Pediatric Oncology Program Research Articles

Bereaved Parents’ Perspectives on Financial Toxicity at End of Life for Children with Cancer: A Qualitative Study

ObjectiveTo explore financial toxicity (FT) experienced by the parents of children with cancer at end-of-life (EOL), including exploring differences by race and ethnicity. Study designWe performed secondary analysis of semi-structured interviews of bereaved parents’ perspectives on quality EOL care. Fifty-five interviews were conducted in California and Alabama representing 48 children (0-21 years at time of death) who died of cancer ≥6 months prior. Quotes related to FT were identified and iteratively grouped into themes without an a priori framework. ResultsMost participants were non-Hispanic White (30; 55%), and the most common diagnoses were non-central nervous system solid tumors (16; 33%) and central nervous system tumors (16; 33%). Children died at a mean age of 11 and a median of 4 years prior to the interview. Almost all parents (52; 95%) discussed FT, including all Black and Hispanic parents. Parents identified transportation, housing, other basic needs, funeral costs, and medical costs as well as work disruptions as contributors to FT at EOL. Barriers to financial wellness included navigating insurance, insufficient financial support from the hospital, and long-term FT from treatment. Many parents discussed how the hospital and community served as facilitators of financial wellness. In some cases, finances prevented families from accessing nursing services and mental health support and affected EOL decisions. ConclusionsAs FT affected almost all families’ EOL experience, pediatric oncology programs should routinely screen for FT at EOL and ensure they have the resources to respond.

An Integrative Pediatric Oncology Program Addressing Parents’ Quality of Life-Related Concerns

BackgroundParents of children with cancer face bio-psycho-social-spiritual concerns which can significantly reduce quality of life (QoL). We examined the impact of an integrative oncology (IO) intervention on QoL-related concerns among parents of children in a pediatric hematology-oncology department. MeasuresThe study was prospective, controlled, nonrandomized and patient-preferenced. Parents of children recently (≤6 weeks) diagnosed with cancer were assessed using the measure yourself concerns and wellbeing (MYCaW), Edmonton Symptom Assessment Scale (ESAS) and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). Parents in both groups were reassessed after three weeks. InterventionAn IO consultation was provided, with training in daily relaxation-breathing and manual treatments, and guidance on herbal medicine. OutcomesOf 68 parents consenting to participate, 37 (54%) underwent the intervention with 31 serving as controls. Multivariate analysis found the IO intervention group to contain more Hebrew-speakers (OR=5.96, 95% CI=1.3-27.3, P=0.022); females (OR=5.23, 95% CI=1.1-24.8, P=0.038); and report pain (OR=1.2, 95% CI=1.0-1.4, P=0.045) and impaired appetite on ESAS (OR=1.23, 95% CI=1.01-1.48, P=0.034) when compared to controls. Only the intervention group showed improved baseline-to-3-week scores for physical functioning (P<0.001), cognitive functioning (0=0.018) and fatigue on EORTC (P<0.001); and for ESAS appetite (P<0.001) and anxiety (P=0.02). ESAS sleep increased only in controls (P=0.029). Conclusions/Lessons LearnedIO interventions in pediatric hematology-oncology addressing QoL-related concerns among parents are feasible, potentially increasing predominantly physical symptoms and functioning. Further research is needed to confirm these “real-world” clinical outcomes, and the role of IO in ”Caring for the Caregiver”.

Psychosocial burden after the death of a child from cancer: Results of a bereaved parent survey

Parents experience lasting psychological distress after a child’s death from cancer. Limited evidence exists regarding difficult life events, duration of psychosocial impacts, and associated risk factors among bereaved parents. Alex’s Lemonade Stand Foundation surveyed self-selected, bereaved parents regarding difficult life events and psychosocial wellbeing (life satisfaction, unanswered questions, and missing the care team) through a public, cross-sectional survey. 176 bereaved parents (89% mothers) participated a median of 7 y after their child’s death. The most difficult events were family vacations (80%), their child’s birthday (80%), and anniversary of their child’s death (76%). Only the latter did not improve with time. Greater life satisfaction was associated with male sex (ARR = 1.2, 95% CI:1.1–1.4) and being married/partnered (ARR = 1.2, 95% CI = 1.0–1.3). Having unanswered questions and missing the child’s team were associated with annual income <$50,000 (ARR = 1.2, 95% CI:1.1–1.2; ARR = 1.2, 95% CI:1.0–1.3, respectively). Pediatric oncology programs need robust bereavement programs that include prolonged contact with families.

