How well are we meeting the psychosocial needs of adolescent and young adult (AYA) patients

Background

Cancer is a major contributor to the burden of disease in young Australians. Over the past decade, the Australian government has made a significant financial commitment to service redevelopment to improve the health and life outcomes of young people with cancer, a group that has not experienced the same improvements in survival as other age groups. There are many explanations for this ‘survival gap’. However, regardless of the explanation, there is widespread acknowledgement by governments, health care services and consumers alike that the informational and psychosocial needs of adolescent and young adults with cancer (AYA) are not being met.  Given the growing evidence of the impact of these unmet needs on the current and future health of AYAs with cancer, improving their access to developmentally appropriate psychosocial support is critical.

The objective of the study is to use research to inform the development of a model of care for AYAs with cancer and their families. The specific aims of this project include:

1. To extend the currently limited empirical knowledge about the nature of AYA experiences with cancer and its treatment, focusing on psychosocial support and informational needs of AYAs and parent/carers;
   
2. To assess whether AYA cancer patients and their parents/carers report receiving adequate psychosocial support and informational resources from the services that they currently attend for care, and to identify key characteristics of unmet psychosocial support needs.
3. To establish baseline data and an instrument that can be utilized in future evaluation studies to assess the progress of AYA service development in Australia.

Methodology

The study employed a mixed method sequential study of AYAs and their primary caregivers. Stage 1 consisted of interviews with 60 AYAs and matched carer/parents across 3 Australian States.

This informed Stage 2 which was the development and implementation of a national survey at 18 services that provide cancer care to AYAs.

Key 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 AYA Oncol 2016; 5(3):267-677. LINK

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 AYA Oncol  2016; 5(4): 322-9. LINK

Sawyer SM, McNeil R, McCarthy M, Orme L, Thompson K, Drew SE, Dunt D. Unmet need for healthcare services in adolescents and young adults with cancer and their parent carers. Supportive Care in Cancer 2017; 25(7): 2229-2239. LINK

Kosola S, McCarthy MC, McNeil R, Orme L, Drew SE, Sawyer SM. Early Education and Employment Outcomes After Cancer in Adolescents and Young Adults. Journal of Adolescent Oncology. Published online 13 November 2017. LINK

McCarthy M, McNeil R, Drew S, Orme L, Sawyer SM. Information Needs Of Adolescent And Young Adult Cancer Patients and their Parent Carers. Supportive Care and Cancer 2018, 26 (5) 1655-1664. LINK

Translation materials

Education and training

Clinicians working with AYA with cancer can be upskilled by post graduate training in Adolescent and Young Adult Health and Wellbeing. A graduate certificate on AYA Cancer is offered by the University of Melbourne through the Centre for Adolescent Health, Department of Paediatrics.

The Centre for Adolescent Health also offers a free online course for health professionals, and anyone with an interest in young people with cancer.

Funding

Funding was awarded from Cancer Australia (2011-2014), Royal Children’s Hospital Foundation, Victorian State Government Department of Health and Human Services, The ONTrac at Peter Mac Victorian Adolescent & Young Adult Cancer Service, and RedKite.

Key partners

Victorian Youth Cancer Service, Peter MacCallum Hospital, RedKite, Victorian State Government Department of Health and Human Services, Victorian and Tasmanian Youth Cancer Advisory Board.

Key contacts

Principle investigator, Professor Susan Sawyer.