AYA research

A model of youth participation in Victorian cancer care  

Co-designed with young people and representing a world-first initiative in oncology, the Youth Participation Framework established by the Victorian AYA Cancer Service with support from the Victorian Government provides a blueprint for embedding youth participation in AYA cancer service planning and delivery. The Framework adopts a tiered approach encompassing a range of participation mechanisms with information, training, and support for young people alongside. (Project Leads: Ilana Berger & A/Prof Kate Thompson | Funding: Victorian Department of Health) 

Development and evaluation of a health, wellbeing and survivorship mobile app for AYA cancer survivors 

ReGenerate is a mobile app developed to help address unmet information and education needs of AYA cancer survivors and support their transition to life after treatment. Co-designed by young people, the app features nine educational topics each comprising interactive text, videos, and youth-hosted podcasts, integrated with tools and features to support self-management. This mixed methods, cross-sectional study is aimed at understanding and assessing the acceptability, usability and functionality of the app and will inform refinement of ReGenerate prior to public release. (Project Leads: Andrew Murnane & Samantha Van Staalduinen | Funding: Victorian Department of Health) 

Building workforce capability in a specialist AYA cancer service  

This project focuses on the design, development, and implementation of a suite of initiatives to support our workforce to deliver safe, high quality and evidence-based care. (Project Leads: Associate Professor Kate Thompson & Ilana Berger | Funding: Victorian Department of Health) 

Development of an AYA Palliative Care Framework  

This project focuses on the development of an Adolescent and Young Adult Palliative Care Framework to guide clinical care, education, and research priorities across Victoria. (Project Leads: Associate Professor Jeremy Lewin & Ilana Berger | Funding: Victorian Department of Health) 

Investigation of nutritional status, outcomes and needs in AYA following a cancer diagnosis

This project will generate evidence for the nutritional status and needs of AYA undergoing cancer treatment across the four largest centres managing AYA in Victoria, by identifying the prevalence of nutrition disorders and exploring the nutrition-related experiences and needs of AYA following a cancer diagnosis. (Victorian AYA Cancer Service Project Lead: Andrew Murnane | Funding: Victorian Department of Health, Caidan's Reach)

Improving AYA clinical trial access 

The VCCC Increasing AYA Access to Clinical Trials Program has been established to develop practical solutions to improve AYA clinical trial participation in Victoria. A range of outputs and advocacy work designed to alleviate four key barriers to AYA clinical trial participation have been achieved following a comprehensive mixed methods review and stakeholder consultation process. Current initiatives aimed at improving access and availability of clinical trials for the AYA population focus on establishing a precinct-wide clinical trial governance and/or tele-trials model. (Victorian AYA Cancer Service Project Lead: Associate Professor Jeremy Lewin | Funding: VCCC Alliance via the Victorian Government) 

Publications: 

• Ellis JA, Malalasekera VS, Allan C, Choong PF, Hansford JR, Hehir R, Morello N, O'Callaghan S, Orme L, Phillipson N, Rosenthal MA, Sawyer S, Strong R, Super L, Watt A, Williams C, Woollett A, Robertson A, Lewin J. Systems-level change to alleviate barriers to cancer clinical trial access for adolescents and young adults in Australia. J Adolesc Young Adult Oncol. 2022 Apr;11(2):173-180. 

AYA Optimal Care Pathway (OCP) 

OCPs are based on current best practice and include references to clinical guidelines, practice standards, current research and, where required, consensus agreement regarding currently accepted approaches to optimal treatment. Aligned with the Aboriginal and Torres Strait Islander OCP and led in partnership with the Paediatric Integrated Cancer Service, the AYA OCP is aimed at reducing disparities and improving outcomes and experiences of cancer care for young people. (Victorian AYA Cancer Service Project Leads: Associate Professor Kate Thompson, Associate Professor Jeremy Lewin) 

Publications: 

• Victorian Paediatric Integrated Cancer Service. Optimal care pathway for adolescents and young adults with cancer. 1st ed. Melbourne: Paediatric Integrated Cancer Service; 2022.  

