Background: This study sought to evaluate the current services and delivery models of adolescent and young adult oncology (AYAO)–specific programs at NCI-designated Cancer Centers (NCI-CCs). Patients and Methods: NCI, academic, and community cancer centers were electronically sent surveys from October to December 2020 and administered via REDCap. Results: Survey responses were received from 50 of 64 (78%) NCI-CCs, primarily completed by pediatric oncologists (53%), adult oncologists (11%), and social workers (11%). Half (51%) reported an existing AYAO program, with most (66%) started within the past 5 years. Although most programs combined medical and pediatric oncology (59%), 24% were embedded within pediatrics alone. Most programs saw patients aged 15 (55%) to 39 years (66%) mainly via outpatient clinic consultation (93%). Most centers reported access to a range of medical oncology and supportive services, but dedicated services specifically for adolescent and young adults (AYAs) were available at a much lower extent, such as social work (98% vs 58%) and psychology (95% vs 54%). Although fertility preservation was offered by all programs (100%), only two-thirds of NCI centers (64%) reported providing sexual health services to AYAs. Most NCI-CCs (98%) were affiliated with a research consortium, and a lesser extent (73%) reported collaboration between adult and pediatric researchers. Nearly two-thirds (60%) reported that AYA oncology care was important/very important to their respective institution and reported providing good/excellent care to AYAs with cancer (59%), but to a lesser extent reported good/excellent research (36%), sexual health (23%), and education of staff (21%). Conclusions: Results of this first-ever national survey to assess AYAO programs showed that only half of NCI-CCs report having a dedicated AYAO program, and that areas of improvement include staff education, research, and sexual health services for patients.
Introduction The prevalence of venous thromboembolism (VTE) in patients non-ambulatory from birth has not been well established. Available literature is unclear on the risk of VTE in patients with cerebral palsy (CP), both in the medical and post-surgical settings. Additionally, no large scale, population based studies of VTE rates in patients with severe disabilities have been done. Furthermore, assessing how the risk of VTE evolves with age in this patient population has not been assessed. Therefore, current guidelines regarding VTE prophylaxis do not take a stated position on patients with CP and recommend against thromboprophylaxis in chronically immobilized persons. Our study aims to assess the prevalence of VTE in patients with CP, both ambulatory and non-ambulatory, comparing them to the general population. Methods The Explorys platform provides aggregated patient data from many major integrated health systems incorporating tens of millions of patient lives since 1999. Explorys is an IBM database that draws on de-identified data that resides in a cloud-based, HIPAA-enabled, highly secure platform and houses over 63 million unique patients and allows customizable cohort selection as well as longitudinal patient-level data tracking. Patients were sorted based on coded diagnoses of cerebral palsy (CP), wheelchair dependence or wheelchair bound (WD) as a proxy for non-ambulatory status, and venous thrombosis (VTE). A control cohort representing the general population (GP) was generated using patients with a coded diagnosis for any disease excluding those above. Using these codes, we compared VTE prevalence among 4 primary cohorts: (1) general population with neither CP nor WD, (2) patients with CP but without WD, (3) patients with WD but without CP, and (4) patients with both CP and WD. A secondary analysis stratified patients by age decile and compared VTE prevalence between the four cohorts as well as compared rates after removing those with known risk factors for VTE. We also collected distributions of race, gender, and secondary diagnoses to characterize each cohort. Results We identified 42,566,360 unique patients, of whom 73,040 had CP but no WD, 65,390 had WD but no CP, and 5100 had both CP and WD (table 1). Among patients without WD, patients with a diagnosis of CP had higher prevalence of VTE than those without (figure 1; 9.36% vs 2.78%, RR 3.37, p <0.0001). Among patients with WD, patients with CP had a lower rate of VTE (17.1% vs 24.1%, RR 0.71, p<0.0001) compared to non-CP patients who were WD. When comparing CP WD to ambulatory non-CP we found that patients with WD and CP had a higher rate of VTE (17.1% vs 2.78%, RR 6.11, p <0.0001). This observed relationship was consistent when stratified by age decile (figure 2), as well as in a secondary analysis of patients with a coded inpatient encounter but no diagnosis for malignancy or central venous catheter insertion with VTE prevalence 4.0% in GP, 4.8% CP no WD, 19.5% WD no CP, and 10.5% CP and WD; all relationships significant at p<0.0001. Conclusion This study demonstrates that in non-wheelchair patients, ambulatory patients with CP had a higher rate of VTE compared to those without CP. And although wheelchair bound patients with CP had a higher rate of VTE vs ambulatory non-CP patients, this rate was lower than that observed among patients who are wheelchair dependent for reasons other than cerebral palsy. Our findings suggest that all patients with CP regardless of ambulatory status have a high prevalence of VTE but that in wheelchair bound patients, CP appears to be a protective factor in comparison to those who are wheelchair dependent for reasons other than CP. Both ambulatory and non-ambulatory patients with CP should be considered an at-risk group for VTE when calculating VTE risk scores and should be assessed accordingly when presenting with symptoms suggestive of venous thromboembolism. Finally, our data would suggest that patients who are wheelchair dependent may need to be considered a high-risk group when considering DVT prophylaxis during hospitalization, though further studies are needed to clarify risk in the hospital setting. Disclosures Ahuja: XaTexk Inc.: Consultancy, Patents & Royalties, Research Funding; Rainbow Children's Foundation: Research Funding; Bayer: Consultancy; Biovertiv Sanofi: Consultancy; Genentech: Consultancy.
