Surveillance For Late Effects Research Articles

Communicating cardiovascular health information and improving coordination with primary care: A Childhood Cancer Survivor Study randomized trial.

10011 Background: Childhood cancer survivors are at risk of early cardiovascular disease (CVD). We conducted a survivorship care plan (SCP)-based counseling intervention to improve CVD risk factor control in adult-aged survivors. Methods: Randomized (1:1) trial of survivors at high CVD risk based on history of anthracycline or chest radiotherapy exposures with undertreated hypertension (≥130/80 mmHg), dyslipidemia (LDL ≥160 mg/dL or triglyceride ≥200 mg/dL), and/or glucose intolerance (threshold varied if history of pre-diabetes or diabetes) based on in-home testing. Approximating a survivorship clinic visit, the intervention consisted of a remotely delivered session with an advanced practice provider to review results, a SCP with personalized CVD risk information, and an action plan to help manage CVD risk factors. A remote booster session was provided 4 months later with the action plan updated. Control participants only received a copy of their in-home results with abnormalities noted and written encouragement to follow-up with their primary care provider (PCP). Blood pressure, lipid profile, and glucose tolerance were retested after 1y. For both groups, all participant materials were sent to PCPs throughout the study, and PCP medical records were abstracted at study completion. Logistic regression assessed the odds ratio (OR) for undertreatment at 1y associated with the intervention, adjusting for pre-specified variables (sex, current age, time since cancer, insurance status, recent history of survivorship clinic visit, and undertreated CVD risk factor). Results: Among 644 survivors who completed in-home testing, 347 met inclusion criteria and were randomized (175 intervention; overall 52% male, mean age 40y, 31y since cancer diagnosis); 264 with 1y follow-up (126 intervention). At baseline, rates of hypertension, dyslipidemia, and glucose intolerance were 53%, 52%, and 49%, respectively; 43% had > 1 undertreated condition. Although the intervention achieved > 95% satisfaction, it was not associated with reduced undertreatment vs control (OR 0.9, 95% CI 0.7-1.3). Notably, 48% of intervention and 44% of control participants had less undertreatment after 1y. In secondary analysis, greater internal locus of control was associated with less undertreatment at 1y (OR 0.7, 95% CI 0.6-0.9). The intervention group was more likely than controls to have CVD risk (+10 vs -1%), SCP (+17 vs -2%), and some late effects surveillance plan (+8 vs +2%) documented within PCP records at 1y vs baseline (p < 0.05 for all). Conclusions: While a remotely delivered counseling intervention did not reduce CVD risk factor undertreatment compared with provision of test results alone, both study arms had > 40% reduction in undertreatment. These results suggest that simply providing a formal CVD risk assessment to high-risk cancer survivors and their PCPs may be effective. Clinical trial information: NCT03104543 .

From long-term follow-up Recommendations for clinical practice to plain language summaries for childhood, adolescent, and young adult cancer survivors

BackgroundHaving sufficient knowledge of cancer diagnosis, treatment and late effects in survivors of childhood, adolescent, and young adult (CAYA) cancer is important for effective self-management and optimising health outcomes. Therefore, in collaboration with different stakeholders, the PanCare PLAIN Information Group converted the PanCareFollowUp Recommendations for late effects surveillance into information summaries that are Person-centred, written in Lay language, Accessible, Internationally relevant, and Navigable (PLAIN). MethodsThe PanCare PLAIN Information Group, comprising 21 stakeholders from seven European countries, collaborated to provide concise information for survivors and their families. The aim was to deliver PLAIN summaries that are clear and accessible for the majority of survivors, while providing links to additional sources of information. The PLAIN summaries were drafted by the PanCare PLAIN Information Group and subjected to two internal and one external consultation round, the latter involving experts, CAYA cancer survivors and parents/caregivers. ResultsIn total, 45 PLAIN summaries were developed, each corresponding to one of the PanCareFollowUp Recommendations for late effects surveillance. The summaries provide information about late effects, personal health risks, important symptoms and signs, recommended surveillance strategies, possible referral and treatment options, and self-care. ConclusionsThe PLAIN summaries are meant to increase knowledge in survivors and their families, while they may also inform healthcare professionals. Along with their translations, the PLAIN summaries will be made freely available on the PanCare website, with a link provided on the European Network of Youth Cancer Survivors information platform. In addition, they will become and integral part of the Survivorship Passport.

Abstract PO1-11-08: Late effects of breast cancer treatment among long term breast cancer survivors in the Carolina Breast Cancer Study

