Background The Adolescent and Young Adult Hospice (AYAH) opened in Manly, NSW in February 2023 and is the first of its kind in Australia with the purpose of caring for adolescents and young adults (16–30 years old) from NSW and ACT requiring admission for emergency or planned respite, step down from an acute hospital, complex symptom management, end of life care and post death care.

Given the uniqueness of this patient population and the facility, data is collected on all patients admitted to the AYAH in order to help improve the AYAH service and to guide future developments of similar facilities.

Method Data was gathered looking at:

• Demographics.

• Diagnosis.

• Disease modifying treatments.

• Palliative Care Outcomes Collaboration data.

• Goals of care.

• Airway, breathing, gastrointestinal, seizures, neurological status, motor, bladder, and bowel care needs.

• Seizures, agitation, hypothalamic instability, and dystonia plans.

• An estimate of global nursing hours per day for each patient formed by consensus of two senior nurses.

• Specific mental health diagnoses.

Results As of mid-May 2024, there have been 145 admissions to the AYAH for 45 different patients with an average length of stay of 9 days. Of these admissions, 4/145 were in the terminal phase with 2/4 admissions for complex symptom management and 2/4 for end-of-life care. 29/145 admissions were in the unstable or deteriorating phase with 8/29 admissions for elective respite, 16/29 for complex symptom management, 2/29 for end-of-life care, 1/29 for emergency respite and 2/29 for step down from an acute hospital.The remaining 112 admissions were classed as stable with 5/112 admissions for emergency respite, 102/112 for elective respite, 3/112 for step down from an acute hospital and 2/112 for complex symptom management.14/145 admissions were for patients with a primary malignancy diagnosis with 4/14 for end-of-life care.11/145 admissions were for patients with childhood dementia, 31/145 had a primary muscular pathology, 42/145 had a neurodegenerative condition, and 44/145 had a neurostatic condition.Goals of care were modified in 28/145 admissions.

The estimated average and median hours of direct nursing care per patient was 8 and varied between 4 and 18 hours. Care needs could be very high even for stable patients, with 78/145 patients requiring gastrostomy/jejunostomy feeding, 8/145 requiring home parenteral nutrition, 40/145 having seizures on at least most days, 91/145 being incontinent of urine, and 12/145 requiring recurrent intermittent urinary catheterisation. 60/145 patients had seizure plans, 13/145 had dystonia and agitation plans and 6/145 patients had hypothalamic instability plans. 55/145 admissions had an underlying mental health diagnosis.

Discussion Many patients admitted to the AYAH had a neurodegenerative or neurostatic condition with significant admissions for elective respite. 7 patients have died, all from cancer. This review highlighted the importance and availability of clinical psychology and psychiatry support given that 38% of our admissions had a mental health diagnosis. Nursing requirements between patients varied widely and could be very intensive. This information may be useful to those looking at setting up similar services in the future.