Introduction Clonal cytopenia of undetermined significance (CCUS) represents a clonal group of cells with the presence of a hematologic malignancy-associated somatic mutation without meeting the morphologic criteria for MDS. CCUS patients have a variable risk of progression to MDS. The WHO requires at least 10% of a cell lineage have dysplastic morphology for the diagnosis of MDS, but CCUS patients have been described with no evidence of dysplasia (CCUS-ND) or with low level dysplasia (CCUS-D). We previously identified CCUS-D as biologically distinct with higher risk MDS mutations. We hypothesized that CCUS-D would be independently associated with the risk of progressive cytopenia over time and thus may have clinical relevance in the setting of CCUS. Methods Cases of CCUS were identified on review of bone marrow biopsies completed for the diagnosis of cytopenia from 8/2016 to 9/2018 with results of a custom 31-gene NGS hotspot panel to detect mutations in the following genes: ASXL1, BRAF, CALR, CBL, CSF3R, DNMT3A, ETV6, EZH2, FLT3, GATA2, IDH1, IDH2, JAK2, JAK3, KIT, KRAS, MPL, MYD88, NPM1, NRAS, PHF6, PTPN11, RUNX1, SETBP1, SF3B1, SRSF2, TET2, TP53, U2AF1, WT1, and ZRSR2. The classification of CCUS-D or CCUS-ND required two or more board-certified hematopathologists to score the degree of morphologic dysplasia on bone marrow aspirates with at least one of the following morphologic criteria: >2%-<10% erythroid precursors with nuclear irregularities, >50% erythroid cells with megaloblastoid changes and/or basophilic stippling, >5%-<10% hypogranular and/or hypolobated granulocytes, or ≥10% megakaryocytes that were small and hypolobated or showed other nuclear abnormalities such as grape-like nuclei. We recorded baseline characteristics including cytogenetics, results of next-generation sequencing, and lab findings and then followed patients with annual blood counts. Statistical differences of baseline characteristics were evaluated by T-test for continuous variables, and Chi-square / Fisher's exact test were used for association between categorical variables. The repeated measures over time for various outcomes (WBC, ANC, hemoglobin, platelet) were visualized using scatter plot supervised with lowess smoother. The effects of dysplasia on various longitudinal outcomes were estimated using linear mixed-effect models. Results We identified 54 CCUS patients on review of 200 marrows completed for undiagnosed cytopenia. Twenty-six patients were identified with CCUS-D, and 28 patients with CCUS-ND. Baseline clinical characteristics including age, gender, race, smoking status, or presence of infection at time of initial diagnosis were similar. Hematology laboratory parameters including White Blood Cell Count (WBC), Absolute Neutrophil Count (ANC), Hemoglobin (Hgb), and Platelet Count (Plts) did not differ. (Table 1). Patients with CCUS-D had an average of 1.62 mutated genes detected per patient with the most common being TET2 (26.19%), SRSF2 (14.29%), and DNMT3A (14.29%). Patients with CCUS-ND had an average of 1.41 mutations per patient with the most common being TET2 (31.57%) and DNMT3A (31.57%). Patients were followed for a median of 32.2 months and a range from 1.0 to 48.8 months. On long term follow up, WBC, ANC, Hgb and plts trended lower in patients with CCUS-D compared to CCUS-ND, but the difference was marginally statistically significant (p = 0.09, 0.16, 0.13, 0.64 respectively). We also evaluated the rate of change in hematology parameters and found no significant difference in change rate of WBC, ANC, and hgb (p = 0.25, 0.13, and 0.28, respectively). There was a significant difference in the change rate of platelet counts between the two groups (p = 0.026). In particular, patients with CCUS-D had decreasing platelet counts at a rate of -0.04119 10E9/L/day and patients with CCUS-ND had increasing platelet counts at a rate of 0.01075 10E9/L/day. Two patients in the CCUS-D cohort progressed to MDS at an average of 938.5 days. One patient with CCUS-ND progressed to Large Granular Lymphocytic Leukemia at 805 days. Conclusions Low level (< 10%) dysplasia in cell lineages in CCUS is associated with a higher rate of decline in platelet counts but was not independently associated with increased risk of progressive neutropenia, leukopenia, or anemia. Longer follow up may be required to further understand the clinical significance of low level dysplasia in CCUS. Figure 1 Figure 1. Disclosures No relevant conflicts of interest to declare.
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