A. Guideline development committee

The Guideline Development Committee comprised a Lead Development Team, a Steering Committee (panel of experts) and a Health Professional and Consumer Group. The Guideline Development Committee are shown in Figure 1 and the specific roles and responsibilities of each member/group are detailed in the following sections. Table 1 includes all members of the Guideline Development Committee detailing name and organisation, discipline, role in the guideline development process and experience with childhood brain tumour and/or leukaemia.

Figure 1 Guideline Development Committee

CBTL = Childhood brain tumour or leukaemia

Table 1 Guideline Development Committee Members

Name and Organisation	Role	Discipline	Experience with childhood brain tumour or leukaemia (CBTL)
Dr Kimberley Docking The University of Sydney	Chair	Speech Pathology	Leader of research lab focused on communication and swallowing in children diagnosed with CBTL; 20 years clinical and research experience in CBTL as a researcher and Speech Pathologist
Dr Rosemary Hodges The University of Sydney	Project Co-ordinator	Speech Pathology	Speech Pathologist with 10 years clinical and research experience in paediatrics and researcher in area of CBTL for over 3 years
Dr Lani Campbell The University of Sydney	Research and Evidence Consultant	Speech Pathology	Speech Pathologist and researcher in CBTL for 18 months
Ms Sara Chami The University of Sydney	Research Assistant	Speech Pathology	Speech Pathologist and researcher in area of CBTL for over 2 years
Ms Stefani Ribeiro Knijnik The University of Sydney	Research Affiliate	Speech Pathology	Speech Pathologist experience in infants and children with dysphagia as a result of CBTL; researcher in CBTL for 1 year
Ms Emma Campbell The University of Sydney; Western Sydney Local Health District	Research Assistant	Speech Pathology	Researcher in CBTL for 2 years
Professor Angela Morgan Murdoch Children’s Research Institute; University of Melbourne	Steering Committee	Speech Pathology	20 years of clinical and research work in paediatric Speech Pathology, including CBTL
Professor Claire Wakefield School of Women's and Children's Health, UNSW Medicine, UNSW Sydney; Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital	Steering Committee	Psychology	Leader of Australasia’s largest paediatric psycho-oncology research group; researcher with focus on patient/family needs in childhood cancer, including CBTL
Professor Philippe Paquier Vrije Universiteit Brussel (VUB) & Université Libre de Bruxelles (ULB)	Steering Committee	Neurolinguistics	Researcher with focus on paediatric neurocognitive and speech/ language disorders, including special interests in: cerebellar mutism syndrome and the long- term neurocognitive outcomes of childhood brain tumour survivors
Dr Luciano Dalla-Pozza The Cancer Centre for Children, The Children's Hospital at Westmead, Sydney Children’s Hospitals Network	Steering Committee	Oncology	Director of major metropolitan paediatric cancer centre; provision of primary care and follow-up
Dr Mary-Clare Waugh The Children’s Hospital at Westmead, Sydney Children’s Hospitals Network; The University of Sydney Medical School	Steering Committee	Rehabilitation	Over 20 years experience working with children with congenital and acquired brain and/or spinal cord lesions resulting in dysphagia and communication difficulties; Extensive experience working in large multidisciplinary teams with rehabilitation goal directed interventions
Ms Maria Messina Consumer	Steering Committee	Consumer & Educator	Mother of child diagnosed with leukaemia
Ms Claire Radford Queensland Children's Hospital	Health Professional and Consumer Group	Speech Pathology	5 years experience as senior Speech Pathologist and allied health team leader (oncology and palliative care). Previously, 6 years clinical experience treating children with acquired brain injury including children with CBTL
Ms Brooke Spencer Queensland Children's Hospital	Health Professional and Consumer Group	Oncology Nursing	25 years paediatric oncology nursing with the last 4 years in neuro-oncology clinical nurse consultant role
Ms Hayley Coulson Queensland Children’s Hospital	Health Professional and Consumer Group	Physiotherapy	5 years experience as senior oncology Physiotherapist in paediatric setting
Dr Cinzia De Luca The Royal Children's Hospital, Melbourne	Health Professional and Consumer Group	Neuropsychology	Co-ordinator of the neuropsychology service at major metropolitan children’s hospital
Ms Candice Brady The Children's Hospital at Westmead, Sydney Children's Hospitals Network	Health Professional and Consumer Group	Speech Pathology	Speech Pathologist providing services to children post- tumour resection /oncology care