Impact of Time-to-Antibiotic Delivery in Pediatric Patients With Cancer Presenting With Febrile Neutropenia.

Febrile neutropenia (FN) in pediatric patients with cancer can cause severe infections, and prompt antibiotics are warranted. Extrapolated from other populations, a time-to-antibiotic (TTA) metric of <60 minutes after medical center presentation was established, with compliance data factoring into pediatric oncology program national rankings. All FN episodes occurring at Vanderbilt Children's Hospital (2007-February 2022) and a sample of episodes from Colorado Children's Hospital (2012-2019) were abstracted, capturing TTA and clinical outcomes including major complications (intensive care unit [ICU] admission, vasopressors, intubation, or infection-related mortality). Odds ratios (ORs) were adjusted for age, treatment center, absolute neutrophil count, hypotension presence, stem-cell transplant status, and central line type. A total of 2,349 episodes were identified from Vanderbilt (1,920) and Colorado (429). Only 0.6% (n = 14) episodes required immediate ICU management, with a median TTA of 28 minutes (IQR, 20-37). For the remaining patients, the median TTA was 56 minutes (IQR, 37-90), and 54.3% received antibiotics in <60 minutes. There were no significant associations between TTA (<60 or ≥60 minutes) and major complications (adjusted OR, 0.99 [95% CI, 0.62 to 1.59]; P = .98), and a TTA ≥60 minutes was not associated with any type of complication. Similarly, TTA, when evaluated as a continuous variable, was not associated with a major (OR, 0.99 [95% CI, 0.94 to 1.04]; P = .69) nor any other complication in adjusted analysis. There is no clear evidence that a reduced TTA improves clinical outcomes in pediatric oncology FN and thus it should not be used as a primary quality measure.

Comprehensive pediatric cancer care in the community oncology setting: 2022 Landscape survey results.

92 Background: A first step in providing guideline-endorsed, cancer-related psychosocial resources for children with cancer treated in community oncology settings is screening for need. We describe the current landscape of screening for distress and social determinants of health (SDoH) for children treated in NCI-Community Oncology Research Program (NCORP) practices. Methods: NCORP practice groups completed the Landscape Survey in 2022 to describe infrastructure, resources, and research capacity. Practice groups were assessed for capacity to provide oncology care for pediatric patients, presence of a Pediatric Oncology Program (POP), and the annual pediatric cancer cases seen. Among practice groups with a POP, we describe the proportion with routine screening for distress (psychosocial and financial) and SDoH. Results: Of 271 responding NCORP practice groups, 54 (20%) reported providing oncology care for children; 47 (87%) of these had a dedicated POP. Of these 47 practice groups, 33 reported the number of new pediatric cases seen per year (range 7-126). Of the seven practices that reported providing oncology care for children, but did not have a dedicated POP, the practice either did not report the number of pediatric cases (n=3) or fewer than 2% of annual cancer cases were children aged 0-14 years. Among the 47 practices with a dedicated POP, 12 were affiliated with a Minority- Underserved NCORP. Geographically, most of these NCORPs (n=18, 38%) were located within the South, followed by the Midwest (n=11, 23%), the Northeast and the West (both, n=9, 19%). Within the 47 NCORP practices with a POP, but not specifically within the POP, 41 (87%) conducted routine psychosocial distress screening, 39 (83%) routine financial screening (other than insurance/billing purposes), and 41 (87%) screened for SDoH with a variety of tools. Most of the practices (n=33, 70%) screened for all three indicators of need for cancer-related resources. Conclusions: This analysis describes the settings where children with cancer are treated in the community and the infrastructure across NCORP practices with a POP. These data are indicative of potential research capacity and will be used to develop future Cancer Care Delivery Research (CCDR) studies through the NCORP. Future research will seek to identify multi-level barriers and facilitators to linking families with identified needs to available resources and to resource uptake.

Bereaved parents’ perspectives on financial toxicity at end-of-life for children with cancer.

