult-oriented healthcare services is a challenging time for childhood, adolescent, and young adult cancer survivors. Optimizing CAYAs' ability to access high-quality survivorship care thus requires careful consideration of the quality and acceptability of services, alongside financial and physical/practical barriers (eg distance from available services, appointment-booking mechanisms). Levesque's model highlighted several areas where evidence is well established (eg financial barriers) or lacking (eg factors associated with engagement in follow-up care) which are useful to understand barriers and facilitators that impact access to survivorship for CAYA cancer survivors, as well as guiding areas for further evaluation.

OUTC-09. PEDIATRIC LOW GRADE GLIOMA SURVIVORS’ NEED FOR SURVIVORSHIP CARE: ‘ENGAGE’ A MULTIDISCIPLINARY, E-HEALTH INTERVENTION

Abstract Higher survival rates for children diagnosed with low-grade gliomas (LGG), compared to other brain cancers, often limit the survivorship resources afforded this cohort, despite potential long-term physical, functional and psychological impacts. We conducted a two-phase program of research, first evaluating LGG survivors’ need for support during the survivorship phase, followed by the development and pilot evaluation of a multidisciplinary, telehealth, survivorship program. Phase 1: We conducted a retrospective cohort study of children aged 0-16 years at diagnosis, diagnosed between 2000-2015, assessing psychosocial impact and quality of life. Phase 2: We developed ‘Engage Brain’, a multidisciplinary, telehealth program, designed to improve medical and psychosocial outcomes for childhood cancer survivors throughout their lifespan. Key components of Engage’s design include distance-delivered care to ensure access for all survivors irrespective of whether they live close to a tertiary, survivorship center; hospital-based expertise integrated with local, primary care services to ensure a model of care which is sustainable long-term; nurse-led care providing tailored education to encourage adoption of a prevention-focused healthy lifestyle to mitigate survivors’ personal risk and reduce ongoing costs to the individual and healthcare system; psychosocial focus, incorporating allied health staff (psychologist/social worker) as an integral aspect of care. Phase 1: 45 survivors participated (36% female, mean age 14.8 years, average 7.5 years post-treatment). Survivors reported high levels of anxiety (23%), depression (14%), fatigue (62%). Phase 2: 30 LGG survivors completed Engage Brain intervention (50% female, mean age 21 years, average 11.5 years post-treatment). 64% uptake, 10% attrition. Most (78%) of participants ‘agree’-‘greatly agree’ that Engage Brain provides ‘high-quality survivorship care’ and ‘help accessing survivorship care’. This program of research illustrates the long-term needs of LGG survivors, despite their lower risk status compared to other brain cancers, and the feasibility of providing a multidisciplinary, telehealth intervention to support them.

Breast cancer survivorship care: a narrative review of challenges and future directions.

Breast cancer (BC) is the most prevalent cancer among women worldwide. With a growing number of BC survivors (BCSs), the number of survivors who require highquality survivorship care is increasing. Various recommendations have been proposed for survivorship care plans (SCPs). However, globally, limited progress has been made to implement these recommendations consistently in cancer care centers. This review explores the gaps and challenges that exist in BC survivorship care (BCSC) and proposes future directions for improving survivorship care for patients and the healthcare system. Current literature on BCSC was searched using PubMed and Google Scholar. The search strategy utilized a combination of keywords related to BCSC, gaps in survivorship care, and health promotion. Retrievable and English articles from January 2000 to March 2024 were included in the review. Despite the large number of guidelines and recommendations on best BCSC practices, only a small number of these have been translated into clinical practices that help streamline patient care. There are many gaps to the provision of high-quality survivorship care, all of which negatively affect patient outcomes. Some of these gaps include but are not limited to: the limited role of primary care providers (PCPs), lack of coordination of care, lack of evidence-based research, insufficient data on health promotion, and challenges implementing comprehensive care. These findings indicate the need for a holistic and personalized approach to BCSC. The importance of implementing a multi-disciplinary and coordinated approach to survivorship care has been emphasized. This includes further involvement of PCPs, through increased training for PCPs in survivorship care. Despite available models of survivorship care, further research is needed to determine optimal BCSC that improves patient outcomes while decreasing the strain on the healthcare system. Additionally, technology can play a beneficial role in survivorship care, especially through telehealth and artificial intelligence (AI). Nonetheless, further research is needed on BCSC.

