Survivorship Program Research Articles

Implications of sociodemographic and clinical factors on symptom burden: age-specific survivorship care in the primary central nervous system tumor population

Abstract Background This analysis aims to provide insight into differences in symptom burden and general health status between young adults (YA; 18-39 years old) and older adults (OA; ≥40 years old) with primary central nervous system tumors (PCNST). Methods Data were retrospectively analyzed from the National Cancer Institute Neuro-Oncology Branch’s Natural History Study (NCT02851706 PI: T.S. Armstrong) to determine differences in patient-reported outcomes (general health status [EQ-5D-3L], symptom burden [MDASI-BT and MDASI-SP], anxiety/depression [PROMIS], and perceived cognition [Neuro-QOL]) and demographic and clinical data using chi-square, one-way ANOVA, and Student’s t-tests. Linear regression with backward elimination determined which characteristics impacted perceived symptom burden and general health status. Results The sample included 271 YA (82% with a primary brain tumor (PBT); median age 31 [range, 18-39]) and 516 OA (88% with a PBT; median age 54 [range, 40-85]). YA were more likely to be single (P<0.001), employed (P<0.001), and make < $50,000 per year (P=0.014). More YA reported pain (P=0.008), nausea (P<0.001), drowsiness (P=0.043), and vomiting (P=0.001) than OA. Among demographic and clinical characteristics, when controlling for age, Karnofsky Performance Scale score (P<0.001) and employment status (P<0.001) were predictors of symptom interference, activity- and mood-related interference in patients with PBTs. Compared to OA with spinal tumors, YA reported more moderate-severe anxiety (P=0.050) and moderate-severe perceived cognitive deficits (P=0.023). Conclusions Significant differences in characteristics and symptom burden exist between YA and OA. Developmentally tailored survivorship programs providing additional psychosocial support and resources to address symptom presentation in YA are needed.

Oncology Survivorship Care Clinics: Design and Implementation of Survivorship Care Delivery Systems at NCCN Member Institutions.

It is estimated that there are >18 million cancer survivors in the United States, and there is a growing number of survivorship programs across the country to care for these individuals. There is a clear need for survivorship care; however, evidence is still emerging on how to best operationalize the guidance from nationally recognized organizations and clinical practice guidelines. The NCCN Best Practices Committee (BPC) recently conducted a survey to better understand survivorship clinics at NCCN Member Institutions. Representatives from 24 of the 33 NCCN Member Institutions (73%) submitted responses to the survey. Although all responding centers see cancer survivors, most (92%) have ≥1 dedicated survivorship clinics. Of those centers with dedicated survivorship clinics (n=22), 9 (41%) reported general survivorship clinics for all cancer types, and 13 (59%) indicated their center offered ≥1 disease-specific survivorship clinics. Most centers (55%) use a mix of physicians and advanced practice providers (APPs; nurse practitioners and/or physician assistants) to staff survivorship clinics; however, 9 (41%) are staffed entirely by APPs and 1 (4%) is staffed entirely by physicians. The vast majority (91%) have dedicated scheduling templates, and most (73%) have dedicated clinic space for survivorship clinics. The referral process for survivorship clinics varies across centers, with 16 (73%) using algorithms, guidelines, or pathways to determine when a patient is referred to a survivorship clinic. Findings may reflect the evolution of survivorship care and indicate a move toward standardizing which patients are seen and when. It is notable that >50% of institutions reported a model in which they follow survivors for their lifetime. Given the number of patients impacted by cancer, these data highlight the need to continue refining how survivorship care models are integrated into cancer centers to best serve patients with cancer and cancer survivors.

QOL-13. FROM SURVIVING TO THRIVING WITH A BRAIN TUMOR: THE UNIVERSITY OF CALIFORNIA, SAN FRANCISCO NEUROONCOLOGY MODEL FOR AN EMPOWERED AND ENGAGED PEER VOLUNTEER SUPPORT COMMUNITY

Abstract BACKGROUND Brain tumor patients often experience feelings of isolation, identity loss, and existential distress, and peer support can have a positive impact in these areas. Providing peer support, however, can be emotionally demanding and presents unique challenges for neuro-oncology patient volunteers, with little guidance available to address these issues. We describe an innovative program that supports volunteers and provides a roadmap for implementing peer volunteer programs in clinical neuro-oncology practices. METHODS In 2020, the UCSF Sheri Sobrato Brain Cancer Survivorship Program established an initiative to match brain tumor patients seeking support with trained patient volunteers. To address potential challenges, an optional, ongoing support community for volunteers was created by a health coach educator, with co-facilitation from a rehabilitation neuropsychologist and a social worker. The weekly meetings included supplemental training, personal check-ins, and group discussions. Volunteer feedback was collected through direct volunteer communication with the facilitator and an annual online survey. RESULTS From August 2020 through October 2023, 46 peer volunteers were trained in six cohorts. There were 116 patients requesting peer support. In total 132 volunteer-patient matches were made for an average of 2.87 matches per volunteer. Seventy percent of volunteers attended 11 or more meetings/year. Average attendance was 12 volunteers per meeting. All respondents to the annual online survey (n=31) reported a high level of satisfaction with the program. Volunteers highlighted benefits such as mutual support, impactful contributions, and personal growth and empowerment. Volunteers who reported higher levels of preparedness attended >11 meetings per year. DISCUSSION In our experience, patient peer volunteer programs show promise in reducing isolation and restoring purpose. This unique 3-year pilot suggests that ongoing group support and training is a plausible and effective way to enhance a peer volunteer program. Future efforts will focus on developing a structured curriculum for neuro-oncology patient peer volunteers.