287 Background: Families of children with cancer often experience financial toxicity. However, little is known about families’ experiences with financial toxicity at end-of-life (EOL). Therefore, we qualitatively explored bereaved families’ experiences related to financial toxicity. Methods: We performed a secondary analysis of semi-structured interviews of bereaved parents about their perspectives on high-quality EOL care. The interviews were conducted with bereaved parents in California and Alabama whose child (0-21 years at the time of death) died of cancer ≥6 months before the interview. Quotes related to financial experiences were identified and then grouped thematically. Results: Fifty-five parents, representing forty-eight children were interviewed. Twenty-eight parents (51%) were recruited in California and twenty-seven (49%) in Alabama. The majority of participants were non-Hispanic White (29; 52%), fourteen (25%) were Hispanic, and twelve (22%) were Black. The most common cancer diagnoses were non-central nervous system solid tumors (18, 38%). Children died at a mean age of 11 years (SD=6 years) and a median of 4 years (IQR=2-8 years) prior to the interview. Almost all families (52, 95%) discussed themes related to financial toxicity. Parents identified transportation, housing, other basic needs, funeral costs, and medical costs as contributors to financial toxicity at EOL. Barriers to financial wellness included battling insurance companies, insufficient financial support from the hospital, and the cumulative financial toxicity of treatment. Many parents discussed how the hospital and community served as facilitators of financial wellness by connecting them with resources and providing financial support. In some cases, finances prevented families from accessing services such as hospice care mental health support; financial constraints also affected EOL decisions. Conclusions: Almost all families discussed themes related to financial toxicity, despite not being specifically asked about financial toxicity. In particular, families were financially impacted by basic needs, medical bills, and funeral costs at the end of their child’s life. They identified numerous community and hospital-based barriers and facilitators of financial wellness. It is critical that pediatric oncology programs routinely screen for financial hardship at EOL (and into bereavement). Further research is also needed on how best to support these families’ financial struggles at this challenging time.

Unmasking ethnic disparities in Asian representation in U.S. oncology training programs.

e18548 Background: Asian Americans are not traditionally considered underrepresented in oncology; however, prior analyses of oncology workforce representation have not disaggregated Asian race by ethnicity. This study assessed Asian representation in U.S. oncology training programs by country of origin. Methods: All trainees with self-reported race/ethnicity data in U.S. Radiation (Rad Onc), Medical (Med Onc), Pediatric (Peds Onc), and Surgical Oncology (Surg Onc) programs were identified using 2013-2022 data from the Association of American Medical Colleges. Complex Surgical, Gynecologic, and Orthopedic Oncology programs were included within the Surg Onc category. Asian race was disaggregated by available subgroups (i.e., Bangladeshi, Cambodian, Chinese, Filipino, Indian, Indonesian, Japanese, Korean, Pakistani, Taiwanese, and Vietnamese). Asians with &gt; 1 or no subgroup classification were excluded. Representation quotients (RQ) were used to measure representation relative to the U.S. census population adjusted by age and year, whereby RQ = 1 denoted proportional representation; RQ &gt; 1 and RQ &lt; 1 denoted representation greater or less than expected; RQ = 0 denoted no representation. Linear regression assessed trends in RQ over time for each subgroup. Results: Overall, 27% of oncology trainees identified as Asian (31% Rad Onc, 30% Med Onc, 30% Peds Onc, 19% Peds Onc, 16% Surg Onc). Apart from Indonesians in Rad Onc (median [IQR] RQ, 1.21 [0-3.54]), RQ = 0 for all Indonesians, Cambodians, and Laotians, while median RQ was &lt; 1 for all Filipinos, regardless of program type. In contrast, all other Asian ethnic subgroups had median RQ values &gt; 1, except for Taiwanese and Vietnamese fellows in Surg Onc (0.84 [0.45-0.96]) and Peds Onc (0.43 [0.30-0.63]), respectively. Among Filipinos, median RQ values for Med Onc (0.39 [0.31-0.48]) and Peds Onc (0.51 [0.45-0.58]) were approximately half that of their respective primary residencies (Internal Medicine, 0.75 [0.75-0.73]; Pediatrics: 0.97 [0.99-91]). From 2013-2021, representation remained largely stable for all ethnic groups, with the exception of increased representation among Taiwanese Med Onc (RQ slope [95%CI], 2.96 [1.81, 4.11]; p&lt; 0.001) and Indonesian Rad Onc (0.94 [0.53 to 1.35]; p= 0.001) trainees; and decreased representation among Indian Med Onc (-0.44 [-0.65, -0.23]; p= 0.002) and Korean Surg Onc (-0.04 [-0.61, -0.20], p= 0.003) trainees. No changes in Filipino representation were observed. Conclusions: In this first workforce analysis of oncology trainees to disaggregate Asian race by ethnicity, Cambodians, Filipinos, Indonesians, and Laotians were consistently underrepresented in oncology training programs. Further investigation is needed to understand these differences to ensure that efforts to promote diversity in oncology avoid overlooking ongoing imbalances in representation and inclusion in the U.S. physician workforce.

