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Background: Symptom burden in adolescents and young adults (AYA) with cancer is poorly characterized but impacts quality of life. Methods: All Ontario, Canada AYA aged 15-29 years at diagnosis between 2010 and 2018 were linked to population-based healthcare databases, including to Edmonton Symptom Assessment System-revised (ESAS) scores, an 11-point scale routinely obtained at the time of cancer-related outpatient visits and collected provincially. Multistate models estimated mean duration of symptom severity states [none (0) vs. mild (1 vs. 2 vs. 3) vs. moderate (4-6) vs. severe (7-10)], trajectories, and subsequent mortality risk. Variables associated with severe symptoms were also determined. Results: In total, 4296 AYA with =1 ESAS score within a year of diagnosis were included (median age 25 years). Prevalent moderate/severe symptoms included fatigue (59% of AYA) and anxiety (44%). Across symptom type, AYA reporting moderate symptoms were likelier to subsequently experience improvement versus worsening. Risk of death within 6 months increased with increasing symptom burden and was highest in AYA with severe dyspnea (9.0%), pain (8.0%), or drowsiness (7.5%). AYA in the poorest urban neighborhoods were more likely to experience severe symptoms than in the wealthiest areas, with twice the odds of reporting severe depression [adjusted odds ratio (OR) 1.95, 95th confidence interval (95% CI) 1.37-2.78], pain (OR: 1.94, 95% CI: 1.39-2.70), and dyspnea (OR: 1.96, 95% CI: 1.27-3.02). Conclusions: AYA with cancer experience substantial symptom burden. Risk of death increased with symptom severity. Interventions targeting cancer fatigue and anxiety, and targeting AYA in lower-income neighborhoods, are likely to improve quality of life in this population. [ABSTRACT FROM AUTHOR]

Purpose: Adolescent and young adult cancer survivors require lifelong healthcare to address the late effects of therapy. We examined the impact of different provider models of long‐term follow‐up (LTFU) care on adherence to recommended surveillance. Methods: We conducted a retrospective cohort study using administrative health databases in Ontario, Canada. Five‐year survivors were identified from IMPACT, a database of patients aged 15–20.9 years at diagnosis of six cancers between 1992 and 2010. We defined three models of LTFU care hierarchically: specialized survivor clinics (SCCs), general cancer clinics (GCCs), and family physician (FP). We assessed adherence to the Children's Oncology Group surveillance guidelines for cardiomyopathy and breast cancer. Multistate models assessed adherence transitions and impacts of LTFU attendance. Results: A total of 1574 survivors were followed for a mean of 9.2 years (range 4.3–13.9 years) from index (5‐year survival). The highest level of LTFU attended in the first 2‐years post‐index was a GCC (47%); only 16.7% attended a SCC. By the end of study, 72% no longer attended any of the models of care and only 2% still attended an SCC. Among 188 survivors requiring breast cancer surveillance, 6.9% were adherent to their first required surveillance testing. Attendance at a SCC in the previous year and higher cumulative FP or GCC visits increased the rate of subsequently becoming adherent. Among 857 survivors requiring cardiomyopathy surveillance, 11% were adherent at study entry. Each subsequent SCC visit led to an 11.3% (95% CI: 1.05–1.18) increase in the rate of becoming adherent. Conclusion: LTFU attendance and surveillance adherence are sub‐optimal. SCC follow‐up is associated with greater adherence, but few survivors receive such care, and this proportion diminished over time. Interventions are needed to improve LTFU attendance and promote surveillance adherence. [ABSTRACT FROM AUTHOR]

Hodgkin lymphoma (HL) is a common adolescent and young adult (AYA) cancer. While outcome disparities between pediatric vs. adult centers [locus of care (LOC)] have been demonstrated in other AYA cancers such as acute lymphoblastic leukemia, they have not been well studied in HL. We therefore compared population‐based treatment patterns and outcomes in AYA HL by LOC. The IMPACT Cohort includes data on all Ontario, Canada AYA (15‐21 years) diagnosed with HL between 1992 and 2012. Linkage to population‐based health administrative data identified late effects. We examined LOC‐based differences in treatment modalities, cumulative doses, event‐free survival (EFS), overall survival (OS), and late effects. Among 954 AYA, 711 (74.5%) received therapy at adult centers. Pediatric center AYA experienced higher rates of radiation therapy but lower cumulative doses of doxorubicin and bleomycin. 10‐year EFS did not differ between pediatric vs. adult cancer vs. community centers (83.8% ± 2.4% vs. 82.8% ± 1.6% vs. 82.7%±3.0%; P =.71); LOC was not significantly associated with either EFS or OS in multivariable analyses. Higher incidences of second malignancies in pediatric center AYA and of cardiovascular events in adult center AYA were observed, but were not significant. In conclusion, while pediatric and adult centers used different treatment strategies, outcomes were equivalent. Differences in treatment exposures are however likely to result in different late‐effect risks. Protocol choice should be guided by individual late‐effect risk. [ABSTRACT FROM AUTHOR]

Background: Retrospective studies have shown adolescents and young adults (AYA) with acute lymphoblastic leukemia (ALL) have superior survival when treated in pediatric versus adult centers (locus of care; LOC). Several adult centers recently adopted pediatric protocols. Whether this has narrowed LOC disparities in real–world settings is unknown. Methods: The IMPACT Cohort is an Ontario population–based cohort that captured demographic, disease and treatment (treatment protocol, chemotherapy doses) data for all 15‐21 year olds diagnosed with ALL 1992‐2011. Cancer outcomes were determined by chart abstraction and linkage to provincial healthcare databases. Treatment protocols were classified as pediatric‐ or adult‐based. We examined predictors of outcome, including LOC, protocol, disease biology, and time period. Results: Of 271 patients, 152 (56%) received therapy at adult centers. 5‐year event‐free survival (EFS ± SE) among AYA at pediatric vs adult centers was 72% ± 4% vs 56% ± 4% (P = 0.03); 5‐year overall survival (OS) was 82% ± 4% vs 64% ± 4% (P < 0.001). After adjustment, OS remained inferior at adult centers (hazard ratio 2.5; 95% confidence interval 1.1‐6.1; P = 0.04). In the most recent period (2006‐2011), 39/59 (66%) AYA treated at adult centers received pediatric protocols. These AYA had outcomes superior to the 20 AYA treated on adult protocols, but inferior to the 44 AYA treated at pediatric centers (EFS 72% ± 5% vs 60% ± 9% vs 81% ± 6%; P = 0.02; OS 77% ± 7% vs 65% ± 11% vs 91% ± 4%; P = 0.004). Induction deaths and treatment–related mortality did not vary by LOC. Conclusions: Survival disparities between AYA with ALL treated in pediatric vs adult centers have persisted over time, partially attributable to incomplete adoption of pediatric protocols by adult centers. Although pediatric protocol use has improved survival, residual disparities remain, perhaps due to other differences in care between adult and pediatric centers.Previous studies demonstrated that pediatric–based acute lymphoblastic leukemia (ALL) protocols were associated with superior adolescent and young adult (AYA) outcomes than cohorts treated with adult–based protocols. Using a population–based AYA database, we found that though pediatric–based protocols were adopted for many AYA in adult centers and that these patients experienced superior outcomes to AYA treated with adult–based protocols, their outcomes were still inferior to AYA treated at pediatric institutions. [ABSTRACT FROM AUTHOR]