This project received grant funding from the Australian Government Department of Health, Disability and Ageing.

1. Introduction

In 2023, Palliative Care Australia (PCA) and Paediatric Palliative Care Australia & New Zealand (PaPCANZ) received funding from the Australian Government under the National Palliative Care Projects for a new project – Shaping the Future of Paediatric Palliative Care. One of four key actions is to develop and implement Paediatric Palliative Care (PPC) Clinical Guidelines to support best practice, enable a consistent approach and accessible information.

The New Zealand Child & Youth Clinical Network (NZCYCN) Paediatric Palliative Care Clinical Guidelines are stand-alone PPC Clinical Guidelines in 2015, followed by review and update of these in 2019 with re-publication in 2022.

2. Setup Phase

2.1 Guidelines Aim

To improve quality of life for children and their families by supporting guidance to clinical practice for health care professionals.

2.2 Project Objective

To review and adapt three of the topic-by-topic guidelines developed by NZCYCN for Australian practice.

2.3 Project Approach

The PaPCANZ Executive considered that the NZCYCN clinical guidelines (guidelines) could be adapted for use in Australia and this project gave scope for a consumer co-design, clinician expertise and academic rigor three-pronged approach (Figure 1). A memorandum of understanding was established with NZCYCN and PCA to support the integrity of content and consistency, outline the process for update of the guidelines and agree on processes to share resources into the future.

Figure 1; Clinical Guideline Approach

The clinical guideline project was conducted over 18 months using the ADAPTE methodology instrument (Figure 2) to guide the overall process across the phases of 1. Setup, 2. Adaptation and 3. Finalisation.

Figure 2. ADAPTE Process

The ADAPTE Collaboration (2009). The ADAPTE Process: Resource Toolkit for Guideline Adaptation. Version 2.0. Available from: http://www.g-i-n.net

The three guidelines selected to adapt were approved by the PaPCANZ Executive committee based on the expert opinion that these represent significantly difficult and distressing symptoms for the family and the health care professional;

• Agitation-management in the palliative patient
• Breathlessness-management in the palliative patient
• Sharing significant news about end of life

Consumer engagement and commitment to the principles of codesign is a feature of this project. Consumer partnerships were sought through an expression of interest process with a description of the aim and context of the project circulated to provider networks. Those who lodged interest then were invited to individual meetings held with the PCA Project team to work with individuals on their exploration of interests and the best roles of participation for them.

Ethics approval was sought and approved by the Bellberry Human Research Ethics Committee for the consumer participation across this project in workshops, advisory group, working groups and review processes.

A Senior Clinical Project Officer (Nurse Practitioner PPC) was employed to facilitate the development, and a structure of multidisciplinary clinicians (Nursing, Medical and Therapy) and consumer (>25%) populated committees (Figure 3), workshops and external reviewers established.

Figure 3. Committee Structure

The views of the funding body (the Government of Australia) have not influenced the final recommendations of these guidelines.

The members of the development groups and advisory committee considered the possibility of competing interests across all stages of development, and none were declared.

Figure 4. Clinical Guideline Development Process

2.4 Adaptation Phase

2.4.1 Health Question

The PIPOH Determination of Health Question was used;

	Patient population (including disease characteristics); Paediatric Palliative Care (Including End of Life Care), inclusive of Perinatal- 18 years of age, in Australia.
	Intervention (s) of interest; Palliative management of clinical topic; 1. Agitation-management in the palliative patient, 2. Breathlessness-management in the palliative patient, 3. Sharing Significant News at end of life.
	Professionals/patients (audience for whom the guideline is prepared); primary audience is Health Care Professionals who provide care for the patient population (not PPC specialists who will have more intensive preparation and management expertise), acknowledgement that these guidelines will also be publicly available and are likely to also be accessed by consumers.
	Outcomes to be taken into consideration (purpose of the guideline); To help guide decision making and to gather expertise for best practice.
	Healthcare setting and context; Specifically Paediatric Palliative Care context across all health and community settings.

2.4.2 Stakeholder Workshops

For each guideline workshops were held separately for Consumers and multi-disciplinary Health Care Professionals (HCP) to discuss the content of the original NZCYCN Clinical Guideline and to understand their responses and advice into these. This was compiled into a Thematic Summary with the results of the Literature search for the Working Groups and contributed significant voice of the consumer statements into content.

2.4.3 Search and Screen Guidelines

Literature reviews for Agitation-management in the palliative patient, Breathlessness-management in the palliative patient, and Sharing Significant News at end of life were conducted by a Paediatric Hospital librarian to establish the evidence and best practice knowledge base for each guideline.