Introduction to interventional radiology's role in palliative care for children with cancer: A COG Diagnostic Imaging Committee/SPR Oncology Committee White Paper.

As palliative care continues to be an area of increasing emphasis in pediatric oncology programs, it is important to raise awareness about minimally invasive, image-guided procedures that can supplement more conventional palliative interventions, such as systemic analgesics, external beam radiation, and locoregional anesthesia. These procedures, when performed for appropriately selected patients, can often facilitate discharge from an inpatient facility, and help patients meet their end-of-life goals. This article specifically discusses three palliative procedures performed by interventional radiologists that can assist pediatric palliative care teams in: (a) percutaneous thermal ablation of painful bone metastases, (b) cryoneurolysis, and (c) tunneled drainage catheter placement for malignant pleural effusions and ascites.

Drug sensitivity profiling of 3D tumor tissue cultures in the pediatric precision oncology program INFORM

The international precision oncology program INFORM enrolls relapsed/refractory pediatric cancer patients for comprehensive molecular analysis. We report a two-year pilot study implementing ex vivo drug sensitivity profiling (DSP) using a library of 75–78 clinically relevant drugs. We included 132 viable tumor samples from 35 pediatric oncology centers in seven countries. DSP was conducted on multicellular fresh tumor tissue spheroid cultures in 384-well plates with an overall mean processing time of three weeks. In 89 cases (67%), sufficient viable tissue was received; 69 (78%) passed internal quality controls. The DSP results matched the identified molecular targets, including BRAF, ALK, MET, and TP53 status. Drug vulnerabilities were identified in 80% of cases lacking actionable (very) high-evidence molecular events, adding value to the molecular data. Striking parallels between clinical courses and the DSP results were observed in selected patients. Overall, DSP in clinical real-time is feasible in international multicenter precision oncology programs.

DDEL-01. The role of key pharmacodynamic and pharmacokinetic parameters in drug response prediction of pediatric tumors in the precision oncology study INFORM

Abstract INTRODUCTION: The INFORM (INdividualized Therapy FOr Relapsed Malignancies in Childhood) study is a European pediatric precision oncology program. Using state of the art molecular assays, INFORM aims for identification of targetable genetic alterations, matching drugs and clinical trials. High evidence targets were associated with doubling of progression free survival when patients received a matching drug. However, the fraction of tumors with high evidence drug targets remains low requiring functional layers of information such as drug sensitivity profiling. The aim of this project is to identify and investigate the role of key pharmacodynamic and pharmacokinetic parameters to improve the predictivity of ex vivo drug response of pediatric tumors. METHODS: Positive control cell lines harboring specific mutations (n=7) and primary tumors (n=121) from INFORM, including 10% ependymomas, 7% high grade gliomas, 5% neuroblastomas and 4% medulloblastomas, were profiled ex vivo using a library of n=76 clinically relevant oncology drugs in a 384 well plate format. Metabolic activity was measured after 72h of treatment. Quality control (QC) was done using the robust z-factor, correlation of replicates and mean negative control. Hit selection was based on maximum percentage inhibition, normalized AUC metric (DSSasym) and maximum serum concentration (Cmax) of the drug. Clinical follow-up was collected using a questionnaire. RESULTS: A linear mixed model revealed the DSSasym to be the strongest pharmacodynamic parameter in drug prediction in cell lines. Drug screens of n=105 INFORM cases passed QC. Application of the filtering parameters resulted in prediction of n=1-16 drugs/case (min-max). A data base of published pediatric pharmacokinetic parameters of the drug library was generated. Analysis of predictive parameters and clinical follow-up of clinical samples is ongoing. CONCLUSION: Including pharmacodynamic as well as clinical pharmacokinetic parameters is paramount to identify potentially clinically active compounds from ex vivo drug screen data. Further algorithm development is warranted.