AYA Can-Sleep 

In partnership with the Department of Psychology at Peter Mac and the Victorian & Tasmanian Youth Cancer Action Board, this project aims to adapt, implement, and evaluate the Can-Sleep stepped care intervention to identify and treat sleep difficulties in AYA cancer survivors. (Victorian AYA Cancer Service Project Leads: Associate Professor Kate Thompson, Associate Professor Jeremy Lewin, Andrew Murnane, Ilana Berger | Funding: Victorian Government) 

Publications: 

• Vaughan E, Ftanou M, Lewin J, Murnane A, Berger I, Wiley JF, Hickey M, Bullen D, Jefford M, Goldin J, Stonehouse J, Thompson K. AYA 'Can-Sleep' programme: protocol for a stepped-care, cognitive behavioural therapy-based approach to the management of sleep difficulties in adolescents and young adults with cancer. Pilot Feasibility Stud. 2022 Jul 28;8(1):159. 

Youth Cancer Services Experience of Care  

Coordinated by CanTeen Australia and intended for implementation across the five lead jurisdictional Youth Cancer Services in Australia, this cross-sectional study aims to understand the AYA cancer patient and supportive others’ (e.g. parents, partners, siblings) perspectives of their experiences of care across the treatment pathway, from diagnosis to treatment completion. Outcomes will assist in identifying areas for service improvement and defining areas of future research. (Victorian AYA Cancer Service Lead Investigator: Associate Professor Kate Thompson | Funding: Commonwealth Youth Cancer Services) 

Validation of a psychosocial screening tool for AYA patients and survivors  

The Distress Thermometer (DT) is a widely used distress screening tool that has previously been validated with adults, and forms part of the Adolescent & Young Adult Supportive Care Screening Tool developed in partnership with CanTeen Australia. This international study aims to validate for AYA patients and survivors the clinical utility of the DT and the Problem Checklist (PCL), which covers physical, emotional, social, practical, and family domains and information needs. (Victorian AYA Cancer Service Lead Investigator: Associate Professor Kate Thompson | Funding: Commonwealth Youth Cancer Services) 

Publications: 

• Patterson P, McDonald F, Anazodo A, Costa D, Wakefield C, White K, Thompson K, Osborn M. Validation of the distress thermometer for use among adolescents and young adults with cancer in Australia: a multicentre study protocol. Clin Oncol Adolesc Young Adults. 2015 Jul;5:51-62. 
• Patterson P, D'Agostino NM, McDonald FEJ, Church TD, Costa DSJ, Rae CS, Siegel SE, Hu J, Bibby H, Stark DP; International AYA Cancer Distress Screening Group. Screening for distress and needs: Findings from a multinational validation of the Adolescent and Young Adult Psycho-Oncology Screening Tool with newly diagnosed patients. Psychooncology. 2021 Nov;30(11):1849-58. 

Patterns and experiences of care for AYA with cancer 

This national population-based study aimed to improve outcomes of care for AYAs with cancer by identifying the modifiable health system practices in Australia that influence patterns and experiences of care. Methods included patterns of care audit, qualitative interviews, and a cross-sectional retrospective self-report survey. (Victorian AYA Cancer Service Investigators: Associate Professor Lisa Orme & Associate Professor Kate Thompson | Funding: NHMRC (National Health and Medical Research Council)) 

Publications:

