Child & Adolescent Health Service

To investigate the feasibility of implementing recommendations of the consensus statement for the Prevention and Management of Respiratory Disease in children with severe cerebral palsy (CP) via RESPiratory hospital Admissions in children with cerebral palsy: a feasibility randomized Controlled Trial (RESP-ACT).

Twenty-two children with CP aged 0-12 years at risk of respiratory disease and receiving care through Perth Children's Hospital in Western Australia were randomized into parallel groups. The control group (n = 10) continued with their usual teams, while the intervention group (n = 12) received a comprehensive assessment followed by individualized investigations and appointments as needed. The primary outcomes include implementation, acceptability, practicality, and measuring efficacy. During the following year, with the help of a blind assessor, caregivers reported their children's health service use on a fortnightly basis. Caregivers and treating clinicians were interviewed at the end of the trial.

Complete data were obtained from 73% of participants at 1 year. They completed 89% of the fortnightly surveys. Hospital service data were assessed for all. The 9 intervention participants interviewed at the end of the trial were satisfied or very satisfied with the service, and all caregivers and clinicians agreed or strongly agreed that such a service should be established. Their practical concerns included managing time, preference for home-based interventions and adequate staffing.

The service is feasible to implement but requires close monitoring. This trial provides data on which to base a larger randomized control trial.

Australian New Zealand Clinical Trials Registry-Registration number 12620000114943.

Recent international guidelines in child, adolescent, and young adult (CAYA) oncofertility uniformly recommend fertility discussion before cancer treatment, and individualised decision-making for fertility preservation procedures. Yet significant disparities remain across the globe. Various aspects of oncofertility care are in different stages of translation and the boundaries between experimental, innovative and established techniques are not always clear to patients, clinicians and policymakers. This poses barriers for implementation of high-quality care and for the allocation of resources required. International and national guidelines play a key role in promoting equitable care. In 2019, members of the Australian New Zealand Consortium in CAYA Oncofertility (ANZCO) called for national guidelines to standardise care and improve connectedness amongst Australian New Zealand Haematology Oncology Group (ANZCHOG) centres. A clearer understanding of the similarities and differences amongst key guidelines was deemed useful for closing knowledge gaps in the local context and identifying the priorities of key stakeholders with respect to guideline development. This paper provides an overview of CAYA oncofertility guidance from six peak bodies from four continents (Australia, Europe, North America, Asia). A review of recommendations and levels of evidence followed by a Delphi consensus of ANZCO members to develop priority questions is described. ANZCHOG guidelines tailored to the local CAYA context were deemed a high priority, in order to provide a common purpose, direction and governance for providers of paediatric care.