ESMO Expert Consensus Statements on Cancer Survivorship: promoting high-quality survivorship care and research in Europe

The increased number of cancer survivors and the recognition of physical and psychosocial challenges, present from cancer diagnosis through active treatment and beyond, led to the discipline of cancer survivorship. Herein, we reflected on the different components of survivorship care, existing models and priorities, in order to facilitate the promotion of high-quality European survivorship care and research. We identified five main components of survivorship care: (i) physical effects of cancer and chronic medical conditions; (ii) psychological effects of cancer; (iii) social, work and financial effects of cancer; (iv) surveillance for recurrences and second cancers; and (v) cancer prevention and overall health and well-being promotion. Survivorship care can be delivered by structured care models including but not limited to shared models integrating primary care and oncology services. The choice of the care model to be implemented has to be adapted to local realities. High-quality care should be expedited by the generation of: (i) focused and shared European recommendations, (ii) creation of tools to facilitate implementation of coordinated care and (iii) survivorship educational programs for health care teams and patients. The research agenda should be defined with the participation of health care providers, researchers, policy makers, patients and caregivers. The following patient-centered survivorship research areas were highlighted: (i) generation of a big data platform to collect long-term real-world data in survivors and healthy controls to (a) understand the resources, needs and preferences of patients with cancer, and (b) understand biological determinants of survivorship issues, and (ii) develop innovative effective interventions focused on the main components of survivorship care. The European Society for Medical Oncology (ESMO) can actively contribute in the efforts of the oncology community toward (a) promoting the development of high-quality survivorship care programs, (b) providing educational material and (c) aiding groundbreaking research by reflecting on priorities and by supporting research networking.

Prostate cancer survivor capacity to engage in survivorship self-management: a comparison of perceptions between oncology specialists, primary care, and survivors.

The rapidly increasing number of prostate cancer survivors in tandem with a forthcoming shortage of oncology specialists in our health system poses a barrier to ensuring that high-quality survivorship care is available to support this population. As such, there is a need to consider ways to optimize survivorship care, while taking health system constraints into account. The purpose of this study is to explore the perceptions of survivorship self-management between oncology specialists, primary care providers (PCPs), and survivors themselves. A single cross-sectional survey, relating to how prostate cancer survivorship care could be improved, was administered to each group. Two hundred forty-three participants (N = 206 survivors, N = 10 oncology specialists, N = 27 PCPs) completed the study survey. Most PCPs (90%) and oncology specialists (84%) perceived that an opportunity for prostate cancer survivors to have an expanded role in their care would be beneficial. Nearly half (49%) of survivors reported that it would be beneficial to have an expanded role in their survivorship care with only 11% indicating that it would not be beneficial at all. Barriers to developing this model involve limited oncology specialist time to execute survivorship plans, limited communication between oncology specialists and PCPs, and a lack of primary care and survivor education targeted specifically to prostate cancer survivorship.

Unmet needs of 1210 Chinese breast cancer survivors and associated factors: a multicentre cross-sectional study