• Bibby H, White V, Thompson K, Anazodo A. What are the unmet needs and care experiences of adolescents and young adults with cancer? A systematic review. J Adolesc Young Adult Oncol. 2017 Mar;6(1):6-30. 
• White V, Skaczkowski G, Thompson K, Bibby H, Coory M, Pinkerton R, Nicholls W, Orme LM, Conyers R, Phillips MB, Osborn M, Harrup R, Anazodo A. Experiences of care of adolescents and young adults with cancer in Australia. J Adolesc Young Adult Oncol. 2018 Jun;7(3):315-25. 
• Skaczkowski G, White V, Thompson K, Bibby H, Coory M, Pinkerton R, Orme LM, Conyers R, Phillips MB, Osborn M, Harrup R, Anazodo A. Do Australian adolescents' and young adults' experiences of cancer care influence their quality of life? Psycho-Oncol. 2018 Mar;27(3):990-7. 
• White V, Skaczkowski G, Anazodo A, Bibby H, Nicholls W, Pinkerton R, Thompson K, Orme LM, Conyers R, Osborn M, Phillips MB, Harrup R, Walker R, Coory M. Clinical trial participation by adolescents and young adults with cancer: A continued cause for concern? Semin Oncol. 2018 Oct;45(5-6):275-83. 
• Skaczkowski G, White V, Thompson K, Bibby H, Coory M, Orme LM, Conyers R, Phillips MB, Osborn M, Harrup R, Anazodo A. Factors influencing the provision of fertility counseling and impact on quality of life in adolescents and young adults with cancer. J Psychosoc Oncol. 2018 Jul-Aug;36(4):484-502. 
• Skaczkowski G, White V, Thompson K, Bibby H, Coory M, Pinkerton R, Nicholls W, Orme LM, Conyers R, Phillips MB, Osborn M, Harrup R, Anazodo A. Factors influencing the documentation of fertility-related discussions for adolescents and young adults with cancer. Eur J Oncol Nurs. 2018 Jun;34:42-8. 
• White VM, Skaczkowski G, Pinkerton R, Coory M, Osborn M, Bibby H, Nicholls W, Orme LM, Conyers R, Phillips MB, Harrup R, Walker R, Thompson K, Anazodo A. Clinical management of Australian adolescents and young adults with acute lymphoblastic and myeloid leukemias: A national population-based study. Pediatr Blood Cancer. 2018 Nov;65(11):e27349. 
• White VM, Orme LM, Skaczkowski G, Pinkerton R, Coory M, Osborn M, Bibby H, Nicholls W, Conyers R, Phillips MB, Harrup R, Walker R, Thompson K, Anazodo A. Management of sarcoma in adolescents and young adults: An Australian population-based study. J Adolesc Young Adult Oncol. 2019 Jun;8(3):272-80.  
• Harrup R, White VM, Coory M, Walker R, Anazodo A, Skaczkowski G, Bibby H, Osborn M, Phillips MB, Conyers R, Thompson K, Orme LM, Pinkerton R, Nicholls W. Treatment and outcomes for central nervous system tumors in Australian adolescents and young adults: A population-based national study. J Adolesc Young Adult Oncol. 2021 Apr;10(2):202-8. 

Fulfilling the vision of youth-friendly cancer care: how well are we meeting the psychosocial needs of AYA patients? 

This collaborative study with the Royal Children’s Hospital Melbourne Centre for Adolescent Health aimed to improve our understanding of youth-friendly cancer care and define guiding principles to shape a best practice service model. View further study details and translation materials. (Victorian AYA Cancer Service Investigators: Associate Professor Lisa Orme & Associate Professor Kate Thompson | Funding: Cancer Australia & partners) 

Publications: 

• Sawyer SM, McCarthy MC, Dunt D, McNeil R, Thompson K, Orme L, Drew SE. Fulfilling the vision of youth-friendly cancer care: A study protocol. J Adolesc Young Adult Oncol. 2016 Sep;5(3):267-77. 
• McCarthy MC, McNeil R, Drew S, Dunt D, Kosola S, Orme L, Sawyer SM. Psychological distress and posttraumatic stress symptoms in adolescents and young adults with cancer and their parents. J Adolesc Young Adult Oncol. 2016 Dec;5(4):322-29. 
• Sawyer SM, McNeil R, McCarthy M, Orme L, Thompson K, Drew S, Dunt D. Unmet need for healthcare services in adolescents and young adults with cancer and their parent carers. Support Care Cancer. 2017 Jul;25(7):2229-39. 
• Kosola S, McCarthy MC, McNeil R, Orme LM, Drew S, Sawyer SM. Early education and employment outcomes after cancer in adolescents and young adults. J Adolesc Young Adult Oncol. 2018 Apr;7(2):238-44. 
• McCarthy MC, McNeil R, Drew S, Orme L, Sawyer SM. Information needs of adolescent and young adult cancer patients and their parent-carers. Support Care Cancer. 2018 May;26(5):1655-64. 
• McNeil RJ, McCarthy M, Dunt D, Thompson K, Kosola S, Orme L, Drew S, Sawyer S. Financial challenges of cancer for adolescents and young adults and their parent caregivers. Soc Work Res. 2019 Mar;43(1):17-30. 
• Sawyer SM, McNeil R, Thompson K, Orme LM, McCarthy M. Developmentally appropriate care for adolescents and young adults with cancer: how well is Australia doing? Support Care Cancer. 2019 May;27(5):1783-92. 

Youth Cancer Centre: Reflections and preferences of AYA accessing an age-appropriate environment 

Co-designed with young people, the Youth Cancer Centre opened in 2016 as an outpatient environment residing within the adult hospital setting at Peter Mac. This project explored how the Centre is used by young people and their families and which aspects contribute to their hospital experience, to inform further refinement of the environment and services delivered within. Outcomes also include development of mechanisms for visitors to provide ongoing feedback. (Project Lead: Vanessa Mayanja)

Publications:

• Mayanja V, Thompson K, Lewin J. Youth cancer centre: evaluation of adolescents and young adults accessing an age-appropriate environment. Aust J Cancer Nurs. 2023;24(1):24-32.  

