Introduction
Survival rates for childhood cancer have improved markedly over the last few decades with 5-year overall survival of approximately 80% [1]. However, there has been increasing concern about outcomes for adolescent and young adult (AYA) patients. The age range that defines AYA is variable but includes those aged 15–29 years [2], [3], [4]. Bleyer has emphasized that special attention to those aged 15–19 years is warranted because, in contrast to younger patients, incremental survival in this age range is poor and similar to patients aged 20–29 years [5].
We focused on acute lymphoblastic leukemia (ALL) as there is particular controversy around outcomes in the 15–19 year age group by site of care. More specifically, some [6], [7], [8], [9], [10] but not all [11] studies have reported that outcomes are better when ALL AYA patients are treated at pediatric versus adult centers. These reports tended to explain improved survival at pediatric centers based upon more aggressive treatment protocols. However, even in those treated at pediatric sites, survival was relatively poor compared with younger children [6], [7], [8], [9], [10]. Most of the studies that have evaluated outcomes of AYA ALL patients were conducted in the United States (US) or Europe [6], [7], [8], [9], [10], [11]. Whether other developed nations have different experiences is not clear.
In attempting to explain worse outcomes in AYA patients, hypotheses have included differences in treatment approaches and ability to obtain insurance and prescription drug coverage, at least in the US [12]. Little is known about whether changes in these factors over time have led to improvements in survival. Given the issues related to access to healthcare, we theorized that different patterns may be observed in the US versus a similarly developed country with universal health care such as Canada.
Consequently, the objective was to compare improvement in survival from 1986 to 2009 for ALL patients aged 1–14, 15–19 and 20–29 years at diagnosis in Ontario and the US.
Section snippets
Materials and methods
This was a population-based analysis using administrative data from Cancer Care Ontario's Ontario Cancer Registry (OCR) and the National Cancer Institute's Surveillance Epidemiology and End Results (SEER) database. Institutional review board approval was obtained from The Hospital for Sick Children and there was no requirement for informed consent.
Results
There were 2470 patients aged 1–29 years with ALL in the OCR and 13,129 patients in SEER (Table 1). Patients aged 20–29 years comprised 9.6% of the OCR cohort and 11.1% of the SEER cohort. In both, males were significantly more common than females and income quintile (OCR) and ethnicity (SEER) were unevenly distributed by age group.
Table 2 demonstrates the unadjusted Cox proportional hazard regression analyses for different covariates by age group. Survival was incrementally worse with
Discussion
In our population-based analysis of patients aged 1–29 years with ALL in Ontario, Canada and the US, we observed that survival has improved over time for patients aged 1–14 and 15–19 years in both settings. However, we observed a different survival pattern for adults aged 20–29 years with ALL. In Ontario, survival has improved by about 30% over 24 years, whereas there has been no change in survival in similarly aged US patients.
Our finding that survival has improved in the 15–19 year age group
Role of the funding source
This project had no financial or material support for the work. LS is supported by a New Investigator grant from the Canadian Institutes of Health Research [grant number 84392]. SMHA is a Research Scientist of the Canadian Cancer Society.
Conflict of interest statement
The authors have no conflicts of interest to declare.
Acknowledgments
We acknowledge support from POGO and CCO to conduct this analysis and Ms. Marie-Chantal Ethier and Ms. Tanya Hesser for their administrative support.
Contributions. All authors have contributed equally to the conception and design of the study, acquisition of data, analysis and interpretation of data, as well as drafting and critically revising the intellectual content contained within. All authors have approved the final version of the manuscript being submitted.
Patient reported outcome measure domains and tools used among adolescents and young adults with cancer: A scoping review
2023, Critical Reviews in Oncology/Hematology
Citation Excerpt :
This group, aged 15–39 (Janssen et al., 2021), already faces challenges including balancing education and/or work, financial worries and relationship concerns such as starting or managing a young family (Janssen et al., 2021). A cancer diagnosis during this time adds further risks and concerns related to mental and physical health consequences (Gupta, 2019; Baker and Syrjala, 2018; Lewis et al., 2014; Bright et al., 2019; Kaul et al., 2016; Pole et al., 2013). AYA cancer patients experience significant and broad symptoms.
Adolescent and young adult (AYA) cancer patients and survivors are growing and face with distinct issues from paediatric and older cancer survivors. Hence it is important the issues they encounter are measured using appropriate Patient Reported Outcome Measures (PROMs). We searched PubMed, EMBASE, CINAHL, and PsycINFO for articles including: (1) AYAs (ages 15–39), (2) Malignant neoplasms, and (3) PROMs. This resulted in 3566 unique articles, 523 were included for full text review, of which 175 were included. These studies included 203 distinct tools to measure PROMs across 31 domains. Physical function was most frequently measured domain, followed by social, emotional and mental health. The most commonly used tools were the EORTC QLQ-C30, HADS and SF-36. PROMs used in AYA cancer patients is a complex topic, this comprehensive review serves as a useful reference for researchers, clinicians and health services who want to better understand, and improve, outcomes among their patients.
Important factors improving outcome of young adults with acute lymphoblastic leukemia (ALL)
2021, Best Practice and Research: Clinical Haematology
Citation Excerpt :
In the U.S., the 20–29 year age group has had little to no improvement in 5-year survival, at least as of 2009 (Fig. 7 red data). In the Canadian Province of Ontario, however, where the Dana Farber Cancer institute (DFCI) pediatric regimen was applied, the improvement is obvious (Fig. 8) [8]. In terms of pediatric ALL treatment regimen approaches contributing clinical trials in AYAs, the best example is CALGB 10403: A pediatric regimen for older adolescents and young adults with ALL [9].
Four categories of important factors improving outcome of young adults and older adolescents with acute lymphoblastic leukemia (ALL) are biologic type, clinical trials, pediatric vs. adult treatment regimen, and psychosocial challenges. Overall, the outcome of ALL in the age group has improved and beginning to catch up with that in children, as exemplified by CALGB 10403, a pediatric treatment regimen. Each is dependent for optimum development, however, on progress in the others. Without adequate psychosocial support and improvement, progress in clinical trials, translational research, and pediatric regimen application is impaired. Without clinical trials, advances in translational research, optimal pediatric regimen application and adequate psychosocial research are restricted. Overall, we have improved the outcome and outlook of ALL in AYAs, as exemplified by CALGB 10403, but we and our current and future patients still have a long way to go.
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