Application of Bone Mineral Density Study Guidelines across California Pediatric Oncology Survivorship Programs

Application of Bone Mineral Density Study Guidelines across California Pediatric Oncology Survivorship Programs

Environmental Enrichment and Health Outcomes Among Low-Grade Glioma Brain Tumor Survivors.

BACKGROUND: Brain tumor survivors who received radiotherapy (RT) are at a disproportionately increased risk of accelerated aging and symptom burden. We aim to examine the association between environmental enrichment (EE) and health outcomes among low-grade glioma survivors who received brain RT. METHODS: The study used a cross-sectional cohort design, enrolling participants approximately 5 years from diagnosis. The construct of EE consisted of social network, physical activity, employment status, and financial stability. Berkman-Syme Social Network Index, International Physical Activity Questionnaire, Vocational Index Scale, and a Socioeconomic Questionnaire were used to measure the construct of EE. Health outcome measures included the Montreal Cognitive Assessment, Symbol Digit Modality Test, clinical brain magnetic resonance images (pre-RT, approximately 2-3 years after RT, and approximately 5 years after RT), Karnofsky Performance Status Scale, and the MD Anderson Symptom Inventory Brain Tumor Module. Ordinal logistic regression estimated the association between levels of EE and health outcomes. RESULTS: Thirty-nine participants completed the study and experienced varying levels of EE. The median age was 44 years old, ranging from 26 to 78 years old. Nineteen individuals were diagnosed with oligodendroglioma, and 18 were diagnosed with astrocytoma. Thirteen participants had low EE, 17 had moderate EE, and 9 had high EE. Although not statistically significant, we observed patterns of increasing health outcomes (Montreal Cognitive Assessment, Symbol Digit Modality Test, and Karnofsky Performance Status Scale) related to increasing levels of EE. CONCLUSION: This study is an initial exploration into the role of EE in health outcomes and survivorship programs for persons with glioma. Future research should assess EE before treatment or at the time of diagnosis and be longitudinal to accurately ascertain the association between EE and health outcomes. Comprehensive neuro-oncology survivorship programs structured to facilitate EE may reduce symptom burden, promote neuroplasticity, and improve cognitive and functional outcomes after brain radiation.

7742 Clinical Outcomes of Thyroid Cancer Patients Enrolled in a Comprehensive Thyroid Cancer Survivorship Program

Abstract Disclosure: M.A. Ruiz Santillan: None. J.L. Rollins: None. S. Lee-Kim: None. M.I. Hu: None. S.I. Sherman: None. J. Varghese: None. N.L. Busaidy: None. M. Cabanillas: None. R. Dadu: None. P.C. Iyer: None. A.K. Ying: None. S.G. Waguespack: None. J.K. Devin: None. C. Jimenez: None. R. Vassilopoulou-Sellin: None. R.F. Gagel: None. M. Zafereo: None. P.H. Graham: None. N.D. Perrier: None. E. Grubbs: None. S.B. Fisher: None. M.A. Habra: None. Background Thyroid cancer, being the most common endocrine malignancy with excellent prognosis, is an ideal model for cancer survivorship. The Thyroid Cancer Survivorship clinic (TCSC) was established to provide oncologic, functional, behavioral follow-up, and age-appropriate cancer screening. Entry criteria into TCSC were developed using expert opinion as formalized consensus guidelines for thyroid cancer survivorship care do not exist. Patients may transition at 1, 3, or 5 years after initial diagnosis depending on original histology and stage, lack of definitive biochemical (thyroglobulin or Calcitonin/CEA), and/or structural evidence of disease. It is run by nurse practitioners with physician supervision. The impact of the transition criteria from acute care to survivorship has not been evaluated. To fill this knowledge gap, we analyzed data from TCSC to assess important clinical outcomes including return to active care, disease recurrence, and overall survival. Methods A single-institution, retrospective review was conducted to identify patients with differentiated (DTC) and medullary (MTC) thyroid cancer enrolled in our TCSC. We particularly assessed patients who were referred from TCSC back to active care because of suspected recurrence, which was defined as either biochemical and/or structural and based on abnormal biochemical markers and/or imaging. Results Between 2009-2023, 2887 patients were transitioned from active care to the TCSC out of whom 246 (8%) patients returned to active care for: the evaluation of endocrine disorders in 84 pts (2.9%), scheduling factors 74 pts (2.6%), and suspected recurrence in 88 pts (3%) (83 with DTC and 5 with MTC). Recurrence was suspected based on abnormal biochemical markers in 40/88, imaging in 34/88, or both in 14/88. Of the patients with suspected recurrence there were 66 females and 22 males with a median age at the time of initial diagnosis of 44 (range: 18-76) years. The median follow-up time from diagnosis to the last visit to our institution was 14 (range: 5-55) years and the median follow-up from transition to the TCSC to the last visit was 8 (range: 1-14) years. At the time of entering TCSC, 21/88 (24%) had biochemical indeterminate disease, while 38 (43%) had indeterminate imaging findings on neck ultrasound. DTC patients returned to active care after a median of 5 (range: 0.26-13) years and MTC patients returned after a median of 2 years (range: 0.81-11). At the last follow-up visit, 42/88 (48%) patients were alive with no evidence of disease, 41/88 (47%) were alive with residual disease and 5/88 (5%) died (3 of thyroid cancer, 1 of breast and 1 of genitourinary malignancy complications). Conclusions The retention rate is high in TCSC, with a small percentage transitioning back to active care. Only 3% of patients transitioned back to active care for suspected recurrences, with half occurring more than 5 years after entering survivorship. Presentation: 6/3/2024

