Table 1.
Special cancer care issues in the AYA (age 15-39 years) cancer population
| Issue | Uniqueness |
|---|---|
| Epidemiology | A unique spectrum of cancer types, with both paediatric- and adult-type tumours (need for multidisciplinary competencies with both paediatric and adult oncologists). Most common malignancies (>90% of cases) are leukaemias, lymphomas, sarcomas, melanoma, breast cancer, testicular cancer, colorectal cancer, thyroid cancer and brain tumours. |
| Biology | For many histotypes, tumour genomics, biology and clinical behaviour may differ in AYA compared with children and older adults. Age-specific molecular features are poorly understood for most AYA cancers. The biology of the host may also differ according to age, with distinct pharmacokinetics and potential impact on therapy efficacy and toxicity profiles. Clinical management cannot simplistically be a children's or adult's standard of care approach to AYA. |
| Hereditary cancer issues | The percentage of AYA with cancer who carry pathogenic variants in genes that predispose to cancer is significant. Counselling and genetic testing is essential for cancer prevention of both the patient and their family. |
| Early diagnosis and awareness | Insufficient awareness (among the general population and scientific community) that cancer may occur in this age group; complex symptom appraisal process and pathway to diagnosis, with risks of long and complex diagnostic pathways and/or difficult access to specialised care. |
| Accrual to clinical trials | Internationally-recognised limited participation in clinical research (reported rate of entering clinical trials ranges from 5% to 34% in published series). |
| Survival rates | Only modest survival gains compared with other age groups. For some tumour types, survival in AYA is poorer than in children with the same disease. |
| Fertility | Impaired reproductive function and possible infertility are major concerns for survivors of AYA cancers. Need for age-specific counselling and fertility preservation before the initiation of any cancer treatment. |
| Psychosocial care | Complex (and often unmet) psychological needs:
|
| Survivorship and transition | Multiple medical, psychosocial and behavioural late effects. Specific transitions from cancer patients to cancer survivors (and to independent adulthood); transitions in medical management. Comprehensive assessment for patients' needs and hospital and community support (rehabilitation programmes, screening physical and psychosocial late effects and support services, occupational and financial support services, individual tailored survivorship care plan). |
| Holistic approach | Need for multidisciplinary care by a team that focuses on AYA-specific issues and concerns (e.g. age-specific supportive care, fertility counselling, appropriate psychological support, education and career development, body image, sexuality and relationships, and alcohol/substance abuse). Need for special staff training and continuous education. |
| Environment | Referral to age-appropriate clinical environments with dedicated facilities and programmes, tailored to their unique developmental needs is essential. |
| End-of-life care | Challenging aspects of palliative and end-of-life care, death and bereavement; difficult adjustment to short life expectancy in this age group, difficult acceptance of treatments of non-curative intent. Early referral to palliative care services pathway, coordination between hospital and community of the decision-making process, are highly recommended. |
| Advocacy, patient and public involvement | Young patients are eloquent advocates for the services they value; need to actively listen to the patient's voice; importance of partnership with patient advocates and networking with health care policy and research groups. |
AYA, adolescents and young adults.