Background
Stagnant outcomes for adolescents and young adults (AYAs) 15–39 years of age with cancer are partly attributed to poor enrollment onto clinical trials. Initiatives have focused on ...increasing accrual, but changes at the population‐level are unknown. We examined patterns of clinical trial participation over time in AYA patients with cancer.
Procedure
We utilized medical record data from AYAs in two population‐based National Cancer Institute Patterns of Care Studies identified through the Surveillance, Epidemiology and End Results Program. Among 3135 AYAs diagnosed with non‐Hodgkin lymphoma (NHL), Hodgkin lymphoma, acute lymphoblastic leukemia (ALL), and sarcoma, we used multivariate logistic regression to evaluate patient and provider characteristics associated with clinical trial enrollment. Interaction terms evaluated variation in clinical trial enrollment across patient and provider characteristics by year of diagnosis.
Results
From 2006 to 2012–2013, clinical trial participation increased from 14.8% to 17.9% (P < 0.01). Adjusting for patient and provider characteristics, we found lower clinical trial enrollment among those who were older at diagnosis, diagnosed with NHL vs ALL, treated by adult hematologist/oncologists only (vs pediatric hematologist/oncologists), and of non‐Hispanic Black race/ethnicity (vs non‐Hispanic White) (P < 0.05 for all). Interaction analyses indicate improved clinical trial enrollment from 2006 to 2012–2013 among young adults 25–29 years of age and the uninsured.
Conclusions
Although disparities in enrollment onto clinical trials remain for AYAs with cancer, our study identified increasing overall clinical trial participation over time. Further, we identify promising trends in enrollment uptake among AYAs 25–29 years of age and the uninsured.
Summary
Little is known about the incidence of late effects following non‐Hodgkin lymphoma (NHL) among adolescent and young adult (AYA, 15–39 years) survivors. Using data from the California Cancer ...Registry linked to hospital discharge, we estimated the cumulative incidence of late effects at 10 years among AYAs diagnosed with NHL during 1996–2012, who survived ≥2 years. Cox proportional‐hazards models were used to investigate the influence of sociodemographic and clinical factors on the occurrence of late effects. Of 4392 HIV‐uninfected patients, the highest incident diseases were: endocrine (18·5%), cardiovascular (11·7%), and respiratory (5·0%), followed by secondary primary malignancy (SPM, 2·6%), renal and neurologic (2·2%), liver/pancreatic (2·0%), and avascular necrosis (1·2%). Among the 425 HIV‐infected survivors, incidence was higher for all late effects, especially over threefold increased risk of SPM, compared to HIV‐uninfected patients (8·1% vs. 2·6%). In multivariable models for HIV‐uninfected patients, public or no health insurance (vs. private), residence in lower socioeconomic neighbourhoods (vs. higher), and receipt of a haematopoietic stem cell transplant were associated with a greater risk of most late effects. Our findings of substantial incidence of late effects among NHL AYA survivors emphasise the need for longterm follow‐up and appropriate survivorship care to reduce morbidity and mortality in this vulnerable population.
Venous thromboembolism (VTE), a common complication in cancer patients, occurs more often during the initial phase of treatment. However, information on VTE beyond the first two years after diagnosis ...(‘late VTE’) is scarce, particularly in young survivors.
We examined the risk of, and factors associated with, late VTE among adolescents and young adults (AYA, 15–39 years) diagnosed with cancer (2006–2018) who survived ≥2 years. Data were obtained from the California Cancer Registry linked to hospitalization, emergency department and ambulatory surgery data. We used non-parametric models and Cox proportional hazard regression for analyses.