Surviving to thriving: Virtual nutrition education in patients with breast cancer

IntroductionImproved outcomes in the treatment of breast cancer has increased the importance of formal survivorship. National guidelines and accreditation standards require institutional survivorship programs; however, implementation presents operational challenges. While existing literature affirms the need for clinician involvement in survivorship, applicability to virtual formats is unknown. Here we report our 3-year experience with design and implementation of virtual nutrition workshops in breast cancer survivorship. Materials and methodsFree virtual workshops were developed by an interdisciplinary team and offered to eligible participants on a quarterly basis. Workshop content focused on diet, nutrition, and exercise in cancer prevention, development, and recurrence. A question-and-answer session addressed misconceptions about nutrition and cancer. Participants were invited to participate in an evaluation survey after each workshop. Post-workshop assessment of course effectiveness was performed with a four-point Likert scale and qualitative comments. Results116 women participated in the workshops. Quarterly attendance consistently grew and averaged sixteen participants per session. Post workshop surveys demonstrated significant improvements in participants’ knowledge, and likelihood of behavioral modification. 93 % of participants had the highest rating for likelihood of making a change to their diet, and 83 % for likelihood of making changes to physical activity. Qualitative feedback supported both the effectiveness of the education as well as the virtual group setting. ConclusionsVirtual group workshops are effective for survivorship education. They present a feasible way to improve access to oncologic-trained dieticians for low-acuity concerns. The realistic design affords itself to easy reproducibility in other institutions seeking to implement disease-specific survivorship programs.

Prostate cancer survivorship of Australian men living with prostate cancer: Patient support programs in Australia.

Treatment for prostate cancer (PC) is associated with adverse effects, especially in patients receiving androgen deprivation therapy (ADT). The Australian Government, non-governmental organisations and pharmaceutical companies responsible for marketing ADT have initiated and sponsored various strategic support programs for patients diagnosed with PC. This professional article provides an overview of available PC patient support programs in Australia to assist general practitioners (GPs) to direct patient referrals and optimise clinical care. These PC support programs provide useful assistance on educational materials, decision support, clinical care management and referral to specialised services (eg continence advice, sexual health counselling and psychological support). More concerted efforts and smarter investment in PC survivorship programs are necessary to engage, educate and improve the lives of men living with PC more effectively.

Accessibility of and Barriers to Long-Term Follow-Up Care for Childhood Cancer Survivors

