Studies investigating reasons for this are limited but causes appear to be multifactorial.
Host factors such as developmental stage, compliance, and tolerance to therapy; provider factors such as lack of awareness of cancer in AYA and referral patterns; differences in disease biology and treatment strategies; low accrual onto clinical trials; and lack of psychosocial support and education programs for AYA all likely play a role.
Recommendations for change from a recent international workshop include education of physicians and patients concerning AYA cancer, improved cooperation between pediatric and adult centers, age-appropriate psychosocial support services, programs to help AYA with issues relevant to them, dedicated AYA hospital space, improved accrual to clinical trials, the use of technology to educate patients and enhance communication between patients and the health care team, and ensuring that resident and fellowship training programs provide adequate education in AYA oncology.
The longer term goal is to develop AYA oncology into a distinct subspecialist discipline within oncology.
The ideal model of care would incorporate medical care, psychosocial support services, and a physical environment that are age-appropriate. When this is not feasible, the development of "virtual units" connecting patients to the health care team or a combination of physical and virtual models are alternative options.
The assessment of outcome measures is necessary to determine whether the interventions implemented result in improved survival and better quality of life, and are cost-effective.