BackgroundBreast cancer survivors (BCSs) often have potential unmet needs. Identification of the specific needs of BCSs is very significant for medical service provision. This study aimed to (1) investigate the unmet needs and quality of life (QoL) of BCSs in China, (2) explore the diverse factors associated with their unmet needs, and (3) assess the association between their unmet needs and QoL.MethodsA multicentre, cross-sectional survey was administered to 1210 Chinese BCSs. The Cancer Survivor Profile-Breast Cancer and the Functional Assessment of Cancer Therapy-Breast scale were administered to survivors who gave informed consent to participate. Data were analysed using t-test, ANOVA, multiple regression analysis, and Pearson correlations.ResultsThe 1192 participants completed questionnaires (response rate 98.51%). Our study reveals that the most prevalent unmet needs were in the ‘symptom burden domain’. The unmet needs of BCSs depend on eleven factors; age, time since diagnosis, education level, occupation, payment, family income status, stage of cancer, treatment, family history of cancer, pain, and physical activities. To ensure the provision of high-quality survivorship care and a high satisfaction level, more attention should be paid to actively identifying and addressing the unmet needs of BCSs. The problem areas identified in the Cancer Survivor Profile for breast cancer were negatively associated with all subscales of QoL except the health behaviour domain, with the correlation coefficient ranging from − 0.815 to − 0.011.ConclusionChinese BCSs exhibit a high demand for unmet needs in this study, and the most prevalent unmet needs were in the ‘symptom burden domain’. There was a significant association between patients’ unmet needs (as defined in the Cancer Survivor Profile for breast cancer) and QoL. Future research should focus on enhancements to survivorship or follow-up care to address unmet needs and further improve QoL.

Optimizing cancer survivorship in primary care: patient experiences from the Johns Hopkins Primary Care for Cancer Survivors clinic.

PurposeThe optimal delivery of survivorship care, particularly within primary care, remains poorly understood. We established the Johns Hopkins Primary Care for Cancer Survivors (PCCS) clinic in 2015 to address care challenges unique to cancer survivors. To better understand the care from the PCCS clinic, we interviewed patients about their perception of care delivery, survivorship care, and care coordination.MethodsWe conducted semi-structured interviews with adult survivors of any cancer type seen in the PCCS clinic. A priori and in vivo coding of verbatim transcripts was part of the thematic analysis.ResultsSeventeen cancer survivors were interviewed (ages 37–78). Themes that emerged were (1) optimal care and (2) the PCCS experience. Subthemes respectively included the ideal role of the primary care provider (1), telehealth/COVID-19 challenges and opportunities (1), patient-derived value from the PCCS clinic (2), and improving the PCCS model (2). Overall, PCCS patients expected and experienced high-quality, comprehensive primary care by providers with cancer survivorship expertise. Patients reported telehealth benefits and challenges for survivorship care during the COVID-19 pandemic.ConclusionsPCCS patients perceived receiving high-quality primary care and valued being seen in a primary care–based survivorship clinic. The PCCS clinic can serve as a model of primary care–based cancer survivorship.Implications for Cancer SurvivorsIdeal primary care provider roles and care coordination are important factors for high-quality survivorship care and can be provided by a specialized cancer survivorship clinic in primary care.Supplementary InformationThe online version contains supplementary material available at 10.1007/s11764-022-01166-3.

Understanding the Attitudes and Beliefs of Oncologists Regarding the Transitioning and Sharing of Survivorship Care.

Transitioning survivorship care from oncologists to primary care physicians (PCPs) is a reasonable alternative to oncologist-led care. This study assessed oncologists’ attitudes and beliefs regarding sharing/transitioning survivorship care. A prospective survey of oncologists within a regional cancer program assessing self-reported barriers and facilitators to sharing/transitioning survivorship care was disseminated. In total, 63% (n = 39) of surveyed oncologists responded. Patient preference (89%) and anxiety (84%) are key to transition of care decisions; reduced remuneration (95%) and fewer longitudinal relationships (63%) do not contribute. Oncologists agreed that more patients could be shared/transitioned. Barriers include treatment-related toxicities (82% agree), tumor-specific factors (60–90% agree) and perception of PCP willingness to participate in survivorship care (47% agree). Oncologists appear willing to share/transition more survivors to PCPs, though barriers exist that warrant further study. Understanding these issues is critical to developing policies supporting comprehensive survivorship care models that address both cancer and non-cancer health needs. The demonstrated feasibility of this project warrants a larger-scale survey of oncologists with respect to the transition of survivorship care to PCPs, to further inform effective interventions to support high-quality survivorship care.