Childhood cancer survivorship programs and long-term follow-up (LTFU) practices are inadequate in most regions of China. To understand the clinician and caregiver perceptions of LTFU care and to identify barriers to adherence to LTFU care in mainland China. This survey study had a 2-phase sequential mixed-methods approach, consisting of a cross-sectional survey followed by semistructured interviews. Participants included oncology clinicians recruited through an educational seminar on LTFU and caregivers recruited through convenience sampling. Data were collected from November 2022 to September 2023. The clinician survey and interview focused on the standards and resources for LTFU care at their practicing institution and barriers to the coordination of LTFU care. For caregivers, the survey and interview focused on their awareness of and participation in LTFU care and their opinions on future LTFU care visits. A total of 101 clinicians (28 [27.7%] male; 73 [72.3%] female; 46 [45.6%] aged >40 to 50 years) completed the survey (response rate: 90.2%) representing 32 institutions from 22 provinces. As for the caregivers' survey, 164 eligible participants (36 [22.0%] male; 128 [78.0%] female) were recruited (response rate: 20.2%). The majority of the caregivers had received a high school or greater education (96 [56.7%]) and were parents of CCSs diagnosed with leukemia (67 [40.9%]), lymphoma or solid tumors (47 [28.7%]), or conditions requiring hematopoietic stem cell transplantation (50 [30.5%]). Most clinicians (74 [73.3%]) reported providing late effects care, yet only 10 (13.5%) had a dedicated follow-up clinic for CCSs. Two-thirds (64 [63.4%]) reported that the LTFU plan for each survivor is solely determined by their clinical judgment. In structured interviews, all doctors admitted to deviating from published guidelines due to challenges in implementing screening recommendations in their settings. Barriers to providing LTFU services included patient-related factors (76 [75.2%]), survivor knowledge deficits (61 [60.4%]), and the absence of dedicated LTFU clinics (61 [60.4%]). Among caregivers responding to the survey, 60 (36.6%) had never heard of late effects. Overall, 22 of 26 caregivers (84.6%) who participated in the interviews were not aware of potential late effects, although 17 (68.0%) could articulate existing conditions and symptoms that their children were experiencing. In this mixed-methods study involving clinicians and caregivers, substantial disparities in the uniformity and accessibility of LTFU in China were observed, suggesting the imperative need for a standardized approach to LTFU care for survivors. This includes advocating for establishment of dedicated clinics, alongside an emphasis on enhanced education and training for both clinicians and caregivers.

“Tell me I’m okay”: A cross-sectional quality-of-life assessment of patients in a breast cancer survivorship program.

213 Background: The number of breast cancer survivors is increasing due to improvements in care and an aging population, leading to an increased need for care that addresses the physical and psychological needs of patients after completion of active treatment. The Sunnybrook Breast Cancer Survivorship Program was established to provide comprehensive evidence-based survivorship care and facilitate the transition to family doctors. Despite rising interest in dedicated survivorship care, there is little consensus regarding which individuals are likely to suffer the most long-term impacts of breast cancer treatment. Factors as varied as age, ethnicity, socioeconomic status, and treatment type can influence Quality-of-Life (QoL) outcomes. This cross-sectional assessment uses mixed methods to evaluate QoL trends in the patient cohort. Methods: Current patients of the Sunnybrook Breast Cancer Survivorship Program were asked to complete a baseline information form, as well as the EORTC QLQ-30 and BR-45, two validated measures of QoL for breast cancer patients and survivors. QoL, functional, and symptom domains were calculated from these responses accordingly and analyzed statistically. Patients reported their most bothersome QoL concerns through an open-ended questionnaire, which was analyzed and organized thematically. 99 patients have been recruited to date, of a planned 200. Results: We find that sexual health is of importance for this population, with 50 (50.5%) participants reporting sexual activity. Patients under 50 have poorer sexual functioning scores (p<0.01) as well as more issues with body image (p<0.05) than older survivors. Both married and under-50 patients are significantly more likely to have poorer outlooks on the future (p<0.05; p<0.01). Younger patients also tended to have worse role functioning, cognitive functioning, emotional functioning, and social functioning scores, though these differences were not statistically significant. Thematic analysis of qualitative data showed that patients’ chief concerns were the impact that ongoing side effects had on their daily functioning, impact of treatment on body image, disruptions to work and personal relationships, and strong anxiety about potential recurrence. Conclusions: While it is understood that younger BC survivors face unique challenges, our findings indicate that these obstacles persist into older age groups. In addition to physical side effects, such concerns as body image issues, social strain, and emotional functioning can drive QoL scores for these patients. Notably, many patients endorsed strong anxiety regarding potential recurrence that affected QoL, and identified dedicated survivorship follow-up as an ameliorating factor. Further research should be conducted into the unique needs of under-50 survivors, as well as the role of recurrence anxiety in impacting QoL.

EHealth Platforms Facilitate Prostate Cancer Shared Care: A Systematic Review.

Prostate cancer survivorship care is essential for the early identification of cancer recurrence and progression and the monitoring of adverse effects. Prostate cancer survivorship programs have enabled care to be shared between specialists using digital healthcare platforms. We systematically reviewed the literature to examine if prostate cancer survivorship care had been successfully digitalised. English language articles were searched on PubMed, Embase, and Cochrane Libraries. The search terms included combinations of "eHealth", "digital health", "prostate cancer", "shared care", and related keywords (studies published between [1 January 1946 and 20 March 2023]). Our search strategy yielded 1722 publications, of which 17 studies were included in our final review. Diverse eHealth interventions (web platforms, apps, patient portals) for digital prostate cancer shared care enabled communication, symptom management, and holistic assessment, with potential for reducing anxiety, enhancing outcomes, and increasing engagement. The studies (9 months to 5 years duration) involved participants across different care phases (16 to 3521 participants). We identified ten eHealth platforms, which provided successful symptom tracking, needs assessment, and communications. The platform-based interventions improved some aspects of communication, symptom management, and care delivery. The ongoing clinical need for a robust digital platform that caters to all domains of shared care was identified. eHealth will certainly play a central role in digital prostate cancer shared care, providing better health outcomes and care delivery. Future larger studies in this field should address the implementation barriers, including cost-effectiveness and primary care remuneration. It is also crucial to refine application useability and workflow, focusing on standardization and patient-centred approaches.