Abstract Background: Improved precision in breast cancer treatment has contributed to better overall survival. Intensive breast cancer treatments may have long-term impacts on survivor quality of life. Survivors may experience late effects including lymphedema, peripheral neuropathy, and cardiotoxicity from surgery, radiation, or chemotherapy. Estimates of the long-term burden of chronic breast cancer related conditions are important for managing the care of survivors. Methods: The Carolina Breast Cancer Study 3 is a population-based study of female breast cancer survivors diagnosed from 2008 to 2013 in North Carolina. Black and younger (< 50 years at diagnosis) women were oversampled. We calculated the cumulative prevalence of self-reporting of ever being diagnosed with lymphedema, peripheral neuropathy, or cardiac/heart problems as a result of breast cancer treatment over a 10-year follow-up period. Prevalence differences (PD) and 95% confidence intervals (CI), adjusted for age and race, were calculated to describe the differences in late effects in relation to patient characteristics (including latent class SES and access to care barriers). Additionally, we assessed racial disparities in the prevalence of late effects. Results: We included 1133 women who completed follow-up assessments at a mean of 11.2 years (SD=0.5) post diagnosis. The sample was predominately diagnosed with early stage (89.2%) and ER+ disease (75.2%). Treatments included lymph node removal ( >5 lymph nodes 57.9%), anthracycline chemotherapy (34.1%), taxane chemotherapy (60.3%), breast conserving surgery (58.7%), and mastectomy (41.0%). The prevalence of self-reporting lymphedema was 39.9% and was more common among younger (< 50 vs ≥50 PD: 10.2%, CI 4.7-15.7) and Black women (vs. White PD: 19.1%, CI 13.5-24.7), and those with fewer access to care barriers (vs more PD: -19.5%, CI -31.1- -8). The prevalence of peripheral neuropathy was 64.9% and was more common among younger (< 50 vs ≥50 PD: 5.6%, CI 0.2-11.0) and Black women (vs. White PD: 16.5%, CI 11.1-21.9), and those of lower SES (high vs low PD: -11.7%, CI -17.6- -5.7). Rural survivors were less likely to report peripheral neuropathy (PD: -9.7%, CI: -17.5- -2.0). Cardiac problems were reported in 16.7% of the sample and were more common among those of high SES (vs. low PD: -7.7%, CI -12.5, -3.0). All three late effects were associated with higher stage disease, ER+ disease, number of lymph nodes removed, anthracycline chemotherapy, and taxane chemotherapy. Both lymphedema and peripheral neuropathy were associated with mastectomy. Lymphedema was associated with trastuzumab use. Peripheral neuropathy was associated with recurrence. In stratified analyses by ER status, Black women were 13.7-28.8% more likely to have lymphedema in both ER+ and ER- disease (ER+ PD Black vs. White: 13.7%, CI 7.9-20.3; ER- PD Black vs. White: 28.8%, CI 18.3-39.3). Similar patterns were seen in analyses stratified by number of lymph nodes removed and by taxane chemotherapy. Other associations were not suggestive of racial disparities; with one exception. Black women were more likely to have cardiac problems at both high and low levels of SES (High Black vs White PD: 2.8%, CI -3.0, 8.6; low Black vs White PD: -7.0%, CI -15.2, 1.2). Conclusions: This study identified patient characteristics associated with an increased burden of late effects. Black and younger women experience a higher burden of lymphedema and peripheral neuropathy. Disease stage, ER status, lymph nodes removed, and chemotherapy received were associated with a higher prevalence of all three late effects and this is consistent with the observation that the burden of late effects increases with factors associated with more advanced stage of disease. Improved surveillance and prevention measures for breast cancer late effects can help improve survivorship care. Citation Format: Rina Yarosh, Hazel Nichols, Rachel Hirschey, Erin Kent, Lisa Carey, Melissa Troester, Eboneé Butler. Late effects of breast cancer treatment among long term breast cancer survivors in the Carolina Breast Cancer Study [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 PO1-11-08.

Longitudinal adherence to surveillance for late effects of cancer treatment: a population-based study of adult survivors of childhood cancer.

Adult survivors of childhood cancer are at elevated risk of morbidity and mortality compared to the general population, but their adherence to lifelong periodic surveillance is suboptimal. We aimed to examine adherence to surveillance guidelines for high-yield tests and identify risk factors for nonadherence in adult survivors of childhood cancer. In this retrospective, population-based cohort study, we used health care administrative data from Ontario, Canada, to identify adult survivors of childhood cancer diagnosed between 1986 and 2014 who were at elevated risk of therapy-related colorectal cancer, breast cancer, or cardiomyopathy. Using a Poisson regression framework, we assessed longitudinal adherence and predictors of adherence to the Children's Oncology Group surveillance guideline. Among 3241 survivors, 327 (10%), 234 (7%), and 3205 (99%) were at elevated risk for colorectal cancer, breast cancer, and cardiomyopathy, respectively. Within these cohorts, only 13%, 6%, and 53% were adherent to recommended surveillance as of February 2020. During a median follow-up of 7.8 years, the proportion of time spent adherent was 14% among survivors at elevated risk for colorectal cancer, 10% for breast cancer, and 43% for cardiomyopathy. Significant predictors of adherence varied across the risk groups, but higher comorbidity was associated with adherence to recommended surveillance. Survivors of childhood cancer in Ontario are rarely up to date for recommended surveillance tests. Tailored interventions beyond specialized clinics are needed to improve surveillance adherence.

Protocol for the ONLOOP trial: pragmatic randomized trial evaluating a province-wide system of personalized reminders for evidence-based surveillance tests in adult survivors of childhood cancer in Ontario

BackgroundChildhood cancer treatment while often curative, leads to elevated risks of morbidity and mortality. Survivors require lifelong periodic surveillance for late effects of treatment, yet adherence to guideline-recommended tests is suboptimal. We created ONLOOP to provide adult survivors of childhood cancer with detailed health information, including summaries of their childhood cancer treatment and recommended surveillance tests for early detection of cardiomyopathy, breast cancer, and/or colorectal cancer, with personalized reminders over time.MethodsThis is an individually randomized, registry-based pragmatic trial with an embedded process and economic evaluation to understand ONLOOP’s impact and whether it can be readily implemented at scale. All adult survivors of childhood cancer in Ontario overdue for guideline-recommended tests will be randomly assigned to one of two arms: (1) intervention or (2) delayed intervention. A letter of information and invitation will detail the ONLOOP program. Those who sign up will receive a personalized toolkit and a screening reminder 6 months later. With the participants’ consent, ONLOOP will also send their primary care clinician a letter detailing the recommended tests and a reminder 6 months later.The primary outcome will be the proportion of survivors who complete one or more of the guideline-recommended cardiac, breast, or colon surveillance tests during the 12 months after randomization. Data will be obtained from administrative databases. The intent-to-treat principle will be followed. Based on our analyses of administrative data, we anticipate allocating at least 862 individuals to each trial arm, providing 90% power to detect an absolute increase of 6% in targeted surveillance tests completed. We will interview childhood cancer survivors and family physicians in an embedded process evaluation to examine why and how ONLOOP achieved success or failed. A cost-effectiveness evaluation will be performed.DiscussionThe results of this study will determine if ONLOOP is effective at helping adult survivors of childhood cancer complete their recommended surveillance tests. This study will also inform ongoing provincial programs for this high-risk population.Trial registrationClinicalTrials.gov NCT05832138.