Ms Suzi Drevensek The Children's Hospital at Westmead, Sydney Children’s Hospitals Network	Health Professional and Consumer Group	Speech Pathology	Speech Pathologist providing services to children who have acquired brain injury associated with brain tumour
Dr Robyn Stargatt La Trobe University	Health Professional and Consumer Group	Neuropsychology	30 years experience in clinical work and research in public and private sector with children diagnosed with CBTL
Ms Amanda Simon The Children's Hospital at Westmead, Sydney Children's Hospitals Network	Health Professional and Consumer Group	Speech Pathology	Assessment and management of children with CBTL who have swallowing difficulties
Ms Kate Osland The Children’s Hospital at Westmead. Sydney Children’s Hospitals Network	Health Professional and Consumer Group	Speech Pathology	7 years experience providing inpatient and outpatient assessment and therapy to children with CBTL
Ms Gloria Tzannes The Children's Hospital at Westmead, Sydney Children's Hospitals Network	Health Professional and Consumer Group	Speech Pathology	Assessment and management of children with CBTL who present with swallowing difficulties and communication disorders; contributes at governance level model of care within major metropolitan children’s hospital
Ms Melissa Parkin Sydney Children’s Hospital Randwick, Sydney Children’s Hospitals Network	Health Professional and Consumer Group	Speech Pathology	Acute and chronic feeding and swallowing disorders in children with CBTL
Dr Jennifer Cohen Discipline of Paediatrics, School of Women's and Children's Health, University of NSW	Health Professional and Consumer Group	Dietetics	15 years experience as clinicaldietitian providing nutritional support for families and children being treated for childhood cancer, including CBTL; researcher with focus on nutritional management of childhood cancer patients and survivors
Dr Laura Janzen The Hospital for Sick Children, Toronto	Health Professional and Consumer Group	Neuropsychology	12 years experience providing clinical neuropsychology assessment and consultation services to the neuro-oncology and leukemia programs ina major metropolitan children’s hospital; researcher in neuro-oncology
Ms Jane Fong Women’s and Children’s Hospital, Adelaide	Health Professional and Consumer Group	Speech Pathology	Speech pathology assessment and therapy for children with brain tumour or spinal cord tumour
Ms Lauren LeemingSydney Children’s Hospitals Network	Health Professional and Consumer Group	Speech Pathology	14 years experience working with paediatric feeding/swallowing difficulties within the acute hospital setting including the oncology/ haematology caseload
Dr Amanda Lane- Brown Sydney Children’s Hospitals Network	Health Professional and Consumer Group	Psychology	Clinical psychologist working in inpatient rehabilitation team with children who are diagnosed with brain tumours
Ms Roxanne McLeod Sydney Children’s Hospitals Network	Health Professional and Consumer Group	Music Therapy	8.5 years experience providing music therapy to paediatric oncology patients and their families
Miriam Cromie Child Life and Music Therapy, The Children’s Hospital at Westmead, Sydney Children’s Hospitals Network	Health Professional and Consumer Group	Music Therapy	12 years experience in paediatric oncology as both a music therapist and child life therapist
Dr Geoff McCowage The Children’s Hospital at Westmead, Sydney Children’s Hospitals Network	Health Professional and Consumer Group	Oncology	Paediatric oncologist in major metropolitan children’s hospital, member of multidisciplinary teams for both neurological cancer (brain and spinal cord) and leukaemia
Eliza-Jane Potter The Children’s Hospital at Westmead, Sydney Children’s Hospitals Network	Health Professional and Consumer Group	Nursing	Paediatric oncology nurse in major metropolitan children’s hospital
Dr Sumanth Nagabushan The Children’s Hospital at Westmead, Sydney Children’s Hospitals Network; The University of Sydney	Health Professional and Consumer Group	Oncology	In and outpatient management of children diagnosed CBTL including overseeing routine clinical care, organising chemo-radiotherapy, coordinating multidisciplinary care with tertiary and local healthcare agencies, and engaging in clinically relevant research
Jessica De Bolfo The Royal Children’s Hospital Melbourne	Health Professional and Consumer Group	Speech Pathology	Provide inpatient and outpatient service to oncology patients
Marion Corbett Consumer	Health Professional and Consumer Group	Consumer	Mother of child diagnosed with brain tumour
Tracey Power Consumer	Health Professional and Consumer Group	Consumer	Mother of child diagnosed with brain tumour