Cancer Care in Resource-Limited Countries: Jordan as an Example.

Jordan, a lower- to middle-income country, is relatively small, but with rapidly growing population and a challenged economy. Cancer is a growing health care problem and currently ranked second, after cardiovascular diseases, as a cause of death. Jordan's national cancer registry continues to suffer from problems mostly related to long lag time in reporting, absence of outcome data, and accurate staging. The number of new patients with cancer diagnosed in Jordan is increasing at an expected, none disturbing rate, fueled by population growth, improving life expectancy, changing population structure that hosts more older population, high rate of obesity, smoking, and lack of adequate exercise. However, age-standardized rate for cancer incidence is significantly lower than Western societies, yet, mortality rate is higher. Despite efforts, cancer is still diagnosed at more advanced stages and at younger age. The Jordan breast cancer program represents a great example of opportunistic screening that led to significant downstaging of breast cancer. Efforts to evaluate the feasibility of screening programs for colorectal and lung cancers are underway. Tremendous efforts resulted in the execution of the largest clinical cancer genetics program in the region that helps identify patients and at-risk relatives for hereditary cancers. Low-resourced countries, including Jordan, will not be able to keep up with the rapidly increasing cost of cancer care. A better access to clinical trials and moving cancer care to ambulatory settings should offset some of this cost. A cancer control program that addresses all issues of cancer care from screening and early detection, through active cost-effective treatment that assures wider access to palliative care, hospice, and survivorship programs under an expanded universal health coverage, is an urgent national health priority.

Changes in health-related quality of life, depression, and fear of progression during oncological inpatient rehabilitation and beyond: a longitudinal study

PurposeStudies evaluating oncological inpatient rehabilitation rarely include follow-up intervals beyond 6 months and larger proportions of patients other than those with breast cancer. Therefore, this study investigated changes in health-related quality of life (HRQoL), depression, and fear of progression of patients with breast, colorectal, or prostate cancer from the beginning to the end of oncological rehabilitation and a 9-month follow-up.MethodsThree hundred seventy-seven patients with breast, colorectal, or prostate cancer undergoing oncological inpatient rehabilitation (median age 61 years, 49% female) completed the EORTC QLQ-C30, the PHQ-9, and the FoP-Q-SF at each measurement point. Data analysis used 3 (tumor site) × 3 (time of measurement) repeated measures ANCOVAs with patient age and time since diagnosis as covariates. At each time point, we also compared our sample to the general population on the measures used.ResultsHaving controlled for the covariates, we found significant effects of tumor site, which were small except for Diarrhea. Effects of time of measurement were often significant and in part at least medium in size indicating improvement of HRQoL and depression during rehabilitation. At follow-up, some HRQoL domains and depression deteriorated. Women with breast cancer, in particular, showed a greater decrease in emotional functioning then. Compared to the general population, the sample’s HRQoL and depression were significantly worse on most occasions.ConclusionOncological inpatient rehabilitation may improve HRQoL. The subsequent and in part differential deterioration in some HRQoL domains suggests a need for further follow-up care within survivorship programs.

Sleep disorder syndromes of post-acute sequelae of SARS-CoV-2 (PASC) / Long Covid

IntroductionCOVID-19 infection has resulted in a high prevalence of a post-infectious syndrome, known as post-acute sequelae of SARS-CoV-2 (PASC) or “Long COVID”. PASC is a heterogeneous disease with a high prevalence of sleep disturbances, varying from an insomnia disorder to excessive daytime sleepiness. MethodsPatients seen in the Covid Survivorship Program at the Beth Israel Deaconess Medical Center Boston, USA, were screened for sleep disorders as part of a comprehensive multi-system evaluation. Those who screened positive were referred for a comprehensive sleep evaluation in a dedicated COVID-19-Sleep clinic, followed by diagnostic sleep testing and treatment. This report summarizes patients who completed an American Academy of Sleep Medicine (AASM) accredited facility-based diagnostic evaluation. International Classification of Sleep Disorders 3rd Edition-Revised criteria were met for all diagnoses. ResultsIn 42 patients with PASC, five categories of sleep disorder syndromes were observed following a sleep clinic evaluation, including obstructive sleep apnea, chronic insomnia disorder, primary hypersomnia, REM behavior disorder (RBD), and new onset circadian phase delay. Seven patients met criteria for idiopathic hypersomnia, and two had narcolepsy type 2. RBD patients were infected in three different waves; circadian disturbance patients were all infected in the winter wave of 2020/21, and the primary hypersomnolence group occurred during all waves, predominantly the initial wave of 2020. A peculiar form of insomnia was a persistent loss of sleep regularity. ConclusionsSpecific sleep symptoms/syndromes are reported in this select group of patients with PASC/Long Covid. As new onset sleep complaints are prevalent in PASC, we recommend a complete clinical and investigative sleep evaluation for persistent severe sleep symptoms following COVID-19 infection.