Post-Covid Symptoms and Quality of Life among Covid-19 Survivors

The study aimed to identify the post-COVID symptoms and quality of life of COVID-19 survivors. A descriptive survey design was adopted. A cohort of 200 participants who sought treatment from Govt Medical College Hospital, Kozhikode, was selected by purposive sampling technique based on sampling criteria. Tools included socio-personal and clinical variables, post-COVID symptoms checklist, and a standardised tool euro Qol 5D -5L tool. The relationship between QoL of COVID-19 survivors with post-COVID symptoms was tested with an independent t-test and the relationship between QoL of COVID-19 survivors with selected variables tested with ANOVA and independent t-test. The mean index score of QoL was 0.839. Among the study participants, 69.5 percent had fatigue, 61.5 percent had palpitation, and 49.5 percent had numbness as major post-COVID symptoms. A significant association was found between quality of life and post-COVID symptoms (shortness of breath, cough, palpitation, chest pain, discoloration of finger and toe, swelling of foot, fatigue, headache, weakness, numbness, rashes, vision problems, muscle/joint pain, urinary elimination issues, decreased sleep, and anxiety). A significant relationship was found between quality of life and education, category of COVID-19 infection, and institutionalisation during COVID-19 infection. The study concluded that quality of life is compromised among COVID-19 survivors. Thus, healthcare professionals must adopt a more individualised approach towards survivors of COVID-19 for symptom management, health promotion, meeting specific psychosocial needs, and surveillance for recurrence and specific late effects of infection with a view to adding life to days rather than days to life.

Primary Care Utilization and Cardiovascular Screening in Adult Survivors of Childhood Cancer

Cardiovascular disease is the leading noncancer cause of premature death among survivors of childhood cancer. Adult survivors of childhood cancer are largely managed by primary care practitioners (PCPs), and health care utilization patterns related to cardiovascular screening are not well described. To examine screening and health care utilization among survivors of childhood cancer at high risk for cardiovascular complications. This multicenter cross-sectional study included participants enrolled in a randomized clinical trial from 2017 to 2021. Abstracted documentation of participants' cancer history, cardiotoxic treatment exposures, and survivorship care plans were obtained from participants' PCPs spanning 2 years preceding trial enrollment. Participants were members of the Childhood Cancer Survivor Study cohort at elevated risk for ischemic heart disease or heart failure, enrolled in a randomized trial focused on improving cardiovascular risk factor control. Data were analyzed from November 2022 to July 2023. Outcomes of interest were numbers of PCP and specialist visits, cardiovascular risk factors (hypertension, dyslipidemia, and diabetes), risk factor screening, and cardiac testing. Multivariable logistic regression assessed characteristics associated with up-to-date cardiac testing at enrollment. Of 347 enrolled participants, 293 (84.4%) had evaluable medical records (median [range] age, 39.9 [21.5-65.0] years; 149 [50.9%] male) and were included in analyses. At baseline, 238 participants (81.2%) had a documented PCP encounter; 241 participants (82.3%) had undergone blood pressure screening, 179 participants (61.1%) had undergone lipid testing, and 193 participants (65.9%) had undergone diabetes screening. A total of 63 participants (21.5%) had echocardiography completed or planned. Only 198 participants (67.6%) had records referencing a cancer history. PCP documentation of prior cardiotoxic exposures was low compared with known exposures, including radiation therapy (103 participants [35.2%] vs 203 participants [69.3%]; P < .001) and anthracycline chemotherapy (27 participants [9.2%] vs 222 participants [75.8%]; P = .008). Few records referenced a need for cancer-related late effects surveillance (95 records [32.4%]). Independent factors associated with cardiac screening included documentation of increased cardiovascular disease risk (odds ratio [OR], 11.94; 95% CI, 3.37-42.31), a late-effects surveillance plan (OR, 3.92; 95% CI, 1.69-9.11), and existing cardiovascular risk factors (OR per each additional factor, 2.09; 95% CI, 1.32-3.31). This cross-sectional study of adult survivors of childhood cancer at increased risk of cardiovascular disease found low adherence to recommended cardiac testing and documentation of risk for these individuals. Improving accuracy of reporting of survivors' exposures and risks within the medical record may improve screening.

Severity of Chronic Graft-versus-Host Disease and Late Effects Following Allogeneic Hematopoietic Cell Transplantation for Adults with Hematologic Malignancy