Implementation of “Epic Healthy Planet” registry for survivorship care coordination.

337 Background: The evolving Commission on Cancer (CoC) reporting mandate and institution’s growing survivorship program led to identifying the need for systematic tracking of survivorship patients, surveillance tests, return appointments and referrals placed. Our aim was to develop an electronic medical record (EMR) integrated registry utilizing discrete data fields to assist our team in tracking key elements of high-quality survivorship care. Methods: Stakeholders from our survivorship team (APP/RN), medical oncology, psychology, research, operations and IT analytics reached consensus on essential discrete EMR fields to be included in the registry. For implementation we utilized the EPIC module, “Healthy Planet”, where patients enter the registry by initiating an “Episode of Care” at their initial survivorship visit. SmartForm fields create unique discrete patient data points identified by the stakeholders. Results: The following domains were identified as important elements of care that require tracking in a dedicated survivorship program. The registry domains populate from two sources: 1) currently existing EMR data fields, 2) domains with no currently discrete data (e.g. lymphedema, peripheral neuropathy) were captured in the developed SmartForm (see Table). From January 1, 2019 to June 1, 2021, 778 patients were entered into the registry. Since September 4, 2020, 112 patient follow-up appointment reminders were sent via EMR which has led to a noticeable increase in return appointments. SmartForm data fields are being amended as additional malignancy types are added to our survivorship program. Conclusions: The utilization of Healthy Planet is an effective and user-friendly way to track survivorship return appointments, remind providers of diagnostic tests that are due, and track referrals for CoC reporting. As the numbers of cancer survivors continues to increase, systematic population management tools are essential to ensure adherence to survivorship guideline recommendations, follow-up care and mandatory reporting.[Table: see text]

Defining and measuring quality cancer survivorship care: An environmental scan.

219 Background: It is recognised that current models of survivorship care are suboptimal and unsustainable. The landmark Institute of Medicine (IOM) report ‘From Cancer Patient to Cancer Survivor: Lost in Transition’ suggested four essential components of survivorship care: prevention of recurrent and new cancers; surveillance for recurrent or second cancers; intervention for consequences of cancer and its treatment, and coordinated care between health providers. The report also recommended “quality of survivorship care measures should be developed... and quality assurance programs implemented to monitor and improve the care that all survivors receive.” Nekhlyudov et al (JNCI 2019) built on the IOM’s recommendations to develop a quality of cancer survivorship care framework. We undertook an environmental scan to understand how quality survivorship care is conceptualised internationally, and what metrics are available. Methods: This scan comprised limited literature review, review of organisations’ websites, and expert consultation to source documents that described and measured quality survivorship care. Documents were assessed against the domains proposed by Nekhlyudov et al. Metrics were categorised as policy, process or outcome measures. Results: The search yielded 40 documents from six countries. There was agreement that quality survivorship care is founded on the IOM elements, expanded by Nekhlyudov et al. The review also noted risk stratification/personalised pathways of care and patient self-management as other elements of quality care. Many countries have proposed or implemented quality measures, with greater emphasis on processes over outcome assessments. Only the USA was found to have implemented policy measures. In the process domain, frequently reported metrics included completion of needs assessments and survivorship care plans, and adherence to recommended follow up guidelines. Regarding outcome measures, patient-reported outcomes and experiences were commonly proposed, however there was a lack of specific elements, or recommended instruments. Conclusions: There is broad agreement on what constitutes quality survivorship care internationally. Future work should consider policy or structural elements that support optimal care. Findings from this scan will inform a modified reactive Delphi study to establish consensus-based criteria for high quality survivorship care. Additional work should consider how to define and implement metrics of quality care, and how to use metrics to improve survivors’ outcomes.

Late and Long-Term Treatment-Related Effects and Survivorship for Head and Neck Cancer Patients.