Survivorship program including long-term toxicities and quality-of-life development over 10 years in a randomized trial in operable stage III non-small-cell lung cancer (ESPATUE).

Over 40% stage-III non-small-cell lung cancer (NSCLC) patients (pts) experience 5-year survival following multimodality treatment. Nevertheless, little is known about relevant late toxicities and quality-of-life (QoL) in the further long-term follow-up. Therefore, we invited pts from our randomized phase-III trial (Eberhardt et al., Journal of Clinical Oncology 2015) after 10 years from diagnosis to participate within a structured survivorship program (SSP) including follow-up imaging, laboratory parameters, cardio-pulmonary investigations, long-term toxicity evaluations and QoL questionnaires. Of 246 pts initially accrued, 161 were considered potentially resectable following the induction therapy and were randomized (80 to arm A: definitive chemoradiation; 81 to arm B: definitive surgery; 85 not randomized for different reasons; group C). 31 from 37 pts still alive after 10 years agreed to the SSP (13 in A; 12 in B; 6 in C). Clinically relevant long-term toxicities (grade 3 and 4) were rarely observed with no signal favoring any of the randomization arms. Furthermore, available data from the global QoL analysis did not show a signal favoring any definitive locoregional approach (Mean QoL in SSP A pts: 56.41/100, B pts: 64.39/100) and no late decline in comparison to baseline and early 1-year follow-up. This is the first comprehensive SSP of very late survival follow-up reported in stage-III NSCLC treated within a randomized multimodality trial and it may serve as important baseline information for physicians and pts deciding for a locoregional treatment option.

Cancer Survivorship Care in the United States at Facilities Accredited by the Commission on Cancer

Since 2021, American College of Surgeons Commission on Cancer (CoC) accreditation standards require providing a survivorship program for patients with adult-onset cancer treated with curative intent. Since more than 70% of all patients with cancer in the US are treated at CoC-accredited facilities, this presents an opportunity for a landscape analysis of survivorship care availability. To determine the prevalence, types, and outcomes of cancer survivorship services at CoC-accredited facilities. This survey study used an anonymous, online, cross-sectional survey conducted from May 4 to 25, 2023. Participants were CoC-accredited facilities in the US representing diverse CoC program categories, institutional characteristics, geographic regions, and practice types. Department of Veterans Affairs cancer programs were excluded due to data usage restrictions. Data were analyzed from July to October 2023. CoC Survivorship Standard 4.8 was released in October 2019 and programs were expected to adhere to the Standard beginning January 1, 2021. Questions included self-reported survivorship program characteristics, availability of services aligned to CoC Survivorship Standard 4.8, and perceived program impacts. Response frequencies and proportions were determined in aggregate and by CoC program category. There were 1400 eligible programs, and 384 programs participated (27.4% response rate). All regions and eligible program categories were represented, and most had analytic caseloads of 500 to 4999 patients in 2021. Most survivorship program personnel included nurses (334 programs [87.0%]) and social workers (278 programs [72.4%]), while physical (180 programs [46.9%]) and occupational (87 programs [22.7%]) therapists were less common. Services most endorsed as available for all survivors were screening for new cancers (330 programs [87.5%]), nutritional counseling (325 programs [85.3%]), and referrals to specialists (320 programs [84.7%]), while treatment summaries (242 programs [64.7%]), and survivorship care plans (173 programs [43.0%]), sexual health (217 programs [57.3%]), and fertility (214 programs [56.9%]) were less common. Survivorship services were usually delivered by cancer treatment teams (243 programs [63.3%]) rather than specialized survivorship clinics (120 programs [31.3%]). For resources needed, additional advanced practice clinicians with dedicated survivorship effort (205 programs [53.4%]) and electronic health record enhancements (185 programs [48.2%]) were most endorsed. Lack of referrals and low patient awareness were endorsed as the primary barriers. A total of 335 programs (87.2%) agreed that Survivorship Standard 4.8 helped advance their programs. These findings of this survey study of CoC-accredited programs establish a benchmark for survivorship care delivery in the US, identify gaps in specific services and opportunities for intervention, contribute to longitudinal reevaluation for tracking progress nationally, and suggest the value of survivorship care standards.

