Incidence, Survival, and Mortality Trends of Cancers Diagnosed in Adolescents and Young Adults (15-39 Years): A Population-Based Study in The Netherlands 1990-2016

Abstract

Adolescent and young adult (AYA) cancer patients, aged 15-39 years at primary cancer diagnosis, form a distinct, understudied, and underserved group in cancer care. This study aimed to assess long-term trends in incidence, survival, and mortality of AYA cancer patients within the Netherlands. Data on all malignant AYA tumours diagnosed between 1990-2016 (n = 95,228) were obtained from the Netherlands Cancer Registry. European age-standardised incidence and mortality rates with average annual percentage change (AAPC) statistics and five-year relative survival rates were calculated. The overall cancer incidence increased from 54.6 to 70.3 per 100,000 person-years (AAPC: +1.37%) between 1990-2016, and increased for both sexes individually and for most cancer types. Five-year relative survival overall improved from 73.7% in 1990-1999 to 86.4% in 2010-2016 and improved for both sexes and most cancer types. Survival remained poor (<60%) for rhabdomyosarcoma, lung, stomach, liver, bladder, and pancreatic carcinomas, among others. Mortality rates among male AYAs overall declined from 10.8 to 6.6 (AAPC: -1.64%) and from 14.4 to 10.1 per 100,000 person-years (AAPC: -1.81%) for female AYAs since 1990. Mortality rates remained unchanged for male AYAs aged 20-24 and 25-29 years. In conclusion, over the past three decades, there has been a considerable increase in cancer incidence among AYAs in the Netherlands. Meanwhile, the survival improved and the mortality overall declined. Survival at five-years now well exceeds above 80%, but did not do so for all cancer types.

Keywords: AYA; The Netherlands; adolescents and young adults; cancer epidemiology; cancer trends; incidence; mortality; survival.

Figure 1

Relative frequencies (%) of cancer types according to the adolescent and young adult (AYA) site recode classification scheme by age group and calendar period for (a) male and (b) female AYA cancer patients diagnosed at age 15–39 years in the Netherlands between 2010–2016.

Figure 2

Age-standardised incidence and mortality rates per 100,000 person-years for (a,c) male and (b,d) female adolescents and young adults (AYAs) diagnosed with or passed away due to cancer in the Netherlands between 1990–2016. Rates were standardised using weights from the 1976 European standard population. Note the non-significant average annual percentage change (AAPC) estimates in panel c for male AYA cancer patients aged 20–24 and 25–29 years.

Figure 3

Five-year relative survival outcomes with 95% confidence intervals over time for (a) male and (b) female adolescent and young adult (AYA) cancer patients by age group in the Netherlands between 1990–2016.

Figure 4

Cancer type specific changes (%) in five-year relative survival outcomes between 1990–1999 and 2010–2016 for male and female adolescent and young adult (AYA) cancer patients diagnosed in the Netherlands between 1990–2016. p-values were obtained from a likelihood ratio test comparing a model including the midpoint of the calendar period and a model without calendar period. A p-value <0.05 was considered to be statistically significant (denoted with *).