Unmet psycho-social needs of parents of children who die from cancer.

e24005 Background: Cancer is the leading disease-related cause of death for children in the United States, but there is limited data on the needs of caregivers who have lost a child to cancer, and few evidence-based bereavement interventions exist. Parents whose children die from cancer have increased rates of depression, anxiety, and health problems. Prior studies have shown that bereaved parents desire continued contact with their child’s medical team and to connect with parents who have had similar losses. Methods: This is a cross sectional survey of primary caregivers of pediatric patients who died from cancer and were cared for at a moderate size pediatric oncology program (50 new diagnoses per year) from 2010 to 2020. Participation was solicited by mail in English and Spanish. Research packets contained five surveys: Demographic Survey, The Needs Assessment for Family Caregivers Bereaved to Cancer, Quality of Life Survey (SF-36), Brief Grief Assessment, and Social Support Questionnaire (SSQ-6). Interested subjects also participated in a semi-structured, in-depth qualitative interview. Results: One hundred six potentially eligible families were identified. 27 families consented, 10 were without a known address, and 2 opted out. Twenty research packets and 9 interviews were completed, representing 19% of the population of interest and 23% of the invited population. The sample was diverse in gender, age, income, and education level, but not race. The greatest unmet needs were finding meaning in the death, personal wellness, and social activities. Caregivers reported good physical functioning but poor emotional well-being and fatigue. Complicated grief was most profound in the interference (grief interfering with life) and intrusion (images and thoughts of the child) domains. Quantity of social support correlated with satisfaction with social support (P = 0.02). Bereaved parents with greater unmet needs were found to have poorer quality of life in the following domains: energy/fatigue (P = 0.005), role limitations due to emotional problems (P = 0.01), pain (P = 0.01), and emotional well-being (P = 0.02). Greater unmet needs did not correlate to more complicated grief (P = 0.30) or satisfaction with social support (P = 0.08). Interview themes elicited were inadequate current bereavement services, necessary support for siblings, desired contact with the medical team, and connections to other bereaved caregivers. Conclusions: Findings support the need for implementation of more intensive evidence-based bereavement programs for families of children who died from cancer. The data suggests that interventions targeting emotional well-being and increased social supports, in the form of connections to the medical team and other bereaved families, will be the most efficacious in mitigating poor bereavement-related outcomes.

A Multicomponent Telehealth Intervention to Improve Oncofertility Care Delivery Among Young Cancer Patients: A Pilot Study.

Purpose: Oncofertility care for pediatric, adolescent, and young adult cancer patients remains under-implemented across adult and pediatric oncology settings. We pilot tested an electronic health record (EHR)-enabled multicomponent oncofertility intervention (including screening, referral, and fertility consult) in an adult academic oncology program and systematically assessed intervention fit to pediatric and community oncology programs. Methods: Using surveys (n = 33), audits (n = 143), and interviews (n = 21) guided by implementation science frameworks, we pilot tested the EHR-enabled intervention for oncofertility care in young cancer patients at an adult oncology program and evaluated implementation outcomes. We interviewed health care providers from seven regional oncology and fertility programs about intervention fit to their clinical contexts. Results: We recruited 33 health care providers from an adult oncology setting and 15 health care providers from seven additional oncology and fertility settings. At the adult oncology setting, the intervention was found to be appropriate, acceptable, and feasible and improved the screening of fertility needs (from 30% pre- to 51% post-intervention); yet, some patients did not receive appropriate referrals to fertility consults. Providers across all settings suggested content and context modifications, such as adding options to the intervention or allowing the screening component to pop up at a second visit, to improve and adapt the intervention to better fit their clinical care contexts. Conclusions: We found that the EHR-enabled intervention increased the rate of goal-concordant oncofertility care delivery at an adult oncology program. We also identified facilitators, barriers, and needed adaptations to the intervention required for implementation and scaling-up across diverse oncology settings.

Day-to-Day Decision Making by Adolescents and Young Adults with Cancer.