Among 59,343 survivors, the 10-year cumulative incidence of VTE was 1.93 % (CI 1.80–2.07). The hazard of VTE was higher among those who had active cancer, including progression from lower stages to metastatic disease (Hazard Ratio (HR) = 10.41, 95 % confidence interval (CI): 8.86–12.22), second primary cancer (HR = 2.58, CI:2.01–3.31), or metastatic disease at diagnosis (HR = 2.38, CI:1.84–3.09). The hazard of late VTE was increased among survivors who underwent hematopoietic cell transplantation, those who received radiotherapy, had a VTE history, public insurance (vs private) or non-Hispanic Black/African American race/ethnicity (vs non-Hispanic White). Patients with leukemias, lymphomas, sarcoma, melanoma, colorectal, breast, and cervical cancers had a higher VTE risk than those with thyroid cancer.
VTE risk remained elevated ≥2 years following cancer diagnosis in AYA survivors. Active cancer is a significant risk factor for VTE. Future studies might determine if late VTE should prompt evaluation for recurrence or second malignancy, if not already known.
•Risk of VTE persists after cancer treatment in adolescents and young adults.•Hematopoietic cell transplant, prior VTE, and active cancer are VTE risk factors.•Black race/ethnicity and public insurance are associated with increased VTE risk.•If not already known, late VTE may prompt second cancer or recurrence evaluation.
Despite the marked improvement in the overall survival (OS) for patients diagnosed with Wilms' tumor (WT), the outcomes for those who experience relapse have remained disappointing. We describe the ...outcomes of 253 patients with relapsed WT who received high-dose chemotherapy (HDT) followed by autologous hematopoietic stem cell transplant (HCT) between 1990 and 2013, and were reported to the Center for International Blood and Marrow Transplantation Research. The 5-year estimates for event-free survival (EFS) and OS were 36% (95% confidence interval (CI); 29-43%) and 45% (95 CI; 38-51%), respectively. Relapse of primary disease was the cause of death in 81% of the population. EFS, OS, relapse and transplant-related mortality showed no significant differences when broken down by disease status at transplant, time from diagnosis to transplant, year of transplant or conditioning regimen. Our data suggest that HDT followed by autologous HCT for relapsed WT is well tolerated and outcomes are similar to those reported in the literature. As attempts to conduct a randomized trial comparing maintenance chemotherapy with consolidation versus HDT followed by stem cell transplant have failed, one should balance the potential benefits with the yet unknown long-term risks. As disease recurrence continues to be the most common cause of death, future research should focus on the development of consolidation therapies for those patients achieving complete response to therapy.
Treatment-related toxicities (TRTs) are a potential cause of survival disparities in patients with acute lymphoblastic leukemia (ALL). We aimed to identify the most frequent TRTs associated with ...hospitalizations at a population level in children, adolescents and young adults (AYAs). We used the California Cancer Registry linked to a statewide hospital discharge database to identify children and AYAs with TRTs within 3 years of diagnosis. We assessed the frequency of TRTs, length of stay (LOS), admission rates associated with TRTs and TRTs impact on survival. Febrile neutropenia, hypertension, and thrombocytopenia were the most common TRTs for both children and AYAs. AYAs had longer median LOS compared to children for most toxicities. AYAs at non-specialized cancer centers (SCCs) had higher frequency of admissions associated with TRTs compared to non-SCC. Cardiovascular, respiratory, gastrointestinal, renal, and infectious TRTs were associated with worse survival. This study demonstrates the burden of TRTs in patients with ALL.
