A new report centred on adolescents and young adults with cancer reveals important gaps in care exist for cancer patients between the ages of 15 to 39. Findings from a new report released by the Canadian Partnership Against Cancer show the cancer experience is particularly challenging for those who are already facing a number of age-related changes.

Despite their distinct challenges, young cancer patients and survivors are studied much less than other patient subsets in Canada and internationally. Findings from the report confirm they are substantially underrepresented in cancer research, resulting in gaps in knowledge.

While total investment in Canadian cancer research has increased overtime, the proportion of funding allocated to adolescent and young adult-specific research has changed little from 2005 to 2013.

Evidence detailed in the report shows that facing cancer at the cusp of adulthood presents many obstacles unique to this age group, including the financial impacts of cancer, disconnection from peers, loss of independence and interrupted education and career.

The report also identified loss of fertility as a major source of distress for adolescent and young adult cancer patients – many of whom receive therapies toxic to the ovaries and testes, leading to problems with reproductive health. The news of possible infertility paired with lack of emotional support can have a damaging impact on psychosocial health.

“The cancer diagnosis was easier to accept than I could have hoped.…but the pain I felt when hearing that treatment would leave me infertile is impossible to describe,” said Bronwen Garand-Sheridan, cancer survivor.

While preserving reproductive capacity is a primary concern for men and women in this age group, the majority of patients do not consult with fertility professionals prior to treatment.  Provision of services is often limited by the number of specialized in-vitro fertilization (IVF) clinics in Canada. Looking at national system performance data, the report examines the burden fertility clinics would experience if all eligible patients in this age range were referred for fertility counselling.

Data are not available on how well-informed this age group are on fertility issues, or how often they are referred to a fertility specialist.   Absence of evidence and incomplete data on young adults with cancer warrants further research and reflection into ‘oncofertility’ – a growing field of study that explores the reproductive future of cancer survivors.

Adolescents and Young Adults with Cancer: A System Performance Report found many age-specific challenges are not adequately met for patients who fall between pediatric and adult cancer systems, placing them at risk for suboptimal care.
Along with the new report, a pan-Canadian AYA National Network is being established with representation from stakeholders across the country.  Watch the video below featuring Dr. Paul Grundy, chair of the AYA National Network and Expert Lead of Pediatric, AYA Oncology at the Partnership, to learn more.

While efforts to study their unique medical and psychosocial needs are ongoing, the report indicates specialized and tailored responses from the cancer system can help close gaps in care.

This represents the first time that national system performance data have been reported on the full breadth of the cancer continuum in adolescents and young adults – from diagnosis and treatment to long-term survivorship, and where needed, palliative and end-of-life care. The data presented is the first step towards piecing together a more comprehensive picture of the cancer experience for adolescent and young adult cancer patients in Canada.