The study aimed to determine the association of chronic graft-versus-host disease (cGVHD) diagnosis and severity with the development of subsequent neoplasms (SN) and nonmalignant late effects (NM-LE) in 2-year disease-free adult survivors following hematopoietic cell transplantation (HCT) for a hematologic malignancy. To do so, we conducted a retrospective analysis of 3884 survivors of HCT for hematologic malignancy in the Center of International Blood and Marrow Transplant Research database. We conducted a landmark analysis at the 2-year post-transplantation date, comparing first SN and NM-LE in survivors with and without cGVHD. The cumulative incidence (CuI) of SN and NM-LE were estimated through 10 years post-HCT in both groups, with death or disease relapse as a competing risk. Cox proportional hazards models were used to evaluate the associations of cGVHD and its related characteristics with the development of SN and NM-LE. The estimated 10-year CuI of SN in patients with GVHD (n=2669) and patients without cGVHD (n=1215) was 15% (95% confidence interval [CI], 14% to 17%) versus 9% (7.2% to 11%) (P < .001). cGVHD by 2 years post-HCT was independently associated with SN (hazard ratio [HR], 1.94; 95% CI, 1.53 to 2.46; P < .0001) with a standardized incidence ratio of 3.2 (95% CI, 2.9 to 3.5; P < .0001). Increasing severity of cGVHD was associated with an increased risk of SN. The estimated 10-year CuI of first NM-LE in patients with and without cGVHD was 28 (95% CI, 26% to 30%) versus 13% (95% CI, 11% to 15%) (P < .001). cGVHD by 2 years post-HCT was independently associated with NM-LE (HR, 2.23; 95% CI, 1.81 to 2.76; P < .0001). Multivariate analysis of cGVHD-related factors showed that increasing severity of cGVHD, extensive grade, having both mucocutaneous and visceral involvement, and receiving cGVHD treatment for >12 months were associated with the greatest magnitude of risk for NM-LE. cGVHD was closely associated with both SN and NM-LE in adult survivors of HCT for hematologic malignancy. Patients identified as having more severe involvement and both mucocutaneous and visceral organ involvement may warrant enhanced monitoring and screening for SNs and NM-LEs. However, caution is warranted when interpreting these results, as patients with cGVHD may have more vigilant post-transplantation health care and surveillance for late effects.

Clinic reported facilitators and barriers to pediatric cancer survivor care delivery among survivorship clinics: A fishbone analysis.

Childhood cancer survivors need regular, long-term survivor care. The Children's Oncology Group (COG) recommends that pediatric patients receive ongoing, evidence-based surveillance for late effects, beginning 2years after the completion of cancer therapy. However, at least a third of survivors are not engaging in long-term survivorship care. This study assessed facilitators and barriers to follow-up survivorship care through the perspectives of pediatric cancer survivor clinic representatives. As part of a hybrid implementation-effectiveness trial, a representative from 12 participating pediatric cancer survivor clinics completed a survey about site characteristics and a semi-structured interview on facilitators and barriers to survivor care delivery at their institution. Interviews were grounded in the socio-ecological model (SEM) framework and utilized a fishbone diagram to understand what facilitates and impedes survivor care. We ran descriptive statistics and conducted thematic analyses of the interview transcripts to create two meta-fishbone diagrams. All participating clinics (N=12) have existed for at least 5years (mean=15, median=13, range=3-31), and half (n=6, 50%) reported seeing more than 300 survivors annually. In the fishbone diagram, the top facilitators were in the SEM domain of organization, specifically with familiar staff (n=12, 100%), resource utilization (n=11, 92%), dedicated survivorship staff (n=10, 83%), and clinic processes (n=10, 83%). Common barriers were across the domains of organization, community, and policy, which included distance/transportation to the clinic (n=12, 100%), technology limits (n=11, 92%), scheduling issues (n=11, 92%), and insufficient funding/insurance (n=11, 92%). Clinic staff and provider perceptions are instrumental in understanding multilevel contextual issues related to survivor care delivery for pediatric cancer survivor clinics. Future research can aid in developing education, processes, and services to promote cancer survivor follow-up care.

Primary care utilization and cardiovascular screening in adult-aged survivors of childhood cancer: A report from the childhood cancer survivor study (CCSS).

e22020 Background: Among the half million survivors of childhood cancer in the US, cardiovascular disease (CVD) is the leading non-cancer cause of premature death. Adult survivors of childhood cancer are largely managed by community-based primary care providers (PCPs), and healthcare utilization patterns related to CVD screening and survivorship care are not well-described. Methods: Within the CCSS cohort, we conducted a randomized intervention trial (NCT03104543) focused on improving CVD risk factor control among survivors at increased risk for CVD due to prior chest radiotherapy and/or anthracycline chemotherapy. Using medical records from participants’ PCPs over the 2 years preceding trial enrollment, we ascertained the numbers of PCP and specialist visits, CVD conditions (i.e., hypertension, dyslipidemia, diabetes) and screening (i.e., blood pressure, lipid, diabetes testing, and cardiac testing [ECG, echocardiogram, or other imaging completed or planned]). We also abstracted acknowledgement of participants’ cancer history, cardiotoxic treatment exposures, or a survivorship care plan (SCP). Multivariable logistic regression assessed characteristics associated with having cardiac testing, retaining covariates associated with p &lt; 0.10 in univariate testing. Results: Of 347 enrolled participants, 293 (84%) had evaluable data (median age 40y, range 22–65; 49% female; 87% non-Hispanic White; mean 31y since childhood cancer). In the prior 2y, 81% of participants had a documented PCP office visit (median 3 visits [IQR 2–5]), 22% had a subspecialty visit (4% saw cardiology), and 16% had no visits. The prevalence of blood pressure, lipid, and diabetes screening was 82%, 57%, and 63%, respectively; 29% had cardiac testing done or planned, including 22% with echocardiography. Only 68% of participants had records referencing a history of cancer. PCP documentation of prior cardiotoxic exposures was low compared with known exposures: radiotherapy (35% vs 69%; p &lt; 0.001), anthracycline chemotherapy (9% vs 76%; p = 0.017); only 12% had any documentation noting an increased risk for CVD. Few participants’ records referenced a need for cancer-related late effects surveillance (38%), and even fewer referenced an SCP (5%). In multivariable analysis, independent predictors of cardiac testing included documentation of increased CVD risk (Odds Ratio [OR] 11.61, 95% CI 3.31–40.67), presence of a late effects surveillance plan (OR 3.71, 95% CI 1.62–8.48), and existing CVD conditions (modeled as 0, 1, or 2+ conditions; OR 2.21, 95% CI 1.41–3.47, for each additional level). Conclusions: Adult survivors of childhood cancer at increased risk of CVD had low rates of cardiac testing and documentation of risk in PCP medical records. Increasing participant and PCP awareness of CVD risks and late effects surveillance recommendations may improve screening.