Abstract Background Sociodemographic and clinical factors associated with diagnostic delays in pediatric, adolescent, and young adult cancers are poorly understood. Methods Using the Optum Labs Data ...Warehouse's de‐identified claims data for commercial health plan enrollees, we identified children (0–14 years) and adolescents/young adults (AYAs) (15–39 years) diagnosed with one of 10 common cancers from 2001 to 2017, who were continuously enrolled for 6 months preceding diagnosis. Time to diagnosis was calculated as days between first medical encounter with possible cancer symptoms and cancer diagnosis date. Median times from first symptom to diagnosis were compared using Wilcoxon rank sum test. Multivariable unconditional logistic regression identified sociodemographic factors associated with longer time (>3 months) to cancer diagnosis (from symptom onset). Results Of 47,296 patients, 87% presented prior to diagnosis with symptoms. Patients with central nervous system (CNS) tumors were most likely to present with symptoms (93%), whereas patients with cervical cancer were least likely (70%). Symptoms varied by malignancy. Of patients with symptoms, thyroid (105 days range: 50–154) and cervical (104 days range: 41–151) cancer had the longest median time to diagnosis. Females and patients at either end of the age spectrum were more likely to experience diagnosis delays of more than 3 months. Conclusion In a commercially insured population, time to diagnosis varies by cancer type, age, and sex. Further work is needed to understand the patient, provider, and health system‐level factors contributing to time from symptom onset to diagnosis, specifically in the very young children and the young adult patient population going forward.
Purpose
Few population-based studies have focused on cardiovascular disease (CVD) risk in adolescent and young adult (AYA; 15–39 years) cancer survivors and none have considered whether CVD risk ...differs by sociodemographic factors.
Methods
Analyses focused on 79,176 AYA patients diagnosed with 14 first primary cancers in 1996–2012 and surviving > 2 years after diagnosis with follow-up through 2014. Data were obtained from the California Cancer Registry and State hospital discharge data. CVD included coronary artery disease, heart failure, and stroke. The cumulative incidence of developing CVD accounted for the competing risk of death. Multivariable Cox proportional hazards regression evaluated factors associated with CVD and the impact of CVD on mortality.
Results
Overall, 2249 (2.8%) patients developed CVD. Survivors of central nervous system cancer (7.3%), acute lymphoid leukemia (6.9%), acute myeloid leukemia (6.8%), and non-Hodgkin lymphoma (4.1%) had the highest 10-year CVD incidence. In multivariable models, African-Americans (hazard ratio (HR) = 1.55, 95% confidence interval (CI) = 1.33–1.81; versus non-Hispanic Whites), those with public/no health insurance (HR = 1.78, 95% CI = 1.61–1.96; versus private) and those who resided in lower socioeconomic status neighborhoods had a higher CVD risk. These sociodemographic differences in CVD incidence were apparent across most cancer sites. The risk of death was increased by eightfold or higher among AYAs who developed CVD.
Conclusion
While cancer therapies are known to increase the risk of CVD, this study additionally shows that CVD risk varies by sociodemographic factors.
Implications for cancer survivors
The identification and mitigation of CVD risk factors in these subgroups may improve long-term patient outcomes.
Abstract Purpose Bladder cancer is a common malignancy often diagnosed in older adults. Previous studies have reported racial/ethnic disparities in bladder cancer survival outcomes, but have not ...focused on younger patients. We sought to identify whether factors influencing cause-specific survival in adolescents and young adults (ages 15-39) differed from older adults, and to define prognostic factors specifically in adolescents and young adults using the California Cancer Registry. Materials and Methods Patients diagnosed with bladder cancer between 1988 through 2012 were included. The primary outcome measure was cause specific survival. A multivariable Cox proportional hazards regression model was used to evaluate predictors of cause-specific survival in patients of all ages and in adolescents/young adults. Interactions of age and other variables between younger and older adult patients were assessed. Results Of 104,974 bladder cancer patients, we identified 1,688 adolescent and young adult patients (1.6%). When compared to older patients, these patients had a 58% reduced risk of bladder cancer death (Hazard Ratio 0.42; p<0.001). Significant age interactions were identified involving race/ethnicity and histology. Among AYAs, non-Hispanic African Americans with low socioeconomic status had poor cause- specific (Hazard Ratio 7.1, p<0.001) and overall (Hazard Ratio 5.02, p<0.001) survival. Conclusions Racial/ethnic and socioeconomic disparities exist in adolescent and young adult patients with bladder cancer in California. Further studies are warranted to identify the underlying causes in order to overcome these disparities.
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