CanCeR Forum March 2009 Volume 33 Number 1 FORUM: Cancer in adolescents and young adults Support for research 2009 Tissue banking for cancer clinical trials CanCeR Forum Cancer Forum is produced by Cancer Council Australia for health professionals working in cancer control. It is the official journal of the Clinical Oncological Society of Australia. Editorial Board Chair Bernard W Stewart MSc, PhD, FRACI, Dip Law Board members Letitia Lancaster RN, Onc Cert, BHlth Sc (Nsg), FCN, FRCNA Stephen Della-Fiorentina MBBS (Hons), FRACP Kim Devery RN, BSoc Sc (Hons) Managing Editor Glen Turner Executive Editor Nicole Fulton Editorial Policy The policy of Cancer Forum is to provide a forum for debate and the exchange of medical, scientific, political, social and educational comment related to cancer research, treatment, prevention and control. Cancer Forum invites submissions of original research articles, reports and letters relating to these themes. Authors are advised to read the “Information for contributors” printed on the inside back cover. The views contained in this journal are not necessarily those of the Cancer Council Australia and the Cancer Council does not accept responsibility for the information contained herein. Cancer Forum is published in March, July and November of each year. Cancer Forum is available online at www.cancerforum.org.au Cancer Forum GPO Box 4708 Sydney NSW 2001 Telephone: 02 8063 4100 Facsimile: 02 8063 4101 Email: [email protected] Website: www.cancerforum.org.au Design by Mac Magic Creative Designs Pty Ltd Printed by SOS Print & Media March 2009 Volume 33 Number 1 ISSN 0311-306X CANCER FORUM Contents ■■■ FORUM: Cancer in adolescents and young adults Guest editor: Marianne Phillips Adolescent oncology: orphaned in the system 3 Marianne Phillips Adolescent and young adult (AYA) cancers: distinct biology, different therapy? 4 Archie Bleyer Steps forward: towards a service delivery improvement framework for 11 adolescents and young adults with cancer Susan Hanson, Liam Hunt and Barbara Merz Childhood solid tumours occurring in adolescents and young adults 13 Robin P Corbett Psychosocial assessment for adolescents and young adults with cancer 18 Michele Su-Ming Yeo and Susan M Sawyer Improving care for AYA patients treated within adult hospitals: What can be done right now? 22 Susan Palmer Australian Sarcoma Study Group: development and outlook 25 David Thomas, Sally Whyte, Peter Choong Palliative care for young people with cancer 28 Rob George and Finella Craig ■■■ Award orations Medical Oncology Group of Australia/ Novartis Cancer Achievement Award 34 Ian Olver A fortunate life – Tom Reeve Oration Award 36 Lester Peters ■■■ Reports Support for research 2009 40 COSA Annual Scientific Meeting 2008 55 Australian behavioural research in cancer 56 Tissue banking for cancer clinical trials 59 ■■■ News and announcements 63 ■■■ Book reviews 65 ■■■ Calendar of meetings 72 CancerForum Volume 33 Number 1 March 2009 1 2 CancerForum Volume 33 Number 1 March 2009 CANCER FORUM FORUM Cancer in adolescents and young adults ADOLESCENT ONCOLOGY: ORPHANED IN THE SYSTEM Marianne B Phillips ■ Princess Margaret Hospital for Children, Roberts Road, Perth, Western Australia. Email: [email protected] Snow and Adolescence are the only problems The spectrum of tumours seen in adolescents and young that disappear if you ignore them long enough adults is different from that of childhood, young adults or elderly people. In addition, more young people aged (Earl Wilson 1907). between 15 and 25 years are diagnosed with cancer than all children aged less than 15 years. During the past 25 Adolescents and young adults (AYA) are increasingly years, the incidence of cancer in 15 to 29 year-olds has recognised as a specific, separate population group, deserving of specialised health care provision. Adolescents increased, while the reduction in cancer mortality has aged 10-19 years comprise approximately 8% of the been lower than in younger or older patients. Certainly population in Australia and have an incidence of malignancy the improvement in the five year cancer survival rate from of approximately 150 per million per annum, with cancer the mid 1970s to the early 1990s was significantly lower for adolescents and young adults than the improvements proving to be the fourth leading cause of all deaths in the 2 age group. noted in either younger or older age groups. Whereas it was once a relative advantage to have cancer during the The aim of this volume of Cancer Forum is to increase adolescent and young adult years, patients in this age awareness of the special needs of adolescents and young group now lag behind patients in all other age groups adults and to identify some of the many reasons why with regard to