Adherence to surveillance guidelines in survivors of hodgkin lymphoma: A report from the Childhood Cancer Survivor Study (CCSS).

10047 Background: Pediatric Hodgkin lymphoma (HL) is a highly curable disease. However, survivors are at high risk for long-term complications of therapy. The impact of sociodemographic and clinical factors on adherence to late effects surveillance guidelines is unknown. Methods: The CCSS is a retrospective cohort with prospective follow-up of survivors diagnosed from 1970-1999. HL survivors enrolled in CCSS who responded to a 2017 questionnaire were included. We assessed adherence to the Children’s Oncology Group surveillance guidelines for cardiomyopathy, breast cancer, colorectal cancer, and skin cancer. Multivariate logistic regression was used to estimate adjusted odds ratios and 95% confidence intervals (aOR [95% CI]) for sociodemographic and clinical risk factors associated with adherence. Estimates were adjusted for area deprivation index (ADI); chronic health conditions; recent (≤2 years) routine check-up, cancer center or survivorship clinic visit; and possession of a survivorship care plan (SCP). Results: 1,380 HL survivors (45.6% male; median age 43.6 years, range 21.6-65.9 years) responded, of whom 55.5% were at elevated risk for cardiac dysfunction, 71.0% for breast cancer, 83.5% for skin cancer, and 39.4% for colorectal cancer. Of those at elevated risk, 42.7%, 19.9%, 31.3% and 48.9% were adherent to the guidelines for cardiac, breast, skin, and colorectal screening, respectively. Predictors of adherence to cardiac dysfunction guidelines were male sex (aOR 1.7 [1.1-2.6]), having children (aOR 1.6 [1.1-2.4]), recent routine checkup (aOR 4.0 [1.3-13.1]), recent visit to a cancer center or survivorship clinic (aOR 6.2 [3.9-10.0]), and possession of a SCP (aOR 3.1 [1.9-5.0]). Adherence to breast cancer guidelines was higher in those who were unmarried (aOR 2.1 [1.0-4.1]), had a recent visit to a cancer center or survivorship clinic (aOR 3.7 [2.0-7.0]), and possessed a SCP (aOR 3.5 [1.5-8.3]). Adherence to skin cancer guidelines was higher in those &gt; 14 years at diagnosis (aOR 1.8 [1.3-2.4]), living in a low deprivation area (ADI 1-24.9) compared to a high deprivation area (ADI 75-100) (aOR 3.4 [1.9-5.9]), employed (aOR 1.8 [1.1-2.9]), &gt; 30 years from diagnosis (aOR 2.4 [1.6-3.6]), with a recent routine check-up (aOR 3.6 [1.1-12.5]), and recent cancer care (aOR 2.4 [1.6-3.5]). Adherence to colorectal cancer guidelines was higher in those with grade 3-4 chronic health conditions (aOR 1.9 [1.1-3.3]). Conclusions: Less than 50% of HL survivors are adherent to screening guidelines. Sociodemographic risk factors are significant predictors of non-adherence, particularly to skin cancer screening guidelines. This threatens to potentiate outcome disparities among HL survivors.

Abstract IA033: The impact of race, ethnicity, culture, and well-being among childhood cancer survivors and their parent caregivers

Abstract The number of childhood cancer survivors (CCS) has increased over the past 30 years due to improvements in the treatment of cancers affecting this population; however, most CCS experience late adverse effects from their cancer treatment. In many cases, when a child is diagnosed with cancer, parents serve as primary caregivers throughout their child's cancer journey by providing them with medical, informational, and emotional support. Even when CCS become young adults, parents often remain involved with medical care and help CCS transition from pediatric to adult-focused survivorship care. Unfortunately, the proportion of young adult CCS engaged in survivorship follow-up care rapidly declines with increasing age and time since treatment. Disengagement in follow-up care results in inadequate medical surveillance for late effects and a missed opportunity for survivorship-focused care, including psychosocial screening and supportive care referral. The decline in long-term follow-up care is multifactorial and includes patient, provider, and system-related barriers to care. This session will present a brief overview of CCS and parents from racial and ethnic minority backgrounds who experience significant health disparities, including inequities in cancer treatment and access to care compared to non-Hispanic whites. This session will also highlight the work from the Center for Young Adult Cancer Survivorship Research; a dual institutional center focused on survivorship care and quality of life among multi-ethnic survivors (predominantly Hispanic). Recent research examining racial/ethnic disparities included other related factors such as socioeconomic status, language preference, nativity, and acculturation, which provided insight into how to best address these multifactorial aspects of racial/ethnic disparities in this population. Lastly, this session will review a recent report by Mobley et al., 2021 that described systematic barriers to CCS survivorship care and discussed new opportunities to address these health care barriers. Citation Format: Carol Y. Ochoa. The impact of race, ethnicity, culture, and well-being among childhood cancer survivors and their parent caregivers [abstract]. In: Proceedings of the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2022 Sep 16-19; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr IA033.

Developing a Provincial Surveillance and Support System for Childhood Cancer Survivors: Multiphase User-Centered Design Study.