The demographics of head and neck cancer (HNC) survivors are changing, contributing to a growing number of survivors and a greater length of survivorship. Curative treatment involves intense multimodal therapy, which contributes to both short-term toxicities and long-term treatment-related effects. Delivering high-quality, relevant cancer survivorship care is a growing national priority. Various survivorship models and tools, such as survivorship care plans, have been utilized in an attempt to enhance care and optimize outcomes. However, an essential, yet understudied, component of high-quality survivorship care is the identification and management of late and long-term treatment-related effects. In this article, we will describe the current advancements in survivorship care as well as the research related to late and long-term treatment effects. While there is a growing body of literature that describes the prevalence of treatment-related effects and their impact on quality of life, more work is needed. Research that investigates the interplay of these complex treatment effects, the biological mechanisms that contribute to their variability, and interventions designed to mitigate them are desperately needed. While de-intensification offers the potential to alleviate these effects for future survivors, we need clinically meaningful assessment tools and therapies to provide the survivors we evaluate and treat daily. Targeted patient-reported outcomes and objective measures validated through clinical research are needed to help us systematically identify and treat late and long-term effects. In order to tailor and optimize the care we provide to our HNC survivors, we will need to leverage these tools as well as the expertise of all members of our multidisciplinary survivorship teams.

Abstract IA26: The need for evidence-based survivorship care

Abstract The 5-year survival for children with cancer has increased enormously. However, years after treatment, childhood cancer survivors are at high risk for developing health and psychosocial long-term side effects due to their previous cancer treatment. The impacts on morbidity, mortality, and society are significant. These impacts can be reduced by optimal long-term follow-up of survivors. Survivorship care that is focused on the detection of treatable disease at an early phase will improve quality of life of survivors by timely interventions. The International Guideline Harmonisation Group (ighg.org) developed evidence-based guidelines for many late effects. However, implementing these guidelines has proven challenging. The availability of follow-up care for adult survivors varies considerably, and many clinics do not offer survivorship care for adult survivors of childhood cancer. High-quality survivorship care requires a multidisciplinary care infrastructure, implementation of guidelines, and development of a survivorship care plan with a detailed summary of treatment and specific knowledge on late effects. This presentation will focus on the translation of knowledge to guidelines and the need for survivorship care. Citation Format: Leontien Kremer. The need for evidence-based survivorship care [abstract]. In: Proceedings of the AACR Special Conference on the Advances in Pediatric Cancer Research; 2019 Sep 17-20; Montreal, QC, Canada. Philadelphia (PA): AACR; Cancer Res 2020;80(14 Suppl):Abstract nr IA26.

Identifying patients' priorities for quality survivorship: conceptualizing a patient-centered approach to survivorship care.

This study explored cancer survivors' experiences with and priorities for cancer survivorship care to describe a patient-centered approach to quality survivorship care. We conducted 22 focus groups with 170 adult survivors of breast, prostate, and colorectal cancer from six cities across the country and online. We used thematic analysis to identify participants' principles and priorities for quality survivorship care. Based on our analysis of a limited group of cancer survivors, we identified two core principles that underlie participants' expectations for survivorship care and 11 practice priorities that reflect opportunities to improve patient-centeredness at the individual, interpersonal, and organizational levels. The principles reflect participants' desire to be better prepared for and equipped to accept and manage their chronic care needs post-cancer treatment. The priorities reflect practices that patients, providers, and cancer centers can engage in to ensure survivors' goals for post-treatment care are met. Results from the study suggest the need to expand conceptualization of high-quality survivorship care. The survivor principles and practice priorities identified in this study challenge the field to organize amore patient-centered survivorship care system that empowers and respects patients and provides a holistic approach to survivors' chronic and long-term needs. Quality cancer survivorship care must reflect patients' priorities. The findings from this study can be used to develop a patient-centered framework for survivorship care that can be used in conjunction with quality guidelines to ensure survivorship care is organized to achieve both clinical and patient-centered outcomes.

