Objectives. Survival rates for pediatric cancer have dramatically increased since the 1970s, and the population of childhood cancer survivors (CCS) exceeds 500,000 in the United States. Cancer during childhood and related treatments lead to long-term health problems, many of which are poorly understood. These problems can be amplified by suboptimal survivorship care. This report provides an overview of the existing evidence and forthcoming research relevant to disparities and barriers for pediatric cancer survivorship care, outlines pending questions, and offers guidance for future research. Data sources. This Technical Brief reviews published peer-reviewed literature, grey literature, and Key Informant interviews to answer five Guiding Questions regarding disparities in the care of pediatric survivors, barriers to cancer survivorship care, proposed strategies, evaluated interventions, and future directions. Review methods. We searched research databases, research registries, and published reviews for ongoing and published studies in CCS to October 2020. We used the authors’ definition of CCS; where not specified, CCS included those diagnosed with any cancer prior to age 21. The grey literature search included relevant professional and nonprofit organizational websites and guideline clearinghouses. Key Informants provided content expertise regarding published and ongoing research, and recommended approaches to fill identified gaps. Results. In total, 110 studies met inclusion criteria. We identified 26 studies that assessed disparities in survivorship care for CCS. Key Informants discussed subgroups of CCS by race or ethnicity, sex, socioeconomic status, and insurance coverage that may experience disparities in survivorship care, and these were supported in the published literature. Key Informants indicated that major barriers to care are providers (e.g., insufficient knowledge), the health system (e.g., availability of services), and payers (e.g., network adequacy); we identified 47 studies that assessed a large range of barriers to survivorship care. Sixteen organizations have outlined strategies to address pediatric survivorship care. Our searches identified only 27 published studies that evaluated interventions to alleviate disparities and reduce barriers to care. These predominantly assessed approaches that targeted patients. We found only eight ongoing studies that evaluated strategies to address disparities and barriers. Conclusions. While research has addressed disparities and barriers to survivorship care for childhood cancer survivors, evidence-based interventions to address these disparities and barriers to care are sparse. Additional research is also needed to examine less frequently studied disparities and barriers and to evaluate ameliorative strategies in order to improve the survivorship care for CCS.
Introduction: Cancer clinical trial accruals have been historically low and are affected by several factors. Multidisciplinary Tumor Board Meetings (MTBM) are conducted regularly and immensely help to devise a comprehensive care plan including discussions about clinical trial availability and eligibility. Objectives: To evaluate whether patient discussion at MTBM was associated with a higher consent rate for clinical trials at a single tertiary care center. Methods: Institutional electronic medical records (EMR) and clinical trials management system (OnCore) were queried to identify all new patient visits in oncology clinics, consents to clinical trials, and MTBM notes between January 1, 2011 and December 31, 2015. The association between MTBM discussion and subsequent clinical trial enrollment within 16 weeks of the new patient visit was evaluated using a χ 2 test. Results: Between January 1, 2011 and December 31, 2015, 11,794 new patients were seen in oncology clinics, and 2,225 patients (18.9%) were discussed at MTBMs. MTBM discussion conferred a higher rate of subsequent clinical trial consent within 16 weeks following the patient's first consultation in an oncology clinic: 4.1% for those who were discussed at a MTBM compared to 2.8% for those not discussed (p < 0.01). Conclusions:This study provides evidence that MTBMs may be effective in identifying patients eligible for available clinical trials by reviewing eligibility criteria during MTBM discussions. We recommend discussion of all new patients in MTBM to improve the quality of care provided to those with cancer and enhanced clinical trial accrual.
Background Cancer survival rates in adolescents and young adults (AYAs) have shown slow improvements in comparison with other age groups, and this may be due to lower participation in clinical trials. Little evidence has been provided regarding how nonmetropolitan residence may influence clinical trial enrollment for AYAs with cancer. This study sought to determine whether AYAs from nonmetropolitan areas have lower rates of clinical trial enrollment than their urban counterparts and to examine factors associated with enrollment variation. Methods Data from the National Cancer Institute’s 2006 and 2013 Surveillance, Epidemiology, and End Results Patterns of Care AYA cohorts were analyzed. Patients with acute lymphoblastic leukemia, Hodgkin lymphoma, non‐Hodgkin lymphoma, and sarcoma were included (n = 3155). Urban influence codes were used to measure the rurality of the county of residence at diagnosis, which was categorized as large metropolitan, small metropolitan, or nonmetropolitan. Logistic regression compared trial participants and nonparticipants while adjusting for patient and provider factors. Results Compared with AYAs from large metropolitan counties, AYAs from small metropolitan (odds ratio [OR], 2.04; 95% confidence interval [CI], 1.57‐2.64) or nonmetropolitan counties (OR, 1.86; 95% CI, 1.23‐2.81) experienced greater trial enrollment. AYAs treated at a hospital with a residency program (OR, 2.27; 95% CI, 1.63‐3.16) or by a pediatric oncologist (OR, 4.02; 95% CI, 3.03‐5.32) were associated with greater enrollment. There was a significant interaction between rurality and hospital size, which had the greatest impact on nonmetropolitan enrollment. Conclusions Clinical trial enrollment was higher among AYAs from nonmetropolitan counties than those from metropolitan counties, predominantly when they were treated at large hospitals.
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