Background: Adolescents and young adults (AYAs) with cancer must negotiate the transition between childhood and adulthood while dealing with a life-threatening illness. AYA involvement in decision making varies depending on the type of decision and when decisions occur during treatment, and evidence suggests that AYAs want to be involved in decision making. Objective: To explore involvement of AYAs with cancer in day-to-day decisions affected by their cancer and treatment. Methods: This qualitative study used interpretive focused ethnography within the sociologic tradition, informed by symbolic interactionism. Semi-structured interviews and informal participant observation took place at two quaternary pediatric oncology programs. Results: Thirty-one interviews were conducted with 16 AYAs ages 15 to 20 years. Major day to day decision-making categories identified included: (1) mental mindset, (2) self-care practices, (3) self-advocacy, and (4) negotiating relationships. Participants described how they came to grips with their illness early on and decided to fight their cancer. They described decisions they made to protect their health, how they advocated for themselves and decisions they made about relationships with family and friends. Conclusions: Through day-to-day decisions, participants managed the impact of cancer and its treatment on their daily lives. Research should focus on developing and implementing interventions to empower AYAs to participate in day-to-day decisions that will affect how they manage their cancer, its treatment and ultimately their outcomes. Implications for Practice: Healthcare providers can facilitate AYA's participation in day-to-day decision making through encouraging autonomy and self-efficacy by providing support and through effective communication.

Provider and staff crisis well-being associated with trust in leadership and baseline burnout.

The impact of the coronavirus 2019 (COVID-19) pandemic on the emotional health of health care workers continues to be an area of active research. However, few studies have focused on those working in pediatrics and its subspecialties, as well as ancillary and non-patient-facing staff. The purpose of this study was to determine the prevalence and associated predictors of burnout and emotional well-being of providers and staff. An anonymous electronic survey was developed evaluating demographics, pandemic experiences, possible predictor variables, and three main outcomes of burnout, psychological distress, and perceived stress. Pediatric hematology oncology (PHO) chiefs and program directors across the country were invited to participate and disseminate the survey to their programs. A total of 682/1950 (35% of invited) individuals responded to all predictor and outcome variables. Over half reported high levels of burnout and some reported moderate/high levels of distress. Prepandemic burnout and decreased trust in leadership were associated with all three outcomes. Additional predictors included having a child ≤18years at home, hospital role, and worrying about patient care or relationship with their patients. The majority (n=444/682, 65.5%) reported that their institution had made COVID-19-related mental health resources available. However, only 6.5% (n=44/682) reported utilizing these resources. While the majority of PHO providers and staff were resilient during the early stages of the COVID-19 pandemic, many reported high levels of burnout, yet few are utilizing institutional resources. This study has highlighted several actionable areas to help identify and address factors that are wearing down the emotional well-being of providers and staff.

Abstract 636: PROFYLE: The pan-Canadian precision oncology program for children, adolescents and young adults with hard-to-treat cancer