A qualitative study of stakeholders' experiences with and acceptability of a technology-supported health coaching intervention (SHARE-S) delivered in coordination with cancer survivorship care.

Healthy cancer survivorship involves patients' active engagement with preventative health behaviors and follow-up care. While clinicians and patients have typically held dual responsibility for activating these behaviors, transitioning some clinician effort to technology and health coaches may enhance guideline implementation. This paper reports on the acceptability of the Shared Healthcare Actions & Reflections Electronic systems in survivorship (SHARE-S) program, an entirely virtual multicomponent intervention incorporating e-referrals, remotely-delivered health coaching, and automated text messages to enhance patient self-management and promote healthy survivorship. SHARE-S was evaluated in single group hybrid implementation-effectiveness pilot study. Patients were e-referred from the clinical team to health coaches for three health self-management coaching calls and received text messages to enhance coaching. Semi-structured qualitative interviews were conducted with 21 patient participants, 2 referring clinicians, and 2 health coaches to determine intervention acceptability (attitudes, appropriateness, suitability, convenience, and perceived effectiveness) and to identify important elements of the program and potential mechanisms of action to guide future implementation. SHARE-S was described as impactful and convenient. The nondirective, patient-centered health coaching and mindfulness exercises were deemed most acceptable; text messages were less acceptable. Stakeholders suggested increased flexibility in format, frequency, timing, and length of participation, and additional tailored educational materials. Patients reported tangible health behavior changes, improved mood, and increased accountability and self-efficacy. SHARE-S is overall an acceptable and potentially effective intervention that may enhance survivors' self-management and well-being. Alterations to tailored content, timing, and dose should be tested to determine impact on acceptability and outcomes.

Survivorship care plans and fear of recurrence in patients with breast cancer (BC).

e13790 Background: A survivorship care plan (SCP) is recommended for all patients after curative treatment for cancer. It typically includes guidance on the type and interval of follow-up care as well as education on treatment received and potential long-term side effects. Fear of recurrence is a common unmet need reported by cancer survivors and is associated with higher depression and lower social functioning. It is unknown if SCPs are associated with reduced fear of recurrence. Methods: Between 7/2023-8/2023, active patients and survivors were recruited from Breastcancer.org and consented to participate in an anonymous online survey in English or Spanish. Eligibility included: US resident, age ≥18, and diagnosed with BC within the past 10 years. Survey assessed engagement in and satisfaction with survivorship care, receipt of a written SCP, and fear of recurrence (via the validated 9 question FCRI-SF, scored 0-36, higher scores indicate greater fear of recurrence) in patients with non-metastatic BC. Multivariate analysis (MVA) assessed relationship of SCP and FCRI-SF score ≥22 (indicating a clinically significant level of fear) after controlling for gender, age, race, ethnicity, and education. Results: Of 997 who completed the survey, 340 (34.1%) had completed all curative treatment and thus queried on receipt of SCP and fear of recurrence. Of this cohort, 97.4% identified as women, 78.8% White, 6.2% Black, and 3.3% Hispanic. Median age was 63 (interquartile range IQR 54-70) and median time since diagnosis 2.5 years (IQR 1.4-5.2). 76.2% had a college degree. Most were satisfied with their survivorship care (median score 4: scale: 1-very unsatisfied to 5-very satisfied). Less than a quarter (21.8%) had access to a cancer survivorship program at their facility; 60.0% did not; and 18.2% did not know. Of the 74 respondents who had access to a program, 56.8% used its services. 32.1% participants reported receiving a written SCP, 18.5% did not remember; almost half (49.4%) reported they did not receive one. Of those that received a SCP, most reported it was explained well to them (median score 4; scale: 1-poor to 5-excellent), and that they had “excellent” comprehension of the plan (median score 5). Median fear of recurrence score was 20 (IQR 14-25); 43.2% had a score ≥22, indicating a clinically significant level of fear. On MVA, patients who were older (OR 0.98, 95%CI 0.96-1.00, p=0.019) and who had received a SCP (OR 0.54, 95%CI 0.33-.88, p=0.013) were less likely to have clinically significant fear. Conclusions: Although overall satisfaction with survivorship care was high, less than one-third of surveyed BC survivors reported receiving a written SCP. Receipt of a SCP was associated with clinically significantly lower fear of recurrence. Future research should focus on provider barriers to SCP implementation, patient barriers to survivorship program use, and explore the role of SCP in mitigating psychosocial distress in diverse samples.

Late mortality and chronic health conditions in long-term survivors of nasopharyngeal cancers: The 20-year follow-up of territory-wide Hong Kong Nasopharyngeal Cancer Survivor Study (HKNPCSS).