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Committee Roles[edit source]

Chair[edit source]

The Chair, Dr Kimberley Docking, is an experienced Speech Pathologist and researcher with over 20 years of experience in the area of CBTL. The Chair was responsible for:

Obtaining and managing funding and reporting to the funding body throughout the guideline process;
Conceptualisation of the guideline;
Registering the guideline with the National Health and Medical Research Council (NHMRC) and developing NHMRC timeline documentation;
Employment of paid team members working on the project;
Inviting and engaging the Steering Committee;
Liaising with key stakeholders, including major national children’s hospitals throughout the guideline process;
Development of the clinical questions to be addressed in the guideline in consultation with the Project Co-ordinator and Steering Committee;
Systematic review screening, data extraction and appraisal in conjunction with Project Co-ordinator and Research Assistant team;
Conducting appropriate methodology for rating the quality of evidence and strength of recommendations in conjunction with Research and Evidence Consultant, Project Co-ordinator, and Research Assistant team;
Recruitment of a Health Professional and Consumer Group, including consumer members, in conjunction with Project Co-ordinator;
Development of health professional and consumer survey in conjunction with Project Co-ordinator and Research Assistants, Ms Sara Chami and Ms Emma Campbell;
Ethics application for health professional and consumer survey in conjunction with Project Co-ordinator and Research Assistant, Ms Sara Chami;
Data analysis methods for health professional and consumer survey in conjunction with Project Co-ordinator and Research Assistant, Ms Sara Chami;
Liaising with the Project Co-ordinator and Research and Evidence Consultant to complete the GRADE Evidence to Decision (EtD) Framework processes;
Providing input as a member of the Steering Committee via completion of the GRADE Evidence- to-Decision Framework;
Development of evidence-based recommendations in conjunction with Project Co-ordinator and the Steering Committee;
Development of the Guideline, Administrative & Technical report and other associated documents in conjunction with the Project Co-ordinator and Research and Evidence Consultant;
Development of the Dissemination & Implementation Plan;
Organising public consultation; inviting key national and international stakeholder organisations to comment, liaising with organisations;
Development of Public Consultation Submission Summary and responses to submissions;
Nominating independent expert reviewers;
Working with NHMRC to ensure all guideline requirements met in conjunction with the Project Co-ordinator.
Responded to independent and methodological reviews; completed review response to reviewers documentation as guideline developer;
Finalised all guideline documentation and submitted to NHMRC for consideration for approval;
Presented guideline to NHMRC Council Meeting for approval;
Commissioned and coordinated translations of Guideline Summary;
Commissioned and coordinated publication of all guideline documents;
Release of guidelines according to NHMRC requirements.

Project Co-ordinator[edit source]

The Project Co-ordinator, Dr Rosemary Hodges, is an experienced paediatric Speech Pathologist and researcher. She was responsible for:

Coordination of the guideline project and team members;
Development of the clinical questions to be addressed in the guideline in consultation with Chair and Steering Committee;
Systematic search of the literature evidence;
Systematic review screening, data extraction and appraisal in conjunction with Chair and Research Assistants;
Creating summary of individual study evidence tables, GRADE summary of findings tables and GRADE EtD tables with guidance from Research and Evidence Consultant;
Conducting appropriate methodology for rating the quality of evidence and strength of recommendations in conjunction with Research and Evidence Consultant, Chair, and Research Assistants;
Recruitment of a Health Professional and Consumer Group in conjunction with Chair;
Development of health professional and consumer survey in conjunction with Chair and Research Assistants, Ms Sara Chami and Ms Emma Campbell;
Ethics application for health professional and consumer survey in conjunction with Chair and Research Assistant, Ms Sara Chami;
Data analysis methods for health professional and consumer survey in conjunction with Chair and Research Assistant, Ms Sara Chami;
Development of Declarations of Interest form, collecting and collating declarations of interests from all team members;
Collating the evidence from the systematic review and presenting to the Steering Committee in accessible way to allow completion of the GRADE EtD Framework in conjunction with Research and Evidence Consultant;
Providing input as a member of the Steering Committee via completion of the GRADE EtD Framework;
Development of evidence-based recommendations in conjunction with the Steering Committee and Chair;
Development of the Guideline, Administrative & Technical Report in conjunction with Research and Evidence Consultant and Chair;
Working with NHMRC to ensure all guideline requirements met in conjunction with Chair.