BackgroundSurvivors of childhood cancer are at lifelong risk of morbidity (such as new cancers or heart failure) and premature mortality due to their cancer treatment. These are termed late effects. Therefore, they require lifelong, risk-tailored surveillance. However, most adult survivors of childhood cancer do not complete recommended surveillance tests such as mammograms or echocardiograms.ObjectiveIn partnership with survivors, family physicians, and health system partners, we are designing a provincial support system for high-priority tests informed by principles of implementation science, behavioral science, and design thinking.MethodsOur multiphase process was structured as follows. Step 1 consisted of a qualitative study to explore intervention components essential to accessing surveillance tests. Step 2 comprised a workshop with childhood cancer survivors, family physicians, and health system stakeholders that used the Step 1 findings and “personas” (a series of fictional but data-informed characters) to develop and tailor the intervention for different survivor groups. Step 3 consisted of intervention prototype development, and Step 4 involved iterative user testing.ResultsThe qualitative study of 30 survivors and 7 family physicians found a high desire for information on surveillance for late effects. Respondents indicated that the intervention should help patients book appointments when they are due in addition to providing personalized information. Insights from the workshop included the importance of partnering with both family physicians and survivorship clinics and providing emotional support for survivors who may experience distress upon learning of their risk for late effects. In our user-testing process, prototypes went through iterations that incorporated feedback from users regarding acceptability, usability, and functionality. We sought to address the needs of survivors and physicians while balancing the capacity and infrastructure available for a lifelong intervention via our health system partners.ConclusionsIn partnership with childhood cancer survivors, family physicians, and health system partners, we elucidated the barriers and enablers to accessing guideline-recommended surveillance tests and designed a multifaceted solution that will support survivors and their family physicians. The next step is to evaluate the intervention in a pragmatic randomized controlled trial.

Realist Review of Care Models That Include Primary Care for Adult Childhood Cancer Survivors

Appropriate models of survivorship care for the growing number of adult survivors of childhood cancer are unclear. We conducted a realist review to describe how models of care that include primary care and relevant resources (eg, tools, training) could be effective for adult survivors of childhood cancer. We first developed an initial program theory based on qualitative literature (studies, commentaries, opinion pieces) and stakeholder consultations. We then reviewed quantitative evidence and consulted stakeholders to refine the program theory and develop and refine context-mechanism-outcome hypotheses regarding how models of care that include primary care could be effective for adult survivors of childhood cancer. Effectiveness for both resources and models is defined by survivors living longer and feeling better through high-value care. Intermediate measures of effectiveness evaluate the extent to which survivors and providers understand the survivor’s history, risks, symptoms and problems, health-care needs, and available resources. Thus, the models of care and resources are intended to provide information to survivors and/or primary care providers to enable them to obtain/deliver appropriate care. The variables from our program theory found most consistently in the literature include oncology vs primary care specialty, survivor and provider knowledge, provider comfort treating childhood cancer survivors, communication and coordination between and among providers and survivors, and delivery/receipt of prevention and surveillance of late effects. In turn, these variables were prominent in our context-mechanism-outcome hypotheses. The findings from this realist review can inform future research to improve childhood cancer survivorship care and outcomes.

Utilization of Cardiac Surveillance in Pediatric Blood Cancer Survivors Who Received Anthracycline-Based Therapy Differs By Age: A Claims-Based Analysis

Background: The Children's Oncology Group Long-Term Follow-up Guidelines recommend surveillance for late effects in pediatric cancer survivors based on therapeutic exposures. In particular, the Guidelines recommend an echocardiogram, or comparable imaging, every 2 to 5 years to evaluate cardiac function in survivors exposed to anthracycline chemotherapy. However, little is known about the real-world utilization of cardiac surveillance tests following the completion of cancer therapy.Objective: This study fills this gap by describing the proportion of anthracycline-treated survivors of pediatric cancer who received surveillance for cardiac function following the completion of their cancer therapy.Method: We developed an algorithm to identify a cohort of pediatric cancer survivors using the IBM MarketScan ® Commercial Claims and Encounters Database (a nationwide private insurance enrollment and claims database). The cohort for inclusion was enrollees who (1) received anthracycline for blood cancer (leukemia or lymphoma); (2) aged ≤21 years at cancer diagnosis; (3) completed all cancer therapy between 2009 and 2018; and (4) remained continuously insured for at least one year post-therapy. Outcomes assessed included the receipt of: (1) echocardiogram, (2) cardiac magnetic resonance imaging (MRI), (3) multiple gate acquisition (MUGA) scan, and (4) any of the aforementioned cardiac surveillance tests over the 5-year period after the completion of all cancer therapy. The Kaplan-Meier (K-M) method was used to estimate the cumulative incidence of an event post-therapy, where the event was defined as the initial healthcare claim for a cardiac surveillance test. Individuals were censored if they had not received a test by study termination or were lost to follow-up at any time during the 5 years post-therapy. Multivariate Cox proportional hazard models were estimated to identify the demographic and cancer-related factors strongly associated with the initial test receipt.Results: Among 1,914 eligible blood cancer survivors, 259 (13.5%) survivors received a hematopoietic stem cell transplantation (HSCT; Table 1). The K-M estimated probability of receiving a cardiac surveillance test by 5 years post-therapy was 61.0% (95% Confidence Interval [CI]: 57.2% to 64.7%), with the median time to the initial test being 2.6 years (95% CI: 2.2 to 3.1 years) from therapy completion. The vast majority of cardiac surveillance test users underwent an echocardiogram (n=850; versus only 10 who had a cardiac MRI, and 14 who had a MUGA scan) by the end of their follow-up period.The proportion of survivors who had an initial cardiac test increased over time but varied by age at cancer therapy completion and the receipt of HSCT. The K-M estimated probability of receiving an initial test by 5 years post-therapy was: 86.0% (95% CI: 77.3% to 91.6%) for children (ages ≤11 years), 85.0% (95% CI: 75.4% to 91.1%) for adolescents (ages 12-17 years), and 36.8% (95% CI: 32.6% to 41.0%) for young adults (ages 18-28 years; Figure 1). Multivariate Cox models showed that compared with children, adolescents were more likely to receive an initial cardiac test (Hazard Ratio [HR] = 1.3; 95% CI: 1.1 to 1.5), while young adults were less likely to receive a test (HR = 0.4; 95% CI: 0.3 to 0.5). In addition, survivors who received a HSCT were more likely than those who did not to complete an initial cardiac test (HR=1.8; 95% CI: 1.5 to 2.2).Conclusions: This nationwide, claims data-based study showed that a substantial proportion of anthracycline-exposed survivors of blood cancers had not completed a cardiac surveillance test within 5 years post-therapy. Within this high-risk population, young adults were significantly less likely to receive surveillance testing for the prevention and early detection of cardiac dysfunction. [Display omitted] DisclosuresNo relevant conflicts of interest to declare.

