This guidance has been developed for health professionals involved in the management of adolescents and young adults (AYA) diagnosed with cancer.
If you are an AYA cancer patient, survivor or family member seeking advice about the issues discussed in this guidance, we have provided links to patient information and websites.
Purpose of this guidance
This guidance aims to:
- provide succinct information regarding the age-based psychosocial needs of adolescents and young adults diagnosed with cancer
- provide information about how to meet these needs in adult and/or paediatric treatment settings
- make consensus-based recommendations regarding best practice psychosocial management of AYA cancer patients.
This guidance is applicable to all adolescents and young adults – aged between 15 and 24 years of age – diagnosed with cancer of any type. It acknowledges the importance of personalised assessment and management plans – based on assessment of the patient’s needs, preferences, life stage and maturity and consultation with the multidisciplinary team – and individualised student health support and learning plans for young people who are studying.
The need for practice guidance
There has been growing recognition in recent years of the unique medical, psychosocial and information needs of adolescents and young adults diagnosed with cancer.
To deliver developmentally-appropriate care to AYAs, healthcare professionals need to have an appreciation of how their age and stage of life may impact their distress levels, self-esteem, family dynamics, need for information and communication, peer relationships, self-identity, body image, sexuality, concerns about fertility, perceptions of future, survivorship, existential perspectives and other subjective components of the cancer experience.
The best standard of care for AYA cancer patients is undoubtedly provided by clinicians who have been specifically trained to care for them. However it is recognised that outside of those treating institutions identified as Australia’s lead sites for AYA cancer care, AYA patients represent a small part of the patient profile for most health professionals. As a result, specialist training in adolescent medicine or cancer care may not be a priority for these professionals.
Psychosocial care of AYA patients can be improved by development of core competencies and skills including:
- understanding the developmental stages of normal adolescence
- an awareness of the rights of young people
- understanding issues around consent and ethical dilemmas
- recognising the needs of all family members and partners
- acknowledging age-based existential and spiritual needs
- working with educational institutions and workplaces
- developing AYA focused communication skills
- understanding and responding to non-compliance
- professional self-care, and
- knowledge of basic counselling skills.
These areas are addressed throughout the guidance and, when implemented appropriately, will improve the care provided to these vulnerable patients and may deliver a minimum standard of care. In order to achieve best-practice care, further education and training is strongly recommended.
Statement of intent/disclaimer
This guidance is a general guide to appropriate practice and potential options. Patient management must be personalised in consultation with the patient (with due consideration to their developmental stage and maturity), their caregivers and the multidisciplinary treatment team.
This guidance is intentionally aimed at all members of the interdisciplinary healthcare team involved in the management and care of AYAs with cancer. This includes, but is not limited to, primary care providers, oncologists, nurses, social workers, psychiatrists, psychologists, counsellors, dietitians, occupational therapists, speech therapists and spiritual care providers. As much as possible, the recommendations are broad and appropriate to professionals of all specialties and varying levels of experience in managing AYA patients to encourage a holistic, multidisciplinary approach to AYA patient management.
These recommendations have been developed to complement, not replace, existing guidelines and institutional policies and procedures regarding the psychosocial management and referral of AYA cancer patients. This guidance should not be used as a substitute for clinical judgement or multidisciplinary team planning.
Our aim is to provide guidance that is succinct, simple, practical and evidence-based where possible. However, research in this area is limited and there is insufficient evidence to create clinical practice guidelines in their most formal sense. Thus, unless otherwise indicated, the recommendations are based on consensus about what is good practice and thus described as ‘good practice points’.
The guidance has been developed for Australian practice and is applicable nationally, subject to the need for local protocols between all health professionals involved in AYA cancer management.
This guidance provides information and recommendations about seven key areas:
- Communicating effectively with AYAs diagnosed with cancer
- Supporting AYA relationships
- Addressing physical issues that impact on psychosocial and psychosexual health
- Addressing the psychosocial wellbeing of the patient
- Keeping the young person connected with life outside their cancer treatment
- Providing age-appropriate clinical management
- Addressing the palliative care needs of AYA patients
Development and review of the guidance
This guidance has been produced by the Clinical Oncology Society of Australia (COSA) as part of a national Youth Cancer Networks Program project funded by the Australian Government. The first draft of the guidance was written for COSA by AYA Psychologist Dr Susan Palmer, in consultation with a working group of multidisciplinary health professionals with expert knowledge of the areas covered.