services, outcomes and trial enrolments.3 they should receive specific management appropriate to Currently, access to age-appropriate cancer care varies their age and psychological development, in addition to from region to region across Australia. Adolescents may their specific underlying oncological diagnosis, with the receive cancer care either within a paediatric setting aims of benefiting treatment tolerance, compliance and surrounded by staff, facilities and recreation more suitable importantly, disease outcomes. for infants and young children. Alternatively, it is dispersed The population addressed in this volume is identified as across the multiple facets of adult site-specific cancer complex for many reasons. There is a significant lack service provision, where the average age of patients is of an agreed single definition of the age referred to, nearer the 60 to 70 year-old range. which renders the provision of single uniform national The series of reports in this issue advocate on behalf of all service planning recommendations difficult. Best is the adolescent patients diagnosed with a malignancy, identify recognition that adolescents and young adults aged 13- the logic underpinning the definition of specific services 29 years encompass all those making the transition from and address some of the supporting arguments for childhood to adulthood, physically and psychologically, potential future service and management developments. educationally and financially. There are also, not insignificant terminological challenges. The term ‘adolescent’ is less Currently, fewer patients in the 15 to 29 year age group than ideal, as it has implications for many that tend to are referred to dedicated, comprehensive cancer centres typecast the patient as potentially immature, rebellious than patients in any other age group and almost 80% and often non-compliant. The problems of the ‘young of adolescent patients are not enrolled in clinical trials. It adult’ are similar, with an equal need for candour, tact, appears that the significant difference in outcomes for this respect and privacy, and with their care provided by patient group are influenced in part by their lack of clinical choice in age-appropriate facilities within the treatment trial participation, with published data highlighting older centre. Appropriate psychological and social support is adolescent cancer patients having significantly less access a very important aspect for these patients, as there are to clinical trials than younger patients; a recent report specific recognised psychosocial needs existing within from Australia identified a sharp fall-off in cancer patients the group and adolescents with cancer.1 Adolescents then above the age of 15 years entered on to clinical trials.4 not only have to cope with the recognised physiological This is despite clinical trials for most of the paediatric type and psychological challenges of their age, but also malignancies being open to patients from adolescent and concomitant to their diagnosis, with treatment adverse young adult age-groups and the increasing development effects, relationship isolation, educational disruption and and availability of national disease-specific collaborative employment issues. group trials within the adult sectors, for which patients CancerForum Volume 33 Number 1 March 2009 3 FORUM aged 15 years and over are often eligible. This is particularly successful in addressing access, survival and compliance relevant when the natural history for some disease entities issues. Young people are clear that they want specific in the adolescent group seems to be different to that age-appropriate facilities and support groups, but how observed in children or adults for the same specific tumour this service should be configured will be state and territory types. The current lack of clinical trial enrolment risks the dependent and must vary according to the diverse provision of best available treatment advice for adolescent population and geographical needs across the continent. patients. The development of national trial collaborative Some of the benefits of specific adolescent oncology units groups will go some way to better address outcomes and are clear, however staffing and training for adolescent the understanding of biological characteristics, differences units must be specifically addressed if initiatives of this and prognostic markers for adolescent malignancies. With proper referral patterns to adolescent units equipped sort are to succeed. Who should manage this service is with data managers and strong links to national and open to debate and whether the advantages of a specific international collaborative trial groups, the figures for the adolescent unit always outweigh the