Search Strategy; Ovid MEDLINE, CINAHL, PubMed, Cochrane and Google Scholar. Search Strategy details Appendices 1, 2, 3.

There was universally a paucity of symptom specific, paediatric supporting evidence and no current PPC randomised controlled trials in the age and end of life care range. Additional known information sources from textbooks, existing international guidelines and expert resources were added to the body of literature for consideration.

Full papers were reviewed against pre-specified inclusion and exclusion criteria to identify studies that addressed the review question in the appropriate population.

Figure 5: PRISMA 2020 flow diagram for new systematic review for Agitation in PPC,

Figure 6: PRISMA 2020 flow diagram for new systematic review for Breathlessness in PPC and

Figure 7: PRISMA 2020 flow diagram for new systematic review for Sharing Significant News in PPC.

For each guideline between 20 and 27 sources of literature were identified for more detailed screening using the Appraisal of Guideline Research and Evaluation (AGREE II) instrument with two-four reviewers per document. AGREE II is a valid and reliable internationally used tool to appraise guidelines for methodological rigour and transparency of development with 23 items across six domains;

• Scope and purpose, which assesses: the overall aim of guideline; specific questions or topics; and the target population
• Stakeholder involvement, which assesses the extent of development by appropriate stakeholders
• Rigour of development, which assesses: the process used to gather and synthesise evidence; and methods used to formulate recommendations PPC
• Clarity of purpose, which assesses the language, structure and format
• Applicability, which assesses: barriers and facilitators to implementation; strategies to improve uptake; and resource implications
• Editorial independence, which assesses the formulation of recommendations based on competing interests.

AGREE Next Steps Consortium (2017).
The AGREE II Instrument [Electronic version].
Retrieved 25/02/2025, from http://www.agreetrust.org

The results of the screening processes were constructed into tables with key methodological grading, comments and practice points. The adaptation reference guidelines were selected from this assessment. These practice points were then further discussed and refined with the Working Groups to establish Developmental Considerations for adaptation of content.

Decision making in the Working Groups was based on the researched Developmental Considerations and included on consensus and then affirmed via external review.

Each guideline follows a clear sequence where the definition of the symptom, assessment and identification of causes, and management recommendations are built with attention to developmental stages and focus on the partnership with family. Goals of care statements clearly identify clinical aims and are the baseline for the auditing criteria for assessing impact of the intervention. All recommendations were referenced with supporting literature and provided with dot points and tables to ease identification of practice.

In the Australian context there were minimal cost implications or restrictions to provision of resources. A provision of the guideline was that only the medications which are readily accessible in this context are recommended.

2.4.4 Medication Referencing

Dosing information has largely been taken from A Practical Guide to Palliative Care in Paediatrics (PaPCANZ, 2023), validated with comparisons to the literature. This primary reference was chosen because the drugs available, and prescribing practices, are similar in Australia and New Zealand.

2.5 Finalisation Phase

2.5.1 External Review

The adapted clinical guidelines were circulated broadly for external review to target clinical users (including experts, pharmacist), consumers, public stakeholders, and methodological experts for comment, and these were considered, and amendments made by the Working Groups.

2.5.2 Endorsement

The final adaptations of the guideline were tabled through the Clinical Guideline Advisory Committee for endorsement to the Shaping the Future of Paediatric Palliative Care Steering Committee (with lead representatives from PCA, PaPCANZ, consumers and industry stakeholders.

The endorsed guideline documents were formatted and submitted to the Paediatric Improvement Collaborative Steering Committee for noting and publication in their Clinical Practice Guidelines hosted on the Royal Children’s Hospital website.

2.5.3 Procedure for reviewing and updating the guideline

Guidelines need to reflect current research, integrity and practice. The PCA and PaPCANZ partnership is responsible for ensuring that these guidelines are reviewed every three years or more frequently as significant practice changes are evident. The RCH Clinical Guideline team will share feedback from their system and data about access hits of the guidelines with the PCA Paediatric team for reporting and development.

2.5.4 Production of final guideline

The guidelines for;

• Agitation-management in the palliative paediatric patient
• Breathlessness-management in the palliative paediatric patient
• Sharing significant news about end of life in paediatrics are available on the Royal Children’s Hospital, Melbourne, Australia website in the Paediatric Improvement Collaborative (PIC) Clinical Practice Guideline section and related Clinical Practice Guidelines app. https://www.rch.org.au/clinicalguide/About_Clinical_Practice_Guidelines/

These sites will also be linked to the Paediatric Palliative Care website https://paediatricpalliativecare.org.au/