Late effects care for childhood brain Tumor Survivors: A Quality-Improvement Initiative

Childhood and adolescent brain tumor survivors are at risk for long-term consequences of therapy. We reviewed adherence to long-term follow-up (LTFU) guidelines, assessed provider perspectives, and studied the needs, experience and quality of life (QOL) of pediatric malignant brain tumor survivors in the McMaster Children’s Hospital Neuro-Oncology clinic. LTFU areas for improvement were evaluated using an anonymous health provider needs assessment questionnaire. The Cancer Care Experience Questionnaire (CCEQ), Cancer Worry Scale (CWS), Self-Management Skills Scale (SMSS), and PedsQL measured parents/patients’ needs and QOL. Individual care plans were based on the Children’s Oncology Group (COG) LTFU guidelines. Based on 17 responses, staff perceived areas for improvement included: increased multi-disciplinary participation, improved patient education and increased surveillance for therapy-related late effects. Thirty-two families participated, most felt they received high-quality care. Mean cancer worry scores were low (71.8 (± 28.4)). Survivors reported limited self-management skills (58.5 (±18.2)), requiring support with medical needs and activities of daily living. Overall median QOL scores were ‘good’ (parental report 72.3 (±17.7), survivor 68.2 (±16.6)). Utilizing survivorship guidelines and assessments from patients, caregivers and health providers, we implemented improvements in our provision of neuro-oncology survivorship care. Lessons learned may assist other LTFU programs.

European PanCareFollowUp Recommendations for surveillance of late effects of childhood, adolescent, and young adult cancer

BackgroundLong-term follow-up (LTFU) care for childhood, adolescent, and young adult (CAYA) cancer survivors is essential to preserve health and quality of life (QoL). Evidence-based guidelines are needed to inform optimal surveillance strategies, but many topics are yet to be addressed by the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG). Therefore, the PanCareFollowUp Recommendations Working Group collaborated with stakeholders to develop European harmonised recommendations in anticipation of evidence-based IGHG guidelines. MethodsThe PanCareFollowUp Recommendations Working Group, consisting of 23 late effects specialists, researchers, and survivor representatives from nine countries, collaborated in the first Europe-wide effort to provide unified recommendations in anticipation of evidence-based guidelines. A pragmatic methodology was used to define recommendations for topics where no evidence-based IGHG recommendations exist. The objective was to describe the surveillance requirements for high-quality care while balancing the different infrastructures and resources across European health care systems. The process included two face-to-face meetings and an external consultation round involving 18 experts from 14 countries. ResultsTwenty-five harmonised recommendations for LTFU care were developed collaboratively and address topics requiring awareness only (n = 6), awareness, history and/or physical examination (n = 9), or additional surveillance tests (n = 10). ConclusionsThe PanCareFollowUp Recommendations, representing a unique agreement across European stakeholders, emphasise awareness among survivors and health care providers in addition to tailored clinical evaluation and/or surveillance tests. They include existing IGHG guidelines and additional recommendations developed by a pragmatic methodology and will be used in the Horizon 2020–funded PanCareFollowUp project to improve health and QoL of CAYA cancer survivors.

Association of language proficiency, sociodemographics, and neurocognitive functioning in dual-language Latino survivors of childhood acute lymphoblastic leukemia and lymphoma.

Survivors of childhood acute lymphoblastic leukemia and lymphoma (ALL/LL) are at risk for cognitive dysfunction, but little is known about its relationship with language proficiency and sociodemographics. In this cross-sectional cohort study of Latino survivors of childhood ALL/LL, English and Spanish language proficiency and cognitive and academic functioning were measured and their associations determined using paired t-tests, Pearson correlations, and linear regressions. Participants (N=57; 50.9% female) had mean ages (years ± SD) of 4.3 ± 2.6 at diagnosis and 10.6 ± 2.9 at testing (range 6-16); mean time post treatment was 3.7 ± 2.6years. The majority (73.7%) had low socioeconomic status (SES). Most (78.8%) were dual-language learners in English and Spanish. English proficiency was graded as limited-to-fluent and was significantly higher than Spanish (p<.001). Higher SES was correlated with higher English proficiency (r=0.31, p=.020). Males had higher Spanish proficiency (r=-0.32, p=.034). Controlling for SES and sex, English proficiency accounted for 43% of cognitive functioning variance (F=14.86, p<.001), 55% of reading comprehension variance (F=22.14, p<.001), and 21% of mathematics variance (F=5.76, p=.002). Low language proficiency correlated with SES but was independently associated with lower cognitive and academic functioning. Research and surveillance for neurocognitive late effects in Latino ALL/LL survivors should incorporate measures of language proficiency and SES to account for their effects on cognitive and academic functioning.