Associations between patient-reported outcomes and physiatry assessments in an integrative model of a survivorship clinic.

e14032 Background: The Institute of Medicine and Commission on Cancer recommends delivery of comprehensive survivorship care to all cancer survivors. While models exist for high-quality survivorship care, institutions encounter barriers such as lack of resources and training in cancer survivorship. We introduce a shared-care model with physical medicine and rehab (PM&R) to provide comprehensive care to cancer survivors at MedStar Washington Hospital Center. Methods: We implemented a bimonthly survivorship clinic in September 2018, staffed by a medical oncologist, oncology fellow and a cancer rehabilitation fellow. We assessed patient reported outcomes through PROMIS short forms for physical functioning, companionship, satisfaction with social roles and depression. Physiatry assessments included the 6-minute walk test and the Timed Up and Go test. All patients received a treatment summary and survivorship care plan. Results: We evaluated 30 cancer survivors between Sept 2018 and December 2019; mean age was 55.6 years (SD = 10.6 years). Majority were female (60%) and Black (60%). Most patients were overweight or obese (93%) with a mean body mass index of 30.6 mg/m2 (SD = 4.7). Breast (43%) and hematologic malignancy (33%) were the most common cancer diagnoses. The median time between cancer remission and the clinic visit was 16 months (Range = 1 to 65 months). The average score for Timed Up and Go test was within the reference normal value of < 12 sec (8.22 seconds, n = 23). Average distance for the 6-minute walk test was 465.87 meters (n = 18). Survivor age was negatively correlated with the distance walked for the 6-min walk test (r = -0.51, p = 0.027). Better psychosocial functioning assessed with PROMIS were significantly associated with lower scores on the Timed Up and Go Test: satisfaction with social roles (r = -0.67, p = 0.033) and companionship (r = -0.64, p = 0.046); we identified a trend between Timed Up and Go scores and depression (r = 0.47, p = 0.099). Conclusions: An integrative survivorship clinic to provide multidisciplinary survivorship care is a feasible model and results suggest that patients’ physical functioning is significantly associated with psychosocial outcomes. Our approach highlights the importance of assessing both physical functioning and patient-reported outcomes. Future research can evaluate assessments of these outcomes over time.

CANCER SURVIVORSHIP – MORE THAN JUST SURVIVING CANCER

Survivorship care is an essential component of high-quality cancer care due to rising cancer incidence, survival and the recognition of unique health challenges cancer survivors face. Primary care practitioners (PCP) have played pivotal roles in cancer survivorship in the community in first world settings, and current evidence suggest that PCPs can provide more cost-effective and equally safe surveillance care to cancer survivors with no difference in recurrence rates, time to detection of recurrence, mortality and health-related quality of life, compared to specialists. High quality survivorship care is best delivered using a collaborative approach between tertiary based specialists and community-based PCPs.

Toward equitably high-quality cancer survivorship care.

Although models of cancer survivorship care are rapidly evolving, there is increasing evidence of health disparities among cancer survivors. In the current context, Canada's survivorship care systems privilege some and not others to receive high-quality care and optimize their health outcomes. The aim of this study was to improve survivorship care systems by helping clinicians and decision makers to a better understanding of how various psychosocial/political factors, survivors' health experiences and health management strategies might shape the development of and access to high-quality survivorship care for Canadians with cancer. Using a nursing epistemological approach informed by critical and intersectional perspectives, we conducted a three-phased Interpretive Description study. We engaged in critical textual analysis of documentary sources, a secondary analysis of interview transcripts from an existing database, and qualitative interviews with 34 survivors and 12 system stakeholders. On the basis of these data, we identified individual, group, and system factors that contributed to gaps between survivors' expected and actual survivorship care experiences. By understanding what shapes survivorship care systems and resources, we help illuminate and unravel the complex nature of the issue, supporting clinicians and decision makers to find multi-layered approaches for equitably high-quality survivorship care.