Abstract Background: Over 4300 children, adolescents, and young adults (CAYA) are diagnosed with cancer each year in Canada, 1/3 of whom have refractory/metastatic disease or will relapse. A national collaborative program, PRecision Oncology For Young peopLE (PROFYLE), was created with the goal to develop and implement a pipeline providing access to tumor molecular profiling to identify novel targeted treatment options in a clinically relevant timeframe for CAYA with hard-to-treat cancers. Design: PROFYLE unites 21 institutions, building upon 3 pre-existing regional pediatric precision oncology programs (Personalized Oncogenomics (POG), SickKids Cancer Sequencing (KiCS), and Personalized Targeted Therapy in Refractory or Relapsed Cancer in Childhood (TRICEPS)). PROFYLE nodes (genomics/bioinformatics, proteomics, modeling, biomarkers, data/biobanking, therapeutics, bioethics, policy, AYA) are unified by a shared governance structure. PROFYLE includes genomic and transcriptomic sequencing of paired germline/cancer fresh/frozen samples. Inclusion criteria: ≤29y; treatment at a Canadian center; diagnosis of a hard-to-treat cancer. Profiling results are reviewed by multidisciplinary Molecular Tumor Boards. A report including a results/recommendations summary of actionable findings (therapeutic, diagnostic, prognostic, cancer predisposition), potential targeted therapy options including available clinical trials, clarification of diagnosis, and genetic counseling referral is provided to the treating oncologist. Results: To date, &amp;gt;800 CAYA are enrolled in PROFYLE and POG, KiCS, TRICEPS. Cancer diagnoses: 35% sarcoma, 18% leukemia/lymphoma, 14% CNS tumor, 14% neuroblastoma, 19% other. At study entry, 44% of participants had not relapsed, 39% 1 relapse, 14% 2 relapses, and 3% 3+ relapses. 13% had a cancer-predisposing pathogenic/likely pathogenic germline variant, 39% had ≥1 potentially actionable somatic alteration, and 13% had a therapeutically targetable somatic alteration. The most frequent classes of alterations were RAS/MAPK, immune checkpoint, cell cycle, DNA repair, epigenetic, PI3K/AKT/mTOR, RTK. Of clinicians who reported the utility of results, 78% indicated the findings had the potential to inform a medical decision. Future Directions: We will build on PROFYLE's success by addressing the challenge of real-time availability of target-based therapies through innovative clinical trial strategies incorporating new drugs, off-label use, drug combinations, basket and single patient study designs to enable improved access to therapies for CAYA with actionable molecular targets. We will work on policy-relevant research to facilitate implementation of precision oncology care for CAYA in Canada. We will leverage knowledge developed by PROFYLE thus far by integrating omics, modeling and biomarkers research in the trials being developed. Citation Format: Stephanie A. Grover, Thierry Alcindor, Jason N. Berman, Jennifer A. Chan, Avram E. Denburg, Rebecca J. Deyell, David D. Eisenstat, Conrad V. Fernandez, Paul E. Grundy, Abha Gupta, Cynthia Hawkins, Meredith S. Irwin, Nada Jabado, Steven J. Jones, Michael F. Moran, Daniel A. Morgenstern, Shahrad R. Rassekh, Adam Shlien, Daniel Sinnett, Poul H. Sorensen, Patrick J. Sullivan, Michael D. Taylor, Anita Villani, James A. Whitlock, David Malkin, on behalf of the Terry Fox PROFYLE Consortium. PROFYLE: The pan-Canadian precision oncology program for children, adolescents and young adults with hard-to-treat cancer [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2021; 2021 Apr 10-15 and May 17-21. Philadelphia (PA): AACR; Cancer Res 2021;81(13_Suppl):Abstract nr 636.

Barriers and coping mechanisms to accessing healthcare during the COVID-19 lockdown: a cross-sectional survey among patients with chronic diseases in rural Rwanda

BackgroundLarge scale physical distancing measures and movement restrictions imposed to contain COVID-19, often referred to as ‘lockdowns’, abruptly and ubiquitously restricted access to routine healthcare services. This study describes reported barriers and coping mechanisms to accessing healthcare among chronic care patients during the nationwide COVID-19 lockdown in Rwanda.MethodsThis cross-sectional study was conducted among chronic care patients enrolled in pediatric development, HIV/AIDS, non-communicable diseases, mental health, and oncology programs at 3 rural Rwandan districts. Active patients with an appointment scheduled between March–June 2020 and a phone number recorded in the electronic medical record system were eligible. Data were collected by telephone interviews between 23rd April and 11th May 2020, with proxy reporting by caregivers for children and critically ill-patients. Fisher’s exact tests were used to measure associations. Logistic regression analysis was also used to assess factors associated with reporting at least one barrier to accessing healthcare during the lockdown.ResultsOf 220 patient respondents, 44% reported at least one barrier to accessing healthcare. Barriers included lack of access to emergency care (n = 50; 22.7%), lack of access to medication (n = 44; 20.0%) and skipping clinical appointments (n = 37; 16.8%). Experiencing barriers was associated with the clinical program (p < 0.001), with oncology patients being highly affected (64.5%), and with increasing distance from home to the health facility (p = 0.031). In the adjusted logistic regression model, reporting at least one barrier to accessing healthcare was associated with the patient's clinical program and district of residence. Forty (18.2%) patients identified positive coping mechanisms to ensure continuation of care, such as walking long distances during suspension of public transport (n = 21; 9.6%), contacting clinicians via telephone for guidance or rescheduling appointments (n = 15; 6.8%), and delegating someone else for medication pick-up (n = 6; 2.7%). Of 124 patients who reported no barriers to accessing healthcare, 9% used positive coping mechanisms.ConclusionA large proportion of chronic care patients experienced barriers to accessing healthcare during the COVID-19 lockdown. However, many patients also independently identified positive coping mechanisms to ensure continuation of care - strategies that could be formally adopted by healthcare systems in Rwanda and similar settings to mitigate effects of future lockdowns on patients.