Research and Evidence Consultant[edit source]

Dr Lani Campbell is an experienced Speech Pathologist and Research and Evidence Consultant. She provided specific methodological input into the GRADE certainty of evidence ratings and GRADE EtD Frameworks. She was responsible for:

Providing guidance on the use of the Grading of Recommendations Assessment, Development and Evaluation (GRADE; http://www.gradeworkinggroup.org/) approach to rating the certainty of the evidence;
Consulting with key GRADE methodologists about the project;
Developing templates and guidance on completing individual study summary tables, GRADE Summary of Findings tables and GRADE EtD tables;
Collating the evidence from the systematic review and presenting to the Steering Committee in accessible way to allow completion of the GRADE EtD Framework in conjunction with Project Co-ordinator;
Providing input as a member of the Steering Committee via completion of the GRADE EtD Framework;
Contributing to the structure and content of the Administrative & Technical Report in consultation with the Project Co-ordinator;
Contributing knowledge translation content in guideline document;
Contributing to Dissemination & Implementation Plan.

Research Assistant team[edit source]

The Lead Development team also included two Research Assistants (Ms Sara Chami, Ms Emma Campbell) and an honorary Research Affiliate (Ms Stefani Ribeiro Knijnik). All are qualified and experienced Speech Pathologists with research experience and training at either Honours or Research Masters level. Their roles included:

Contributing to content of the health professional and consumer survey and creation of the survey on Qualtrics platform;
Preparation of ethics application documents for the health professional and consumer survey, in consultation with Chair and Project Co-ordinator;
Developing data extraction forms and spreadsheets for systematic review in consultation with Project Co-ordinator;
Data extraction for systematic review;
Completing Joanna Briggs Institute (JBI) appraisal checklists for systematic review;
Data entry and analysis for the health professional and consumer survey;
Referencing and formatting support for guideline documents;
Providing input to draft guideline documents.

Steering Committee (panel of experts)[edit source]

The Steering Committee comprised six members (five clinical researchers and health professionals with expertise in Speech Pathology, Psychology, Neurolinguistics, Rehabilitation, and Oncology; and one consumer who is a parent of a child diagnosed with leukaemia) in addition to the Chair, Project Co-ordinator and Research and Evidence Consultant. Members of the Steering Committee were invited to the role by the Chair or through a call for interest via ANZCHOG (Australian and New Zealand Childrens Haematology/Oncology Group). The rationale for the guideline and roles/responsibilities of Steering Committee members were provided by the Chair and discussed when each individual was invited.

The Steering Committee’s role was to provide input and feedback across all phases of guideline development including clinical question development, systematic review, survey development, evidence synthesis and development of the recommendations (please note: the consumer member of the Steering Committee joined prior to the presentation of the evidence synthesis, and contributed to the development of recommendations).

Health Professional and Consumer Group[edit source]

The Health Professional and Consumer Group included 22 multidisciplinary health professionals with experience in CBTL and two consumers (parents of children diagnosed with CBTL). The role of Health Professional and Consumer Group members was to complete an online survey to gather their perspectives and input into the clinical management of communication and swallowing in children diagnosed with CBTL.

Consumer perspectives and involvement[edit source]

Consumer involvement was integral to the development of this guideline. A consumer representative was a member of the Steering Committee. She is the mother of a child diagnosed with leukaemia. Her perspectives and input were invaluable in the process of the GRADE EtD frameworks and the development of recommendations. Two consumers provided input as members of the Health Professional and Consumer Group, both mothers of children diagnosed with brain tumour. They provided input via a health professional and consumer survey.

Participation and representation of Aboriginal and Torres Strait Islander people and culturally and linguistically diverse groups[edit source]

The Guideline Development Committee membership comprised one member who is an Aboriginal and Torres Strait Islander person as well as numerous culturally and linguistically diverse (CALD) members. A total of 38% of the Guideline Development Committee chose to identify as either an Aboriginal and Torres Strait Islander person or CALD group.