Table 2.

Frequently held perspectives on the approach to AYA with cancer: similarities (versus older adult and paediatric care), areas where consensus is still needed and potential actions to make progress

Issue	Similarities	Different perspectives	Actions
Environments where care and treatment are delivered	Requires age-appropriate environments and programmes; to promote normality.	Which model of care is best for AYA? Is it a family-focused or an individual-focused? Should AYA cancer care be delivered near the patient's home, in a local hospital or in a regional referral centre?	•Train all health care professionals who work with AYA to move between a family-focused and an individual-focused approach, as required. •Put models of care in place that allow elements of care in each available local setting.
Multidisciplinary care	Complex age-specific psychological, financial and social needs. Challenging behaviours (e.g. smoking, substance use and sexual health). Distinct late sequelae. Fertility preservation and age-specific counselling. Transitions between services. Distinct end-of-life care needs.	‘An MDT’ has variable definitions. Do we always include wider care services (e.g. psychologist, social worker, learning mentor) in our core MDT for all AYA? Do we proactively explore the cancer's impact on education, wider life and family for all AYA over time, or is it sufficient to react to problems that become apparent? Do we expect to transition patients to other age-appropriate services as a young person ages, e.g. late effects services, which screen for sequelae?	•Define the AYA MDT to include the wide spectrum of disease-specific MDTs involved. •Work with other professional groups and societies beyond SIOPE and ESMO—nursing, haematology, palliative care, social workers, etc.—to define patient assessments and roles. •Train all professionals who work with AYA to manage challenging behaviours constructively. •Develop proactive systems to manage transitions between services.
Epidemiology	Rarity; unique spectrum of cancer types and unique biology within cancer types.	What is the right and fair amount of health service resources, e.g. staff/patient ratio required to assess and treat AYA with cancer compared with children or older adults?	•Work jointly between adult and paediatric services to cooperate over AYA care and sometimes pool appropriate resources to improve AYA outcomes. •Train leaders in AYA oncology to be effective in justifying and requesting additional resources for AYA services.
Pathways to care	Insufficient awareness among the general population and many health care professionals. Specific symptom interpretations and use of medical services. Complex and prolonged pathway to diagnosis and treatment.	How much of the AYA cancer pathway should be led by age-appropriate experts and how much led by services who have their main expertise in much younger or much older people?	•Study the features of AYA routes to diagnosis and treatment. •Undertake rigorous health services research to test ways to improve. •Create pathways for investigating AYA with symptoms that are responsive to the specific ways AYA describe their symptoms and use health services.
PPIE in health care	Important that young people are given a ‘voice and a choice’, as this helps to make the services and research right for them. AYA patients can be the best advocates for AYA services, particularly to some audiences (e.g. primary care).	Should patient engagement activities be during the usual working day or at times that can accommodate people who are in work or education?	•Structure PPIE to support all AYA services, flexibly. •Be welcoming and specific to young people so that they feel able to contribute. •AYA services should support AYA to become advocates for these services.
Research and trials	It is essential to accrue AYA into clinical trials and research studies.	How many AYA diagnosed with cancer should we aim to accrue into clinical trials? Is the 5%-10% seen in older adults enough to make progress or is the ≥70% seen in childhood cancer necessary to make progress? Can some aspects of clinical trial care be delivered in hospitals with less accreditation in place and still contribute data to a clinical trial, if this reduces pressure on the patient?	•Develop scientifically based aspirations to accrue AYA into clinical trials in the numbers that can improve outcomes, with systems that can deliver those aspirations. •Train researchers, working with clinical teams, to improve recruitment of AYA into clinical trials by addressing the specific issues for AYA.
Pharmacology	Distinct pharmacology compared with a child or older person with cancer. During the AYA years, the physiology changes quickly, e.g. under hormonal drivers.	What should the eligible age range be for each specific clinical trial? Should it be the age range of patients that the investigators typically treat (e.g. older adults or children) or the age range of the patients with that disease?	•Develop accurate measures of physiology that relate to the efficacy and toxicity of experimental cancer medicines that can be assayed regularly in AYA to decide scientifically how to include this population in a clinical trial.
Education and training	There are specific challenges in the communication of diagnosis and prognosis, maintaining compliance and treatment adherence for AYA with cancer.	Once someone is an adult by law, what level of flexibility in health care services should be in place to enable them to adhere to cancer treatment?	•Ascertain, in curricula for accreditation, the specific skills required for professionals working with AYA and for communicating with AYA. •Provide specific training and assess competency for those working with AYA in specific measures that can promote AYA adherence.

AYA, adolescents and young adults; ESMO, European Society for Medical Oncology; MDT, multidisciplinary team; PPIE, Patient and Public Involvement and Engagement; SIOPE, European Society for Paediatric Oncology.