Our findings: research and data management

Cancer during adolescence and early adult life is one of the most under researched areas within oncology. Relatively little is known about the biologic, genetic, epidemiological, therapeutic, psychosocial and economic factors that affect incidence, disease outcomes and quality of life for young people and their families.

ONTrac at Peter Mac is committed to maintaining the highest standard of research, translating into the highest standard of clinical care to improve outcomes for patients and their families. In 2010 the Service aligned with the COSA National AYA research steering group which oversees research in the field of AYA oncology. This alignment has largely determined the scope of research conducted by the team which lies between national & international collaborative research and service improvement activity.

ONTrac at Peter Mac is working with professionals from healthcare institutions across Victoria to collect clinical and psychosocial data relating to AYA which will form a comprehensive dataset suitable for future investigation. ONTrac at Peter Mac's data collection strategy aligns with the National Cancer Data Strategy funded through the Youth Cancer Network.

ONTrac at Peter Mac is leading and partnering in a number of clinical research projects including:

The development of a pilot model of survivorship for AYA across Victoria
This project aims to develop, implement and evaluate a model of survivorship care for AYA patients with the objectives of understanding current AYA GP involvement and patient management; supporting the young person to manage their healthcare; establishing relationship between the patient and their GP; developing tools to meet these objectives including AYA specific survivorship information. It is hoped that this will improve survivorship care which is currently lacking and promote ongoing health and wellbeing for young people with cancer in Victoria.
Contact: Kate Thompson
Funding Source: Victorian Department of Health

AYA PK: A Multi-Institutional Cross-Discipline Non-Therapeutic Study
This is a clinical trial investigating the pharmacokinetics and pharmacodynamics of Doxorubicin in adolescent young adults (AYA) compared to children with newly diagnosed Osteosarcoma, Ewing's Sarcoma and Hodgkin's Disease aged 1-40 years.
Contact: Dr Lisa Orme
Funding Source: Victorian Cancer Agency

Fulfilling the vision of youth-friendly cancer care: How well are we meeting the psychosocial needs of adolescent and young adult (AYA) patients
Lead by: The Centre for Adolescent Health Melbourne
Contact: Kate Thompson
Funding Source: Cancer Australia

Patterns of care and experiences of care for adolescents & young adults (AYA) with cancer
There is increasing concern, across several countries, that outcomes of care for AYA with cancer are not optimal. This project aims to improve outcomes of care for AYA with cancer by providing information about the best way to organise health services. It will do this by describing patterns of care for 700 AYA patients with cancer; providing detailed data on experiences of care for 300 patients and identifying gaps in services and unmet supportive care needs of AYA.
Lead by: Cancer Council Victoria
Contact: Kate Thompson
Funding Source: NHMRC

The Consolidation of the ONTrac at Peter Mac Research Agenda
This involves a partnership between ONTrac at Peter Mac and The University of Melbourne to facilitate the part time appointment of A/Prof Lynette Joubert to consolidate the collaborative research agenda for ONTrac at Peter Mac.
Contact: Lucy Holland
Funding: Victorian Cancer Agency

An Investigation into the Efficacy of End of Treatment Care Planning for AYA Patients Diagnosed with Sarcoma
This is a pilot project that is investigating the use of End of Treatment care planning for patients who are finishing treatment for sarcoma at Peter MacCallum Cancer Centre.
Contact: Lucy Holland

The Relationship between AYA Patients and their GPs
This is a small pilot project investigating the relationship that AYA patients have with their GPs and aims to identify youth friendly GPs throughout Victoria to improve services and holistic care for young people with cancer.
Contact: Lucy Holland

An Investigation into the Epidemiology of AYA Patients Referred to ONTrac at Peter Mac since 2004
Utilising a data mining method, this study will examine the epidemiology and characteristics of young people who have been referred to ONTrac at Peter Mac since inception in 2004. This will be done across all patients and by diagnosis.
Contact: Lucy Holland

The Victorian & Tasmanian Youth Cancer Network (VTYCN) Project Data Collection
This project aims to better understand current referral pathways and both medical and psychosocial management of young people with cancer aged 15-25 years throughout Victoria and Tasmania. It is a state-wide, multicentre project that involves the central collection of both retrospective and prospective AYA data as well as facilitating case discussion and resource provision to the place of care where required.
Contact: Louise Devereux
Funding: Youth Cancer Fund

 

WHO WE ARE

About ONTrac at Peter Mac

Background

Meet the team

Referrals

Consumer participation and governance

Contact

WHAT WE DO

Clinical services

State-wide secondary consultation service

Professional development, training and education

Victorian cancer trials link

OUR FINDINGS

Research and data management

Publications

RESOURCES

Web links

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