12045 Background: The survival rate of patients with nasopharyngeal cancer (NPC) has significantly improved in the last decade. However, there are only a few studies that have quantified the long-term morbidity and mortality that follow NPC treatment. This study aims to analyze the chronic health conditions, all-cause mortality, and cause-specific mortality among NPC survivors. Methods: The Hong Kong NPC Survivor Study (HKNPCSS) is a retrospective cohort study conducted across all six oncology centers in Hong Kong. It included longitudinal follow-up of 5-year survivors diagnosed with NPC between 1997 to 2015. We compared the standardized mortality ratio (SMRs) of 7893 survivors to a matched population in terms of age, sex, and calendar year. We also calculated the frequencies of chronic conditions of 7893 survivors and 23679 healthy individuals with matched age, sex, and date of cohort entry. Chronic health conditions were classified using the Common Terminology Criteria for Adverse Events. Cox proportional hazard models were used to estimate hazard ratios (HRs) for chronic health conditions. Results: The mean age of NPC survivors was 49.1 years, while healthy individuals had a mean age of 50.5 years. Among the 7893 NPC survivors, the 20-year cumulative all-cause mortality was 34.0% (95% CI, 29.1%-38.9%), with 1668 (59.9%) of 2785 deaths attributed to health-related causes. The SMR for NPC survivors compared to the general population was 3.81 (95% CI, 3.67-3.95), with the highest SMRs observed for pulmonary (SMR: 6.18, 95% CI, 5.73-6.64) and cardiovascular (SMR: 2.12, 95% CI, 1.90-2.36) causes. Among the survivors, 59.2% (n=4674) had severe, life-threatening, or fatal (grade 3-5) health conditions, with a 20-year cumulative incidence of 59.0% (95% CI, 56.4%-61.5%). The adjusted hazard ratio (HR) of grade 3-5 chronic condition in NPC survivors, compared to healthy cohorts, was 7.02 (95% CI, 6.64-7.42). Gastrointestinal (HR: 20.7), hearing, visual, and nasal (HR: 15.4), and neurological (HR: 8.39) conditions had the highest risks. Intensity modulated radiotherapy (IMRT), compared to non-IMRT, was associated with reduced risks of all-cause mortality (HR: 0.83, 95% CI, 0.74-0.91) and a trend towards reduced grade 3-5 chronic health conditions (HR: 0.89, 95% CI, 0.75-1.05). Conclusions: Even 20 years after diagnosis, NPC survivors still face increased risks of late mortality and morbidity. The findings emphasize the need for a comprehensive survivorship program to improve outcomes for NPC survivors.

KANSURVIVE: Testing a telementoring model for improving cancer survivorship care in rural practice.

e13791 Background: Cancer survivors require long-term, coordinated care to address the physical, emotional, and psychosocial effects of cancer and its treatment. KanSurvive, a single arm feasibility trial, evaluated the effectiveness of the KanSurvive ECHO intervention combined with practice facilitation (PF) to promote better adoption of evidence-based practice (EBP) survivorship care guidelines for breast, colorectal, lung, and prostate cancer among rural survivors. Methods: Fifteen primary care clinics in Kansas (80% in RUCA codes 4-10), including 62 healthcare professionals, were invited to participate in four, 1-hour Project ECHO telementoring program held in 2021. Real-time videoconferencing sessions covered EBP survivorship guidelines for breast, colorectal, lung, and prostate cancer. Clinics used brief plan-do-study-act cycles with PF supporting implementation of the quality improvement process. Utilizing the National Quality Forum framework, a performance indicator booklet with established measures in preventive health and cancer survivorship was developed as a data collection and quality improvement resource. Performance indicators included EBP screening actions related to cancer surveillance, lifestyle factors, distress, evidence of a review of family history of cancer, and the patient’s cancer diagnosis documented in the EHR. Results: Three clinics (7 = healthcare professionals) withdrew from the project citing competing demands and a provider leaving the practice. The COVID-19 pandemic delayed project initiation and prevented clinic visits. Recruitment and study procedures were implemented remotely. Clinic staff identified 138 cancer survivors (M = 13, IQR [6-16] per practice) seen in the year pre-intervention, and 129 survivors in the year prior to post-intervention. Pre-intervention, overall tumor surveillance was 91%, but lung cancer surveillance was lower than other tumor types at 70%. Other than surveillance, measures of baseline performance were similar across tumor types: screening for distress 84%, assessment of BMI 97%, screening for tobacco use 83% and documentation of family history 70%. Post-intervention performance indicators were similar except for documentation of family history which increased to 89% (p < 0.01). Conclusions: Standardized survivorship metrics can facilitate quality assessment as part of an ECHO-based cancer survivorship program. Although there are modest opportunities for improvement, PCPs in this study caring for rural patients perform reasonably well across a variety of cancer survivorship performance metrics comparable to national primary care quality measures. Documented assessment of family history of cancer lags other metrics and improved after participation in the KanSurvive telementoring program.