Implementation of a clinic to facilitate the transition from pediatric to adult cancer survivorship care.

e13519 Background: Transitions from pediatric to adult care settings are challenging for adults with a history of complex childhood illness such as cancer. We developed a new clinical model to support young adult survivors of leukemia and bone marrow transplant (BMT) with transitioning from pediatric to adult focused survivorship care. Methods: We established the GREAT (Getting Regular Evaluations After Treatment) survivorship clinic as a collaboration between the adolescent/young adult (AYA) cancer program, pediatric oncologists, and specialists in adult hematologic malignancies. New patient appointments consist of two back-to-back visits: (1) a medical survivorship visit with a pediatric oncologist and an oncologist who specializes in hematologic malignancies/BMT to review the treatment history, medical issues, risk of late effects, and surveillance recommendations, and (2) an AYA-focused visit with a nurse practitioner to review fertility, education/career, and psychosocial concerns. Patients receive a treatment summary through the Passport for Care, based on pediatric survivorship guidelines. The clinic team then communicates with the patient’s primary care provider (PCP) or assists the patient with finding a PCP. Results: Since August 2020, we have seen 17 patients (12 telehealth, 5 in-person, 53% male, 47% non-Hispanic white, 41% Hispanic/Latino, 12% Asian). The median age at clinic visit was 28 years (range 24-39) and median time since treatment was 15 years (range 1-29). Patients were referred through the AYA cancer program: 8 had been regularly followed in the pediatric survivorship clinic, 2 had not been seen in pediatric oncology/survivorship for many years, 3 were treated as children but most recently seen by adult oncologists, and 4 were treated by adult oncologists and referred for AYA-specific survivorship care. Twelve (71%) patients had a PCP they see regularly, while 2 did not have a PCP and 3 were not sure. Communication with PCPs consisted of faxing the clinic note and calling the PCP’s office. All PCPs were receptive and expressed interest in receiving survivorship care recommendations; some preferred to order late effects surveillance imaging/labs, while others preferred the GREAT clinic team to do so, illustrating the value of two-way communication. Thirteen (76%) patients participated in post-clinic interviews. All stated they would recommend the clinic to others. Common themes from interviews included understanding more about their past treatment and having greater confidence managing their health. Conclusions: The model for facilitating care transitions was highly regarded by young adult cancer survivors and highlights opportunities for improving self-management and care coordination. Future directions include expanding to more cancer types, addressing barriers to primary care follow-up, and exploring shared care or co-management with PCPs.

Mortality among five-year survivors of childhood cancer: Results over five decades of follow-up in the Childhood Cancer Survivor Study.

10013 Background: Adult survivors of childhood cancer are at greater risk for late mortality compared to the general population due to cancer and its treatment. Risk factors, patterns and specific causes of late mortality across the lifespan are not well established. Methods: All-cause, cause-specific, and health-related late mortality (HRM; excludes death from primary cancer and external causes) &gt; 5 years from diagnosis were evaluated in survivors diagnosed &lt; 21 years of age between 1970-1999. Cause of death was based on ICD codes from the National Death Index through December 2017. Cumulative mortality, mortality rates and standardized mortality ratios (SMRs) with 95% confidence intervals (CIs) were estimated, overall and in 5- and 10-year survival periods. Results: Among 34,230 survivors (median time from diagnosis 29.1 years, range 5.0 - 48.0) the 40-year cumulative mortality was 23.3% (95% CI 22.7 - 24.0). Of 5,916 deaths, 3,061 (51.2%) were attributable to health-related causes including subsequent neoplasm (n = 1,458), cardiac (n = 504), and pulmonary causes (n = 238). All-cause mortality by time from diagnosis demonstrated a U-shaped distribution: 10.1 deaths/1000 person-years at 5-9 years, largely due to recurrence of the primary cancer, decreasing to 4.1 at 15-19 years before increasing to 18.5 at 40-48 years, attributable to an increasing mortality rate from HRM (2.3 at 5-9 years; 17.0 at 40-48 years). For the interval 5-9 years from diagnosis, survivors had an 18.1-fold (95% CI 17.3-18.9) higher risk of death from any cause, and a 13.1-fold (11.9-13.4) higher risk for HRM when compared to the general population. Although the SMRs declined with duration of follow-up, survivors had a 4-fold higher risk of death overall, attributable to a more than 4-fold increased risk of HRM. HRM 40-48 years from diagnosis was largely attributable to an increased risk of death due to subsequent neoplasm (SMR 6.0, 95% CI 4.9-7.2), cardiac (3.9, 2.9-5.0) and pulmonary (5.6, 3.6-8.4) causes. Cause-specific mortality remained markedly elevated at 40-48 years from diagnosis: CNS malignancy (SMR 11.7, 95% CI 5.4-22.3), benign meningioma (171.3, 34.4-500.5), valvular heart disease (39.8, 21.2-68.1), cardiomyopathy (10.4, 4.5-20.5), stroke (7.9, 4.6-12.6), and renal failure (5.6, 1.8-13.2). HRM was significantly higher among the youngest group of survivors (0-4 years at diagnosis), non-Hispanic blacks and those who received radiation to the brain, chest or total body, or who were exposed to anthracycline, alkylating or platinum chemotherapy. Conclusions: After five decades, aging survivors consistently remain at higher risk of all-cause mortality compared to the general, aging population, primarily due to a persistent 4-fold increased risk of HRM. Continued late-effects surveillance and reduction of therapies associated with long-term morbidity and increased mortality is essential.