Poster Presentation 2025 Joint Meeting of the COSA ASM and IPOS Congress

Modifying the Youth Cancer Service model of care for neurodiverse adolescent and young adults: A patient centered approach. (126174)

Jessica Elliott 1 2 , Alison Baker 1 , Angela Cao 1 , Joanna Fardell 1 3 , Tora Sibbald 1
  1. Western Sydney Youth Cancer Service, Westmead Hospital, Westmead, NSW, Australia
  2. Westmead Hospital Social Work Department , Sydney, NSW
  3. Discipline of pediatrics, school of clinical medicine, UNSW medicine and health, Sydney, NSW, Australia

Background/Rationale

Adolescent and Young Adults (AYA) encounter distinct challenges compared to other age groups due to developmental stage, psychosocial needs, and the complex interplay of medical, emotional, and social factors. AYAs face further difficulties when neurodivergent, which adds a further layer of complexity to their medical and psychosocial care. We aimed to describe the process and learnings from working alongside neurodiverse patients and their families at the Western Sydney Youth Cancer Service (YCS).

Methods

We conducted a case review of AYAs with neurodiversity (Autism, ADHD) treated between 2023-2024. We collected qualitative information about communication preferences and best ways to support treatment decision making with the AYA and their family.

Impact on Practice

Through case reviews, the Western Sydney YCS recognised that there are different difficulties faced when treating this specific population. Identified challenges neurodivergent AYAs faced during treatment included: treatment nonadherence; navigating consent for treatment due to patients being at a consenting age but not having insight or decision-making capacity; and difficulty adapting to long hospital admissions leading to challenges for staff. Therefore, using clinical experience and integrating a family informed approach we adapted the YCS model of care in the following ways: i) adapting our practice with the patient to ensure they have a clear understanding of their medical care and outcomes, and ii) identifying the best means of communication and sharing this with staff.


Discussion

Working alongside caregivers as well as the patient was emphasised across all cases to better understand the AYA and their unique needs. We adapted the existing model of AYA care to better incorporate caregivers as active members of the unit of care. This allowed a targeted approach to communication and care provision for each individual, and therefore, were able to navigate the challenges associated with treatment while minimising distress for the AYA.