Implementation and evaluation of a model of youth-friendly genetic counselling  

In response to growing numbers of AYA accessing genetic services for the assessment of hereditary cancer risk and increasing evidence of the practice complexities faced in genetics work with this population, this partnership with the Parkville Familial Cancer Centre saw the development of a youth-friendly model of genetic counselling and program of education for those working in the field. (Victorian AYA Cancer Service Project Leads: Lucy Holland (NLE) & Associate Professor Kate Thompson | Funding: Peter MacCallum Cancer Centre Foundation) 

Publications: 

• Holland L, Young MA, Lewin J, Pearce A, Thompson K. Education in youth-friendly genetic counseling. J Genet Couns. 2021 Aug;30(4):1133-42.  
• Young MA, Thompson K, Lewin J, Holland L. A framework for youth-friendly genetic counseling. J Community Genet. 2020 Apr;11(2):161-70. 

Understanding and meeting the needs of LGBTQIA+ AYA 

This project sought to define mechanisms for delivering a service that is appropriate and inclusive for LGBTQIA+ young people living with cancer through a comprehensive literature review, consultation with young people and key health and community agencies, and an online survey for healthcare professionals. Recommendations for service improvement relating to clinical practice policies and procedures, safe and welcoming physical spaces, collection of reliable data, partnerships with LGBTQIA+ youth organisations, and staff education and training are in various stages of implementation. A resource for LGBTQIA+ young people with cancer has also been developed. (Project Leads: Mairghread Clarke (NLE) & Associate Professor Kate Thompson | Funding: Youth Affairs Council of Victoria, Victorian Government) 

Publications: 

• Clarke M, Lewin J, Lazarakis S, Thompson K. Overlooked minorities: The intersection of cancer in lesbian, gay, bisexual, transgender, and/or intersex adolescents and young adults. J Adolesc Young Adult Oncol. 2019 Oct;8(5):525-8. 

Developing and evaluating a framework for AYA education and vocation support 

This project sought to understand the educational and vocational outcomes of AYA diagnosed with cancer and develop a framework for addressing barriers to education and vocation. (Project Leads: Olivia Doidge & Nicole Edwards (NLE)) 

Publications: 

• Doidge O, Edwards N, Thompson K, Lewin J. A conceptual framework to identify and address the education and vocational barriers experienced by adolescents and young adults with cancer. J Adolesc Young Adult Oncol. 2019 Aug;8(4):398-401. 
• Dax V, Edwards N, Doidge O, Morkunas B, Thompson K, Lewin J. Evaluation of an educational and vocational service for adolescent and young adults with cancer: A retrospective review. J Adolesc Young Adult Oncol. 2021 Feb;10(1):56-65.  

Exercise rehabilitation for AYA cancer patients 

This body of work sought to understand exercise habits and physical activity levels of AYA cancer survivors, preferences for exercise-based interventions and assess the effectiveness of exercise-based interventions. (Lead Investigator: Andrew Murnane) 

Publications: 

• Murnane A, Kiss N, Fraser SF, Lewin J. Health-related quality of life, fatigue and health behaviours in Australian adolescent and young adult cancer survivors. Pediatr Blood Cancer. 2021 Oct;68(10):e29243. doi: 10.1002/pbc.29243. Epub 2021 Jul 26. 
• Atkinson M, Murnane A, Goddard T, Pendergrast C, Rogers P, Manudhane R, Osborn M. A randomized controlled trial of a structured exercise intervention after the completion of acute cancer treatment in adolescents and young adults. Pediatr Blood Cancer. 2021 Jan;68(1):e28751. doi: 10.1002/pbc.28751. Epub 2020 Oct 16. 
• Murnane A, Thompson K, Mancuso S, Lewin J, Orme L. Exploring the effect of exercise physiology intervention among adolescent and young adults diagnosed with cancer. Rehabil Oncol. 2019 Apr;37(2):55-63.  
• Murnane A, Gough K, Thompson K, Holland L, Conyers R. Adolescents and young adult cancer survivors: exercise habits, quality of life and physical activity preferences. Support Care Cancer. 2015 Feb;23(2):501-10. 
• Smith A, Murnane A, Thompson K, Mancuso S. ReActivate- a goal-oriented rehabilitation program for adolescent and young adult cancer survivors. Rehabil Oncol. 2019 Oct;37(4):153-9.