Guidance working group members
Ms Nicole Edwards BEd, Grad Dip Special Ed, Grad Cert Family Therapy, Grad Cert Careers Ed & Development
RCH Education Institute Education & Vocation Teacher
onTrac@PeterMac, Victorian Adolescent & Young Adult Cancer Service
Peter MacCallum Cancer Centre, Melbourne
Ms Kate Melvin BSocWk, BSocPlng
Redkite Adolescent Young Adult Social Worker
Children, Youth and Women's Health Service, Adelaide
Ms Gillian Myles RGN/RSCN BSc Haem
Clinical Nurse Consultant for Adolescent and Young Adults with Cancer
Princess Alexandra Hospital Cancer Service, Brisbane
Dr Michael Osborn MBBS, FRACP, FRCPA
SA/NT AYA Cancer Service
Royal Adelaide Hospital, Adelaide
Dr Susan Palmer PBA, Grad.Dip.Psych, M.Psych, PhD
Consultant AYA Psychologist, Melbourne
Dr Pandora Patterson BSocSc(Hons), PhD, MAPS
National Research and Evaluation Manager
Mr Tim Rogers BA, BSW, MCouns
General Manager, National Services
Dr Felicity Sleeman (MAPS) BBSc(Hons), DPsych (Clinical)
Adolescent and Young Adult Psychologist
onTrac@PeterMac, Victorian Adolescent & Young Adult Cancer Service
Peter MacCallum Cancer Center, Melbourne
Dr Claire Wakefield BPsych, MPH, PhD, AssocMAPS
Program leader, Behavioural Sciences Unit
Centre for Children's Cancer and Blood Disorders, Sydney Children's Hospital
NHMRC Postdoctoral Clinical Research Fellow
School of Women's and Children's Health, Faculty of Medicine, UNSW
Ms Lisa Wiley
Guidance development team
Dr Susan Palmer (Writer – first draft)
Ms Lisa Herron (Writer – revision and additional content)
Ms Ursula Sansom-Daly (Literature review)
PhD/M Psych (Clinical) Candidate
UNSW School of Psychology
The working group followed a process based on the NHMRC recommendations for developing clinical practice guidelines. This process was modified to suit our purpose, format (more succinct) and development process (particularly the use of Wiki software).
A literature review was conducted investigating scientific journal articles published between 2005 and 2011. In an attempt to identify all relevant articles we conducted a general search of the cancer journals Journal of Clinical Oncology, Psychooncology, Cancer, Paediatric Blood Cancer and European Journal of Cancer Care (using the terms ‘adolescent and young adult’ ‘adolescent’ and ‘young adult’; and searched the Journal of Adolescent Health for 'cancer'. Journal articles were reviewed for relevancy using the inclusion criteria of age 15 to 25 years. Articles that were exclusively paediatric (<15 years) or exclusively adult (> average age 30) were excluded. Where studies included AYAs as part of a broader study population we included reports that presented results specific to AYAs and excluded those that presented only aggregated data.
The working group members considered the current literature, including reviews and consensus documents. However the literature is limited, mainly comprising opinion pieces, clinical commentary and case reports. Hence the recommendations in this guidance are based on the consensus of members of the working group and health professionals who contributed to the review of the guidance.
The working group identified several experts in one or more topics in this guidance to review and advise on content and recommendations. We received valuable feedback from:
Mr Morgan Atkinson
Accredited Exercise Physiologist
Centre for Physical Activity in Ageing
Dr Julie Green
Deputy Director and Head of Research
RCH Education Institute
The Royal Children’s Hospital Melbourne
Ms Janine Porter-Steele
Clinical Nurse Manager
Kim Walters Choices Program
Professor Kate White
Professor of Cancer Nursing
Cancer Nursing Research Unit, Royal Prince Alfred Hospital
Sydney Nursing School, The University of Sydney
Ms Sharon Bowering
Cancer Nurse Specialist, Adolescent & Young Adults
SA/NT Youth Cancer Service
Lecturer, Department of Palliative and Supportive Studies
School of Medicine, Finders University South Australia
The draft guidance was then widely disseminated and promoted to target users and other stakeholders during a 30 day public consultation period. The working group reviewed the comments received and we amended and added to the guidance.
COSA will monitor for new evidence related to the areas covered by this guidance and update or amend it as required.
- Palmer, S. Improving care for AYA patients treated within adult hospitals: what can be done right now? Cancer Forum 2009;33(1):22-25 Abstract available at http://www.cancerforum.org.au/Issues/2009/March/Forum/Improving_care_for_AYA_patients.htm.
- Fisher M, Kaufman M. Adolescent inpatient units: a position statement of the Society for Adolescent Medicine. J Adolesc Health 1996 Apr;18(4):307-8 Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/8860796.