Transition from pediatric to adult aftercare for survivors of pediatric cancer in Newfoundland and Labrador: a qualitative study.

Background:Childhood cancer survivors (CCSs) face increased risks during the period when they leave pediatric care and transition into adult-focused aftercare. We examined the experiences of CCSs entering adult-focused aftercare to gain a better understanding of current transition practices and barriers to transition, and to identify opportunities for improving care.Methods:We conducted a qualitative study using in-person and telephone semi-structured interviews. Childhood cancer survivors who recently transitioned out of pediatric care and health care providers (HCPs) who provide care for CCSs in Newfoundland and Labrador were identified using purposive sampling. Participants were interviewed between July 2017 and March 2019. Data were analyzed using both qualitative descriptive and thematic analysis.Results:We conducted interviews with 5 CCSs and 9 HCPs. All CCSs interviewed reported receiving aftercare through their pediatric oncology program; only 2 reported receiving any form of aftercare in the adult setting. The lack of a structured transition process for CCSs in the province emerged as a theme in this study. Interview participants identified several barriers to transition: the added challenges for survivors in rural areas, changes in the availability of services after the transition to adult-focused aftercare, challenges associated with navigating the adult system, and a lack of education on transitioning into adult aftercare.Interpretation:We found that there was little preparation for the transition of CCSs into adult care, and their aftercare was disrupted. Programs serving CCSs have opportunities to improve care by standardizing and better supporting these transitions, for example through the development of context-appropriate educational resources.

Stepwise Strategic Mitigation Planning in a Pediatric Oncology Center During the COVID-19 Pandemic.

Background: Severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2) first reached the United States in January 2020. Located in New York City (NYC), MSK Kids, at Memorial Sloan Kettering Cancer Center services, is one of the largest pediatric cancer centers in the U.S., caring for children, teenagers, and young adults with cancer, immune deficiencies, and blood disorders. Methods: Implementation for infection mitigation and ongoing care of patients included: (1) the creation of a strategic planning team of physicians, advanced practice providers, nurses, and administrators to develop guidance and workflows, (2) continuous reassessment of patients' needs for hospital services and visit frequency, (3) the use of telemedicine to replace in-person visits, (4) the use of satellite regional centers to manage patients living outside NYC, (5) pre-screening of patients prior to visits for risks and symptoms of coronavirus disease 2019 (COVID-19) infection, (6) day-of-service screening for risks or symptoms of COVID-19 infection, (7) surveillance testing of children and their caregivers, and (8) creation of cohort plans for the management of COVID-19 positive and uninfected patients within the same institution, in both the outpatient and inpatient settings. Results: We describe the timeline for planning mitigation during the first weeks of the pandemic, and detail in a stepwise fashion the rationale and implementation of COVID-19 containment efforts in the context of a large pediatric oncology program. Discussion: Our experience offers a model on which to base strategic planning efforts at other pediatric oncology centers, for continued preparedness to combat the threat posed by SARS-CoV-2 worldwide.

Development of a Pediatric Integrative Oncology Program: Pearls, Barriers, and Future Directions

Children with cancer can experience intense suffering. Currently, despite our best efforts, symptoms associated with both cancer and its treatment result in physical, psychological, and emotional discomfort that can be difficult to manage with traditional Western medicine alone. Developing integrative services within a pediatric hematology-oncology program may help improve cancer-related symptoms by combining different modalities targeting overall health with traditional oncology care. This study details the initial development of a Pediatric Integrative Oncology (PIO) program at St. Jude Children’s Research Hospital, which treats cancer and other catastrophic pediatric diseases. We highlight facilitators and barriers to integration of PIO. In addition, we advocate that PIO clinicians add to the growing literature base by sharing clinical and administrative experiences across institutions to support the long-term goal of developing specific guidelines that focus on using integrative modalities in children with cancer.

Medical marijuana in pediatric oncology: What your patients are thinking.

Medical marijuana in pediatric oncology: What your patients are thinking.