The Keeping Connected project is an ARC Linkage Project investigating identity and education and social connection issues of young people with chronic illness. The aims of the project were to investigate for young people with chronic illness, their own perspectives and identity in relation to education, social relationships, and experiences with education and health professionals; and the ways parents, teachers and health professionals see those needs.

The core of the project was 31 qualitative longitudinal case studies with young people with chronic illnesses to provide new kinds of evidence about them and their relationship to education over time.

This report brings together the project findings, highlighting key themes and issues.

A checklist for adolescent and young adult cancer survivors regarding the physical, emotional and practical concerns they may have to deal with in their life after treatment.

A report of a recent meeting in Austin, Texas of more than 100 medical experts and AYA cancer activists at the Lance Armstrong Foundation's Young Adult Alliance, an umbrella organization of groups devoted to adolescent and young-adult cancer.

The article provides information about the meeting, the latest in treatment and research and links to a number of international adolescent and young adult cancer organisations and resources. 

This information will assist health professionals who work with adolescent and young adult patients, or those considering entering the field, to plan and undertake professional development opportunities that will improve their skills and understanding of this unique area of cancer care and progress their careers.

Cancer Australia is collaborating with CanTeen to develop a National Service Delivery Framework for young Australians affected by cancer.

The draft Adolescent and Young Adults Cancers National Service Delivery Framework concentrates on the specific service delivery needs of adolescents and young adults affected by cancer, to improve outcomes for this group throughout their cancer journey and as they move on with their life.

About 70,000 adolescents and young adults (ages 15-39) are diagnosed with cancer each year in the United States. Learn about the most common cancers in young people. Read how cancer is diagnosed and treated. Find out where to get treatment and what questions to ask about clinical trials. Get tips to cope and check out organizations that serve young people with cancer. See related reports and research.

A searchable registry that lists all clinical trials open to children, adolescents and young adults with cancer or blood disorders currently in progress in Australia.

This report is the first step for NSW in understanding the issues surrounding the care needs of AYA with cancer.

It provides an overview of the current treatment pathways and models of care for AYA with cancer, their access to and participation in clinical trials, palliative and psychosocial support needs and the psychosocial and late-effects for this unique group of cancer patients in NSW and allows further understanding about specific issues surrounding adolescent and young adult (AYA) cancer patients.

A report regarding a workshop held in November 2009 convened by Clinical Oncological Society of Australia (COSA) to bring together the key stakeholders in the Youth Cancer Networks Program (YCNP) to identify opportunties for collaboration on national programs to enhance adolescent and young adult cancer services in Australia. 

A report of an Adolescent and Young Adult (AYA) Cancer Forum held in 2007 with a broad representation of stakeholders and practitioners to develop a shared understanding of the issues and challenges in the treatment and care of adolescents and young adults with cancer, and to agree on the key elements of appropriate models of care is also available 

This guidance has been produced by the Clinical Oncological Society of Australia (COSA) as part of a national Youth Cancer Networks Program project funded by the Australian Government.

The guidance provides evidence-based recommendations and ‘good practice points’ to assist health professionals in effectively and fully discussing with their AYA patients and their families:

• the potential risk of cancer treatments to fertility
• fertility preservation options for AYAs diagnosed with cancer
• potential late effects and the need for assessment and monitoring of reproductive, sexual and endocrine health after cancer treatment ends.

COSA convened a working group of multidisciplinary health professionals with expert knowledge of the areas covered and a patient representative with personal experience to review the available literature and develop the draft guidance.

COSA invites all interested stakeholders to review the draft guidance and provide comments into the wiki format which will be considered in finalising the content and recommendations.

Information and resources including fact sheets and check lists utilised at the Royal Children's Hospital (RCH) in Melbourne to ensure that all young people with chronic illness under their care are engaged in a planned, purposeful transition process that includes a coordinated, successful transfer to adult health services. 

This video series assists Nurses and other health professionals working in primary care settings update their knowledge of adolescent and young adult cancer, specifically as related to the unique physical, emotional and practical needs of this group of patients, and to describe the disparities surrounding adolescent and young adult (AYA) cancer.

Please note: The activity has an expiry date.

Designed through an international curriculum development group, the course is delivered online, allowing students to work at your own pace. Students are introduced to theory and practice about caring for teenagers and young adults with cancer and theory modules are underpinned by a work based learning module that enables students to reflect on and develop their own practice.

Aimed at all of the multidisciplinary team, students are encouraged to work together online, to develop specialist knowledge and learn how the various roles combine to offer patient-based care.

The course covers theories and concepts relating to caring for cancer sufferers in different age groups including transition, normal adolescence and emerging adulthood.

Options around palliative care, acute care and long term follow-up are available for students to mould the course to meet their individual practice needs. The options consist of one compulsory introductory module, one compulsory work based learning module and a choice of module, either related to palliative care or to acute and longer-term care.

For further information, please download the eBrochure in PDF: Cancer Care for Teenagers and Young Adults courses.

This multidisciplinary course was developed by the Centre for Adolescent Health (Royal Children’s Hospital, Melbourne) and the OnTrac @Peter Mac Victorian Adolescent and Young Adult Cancer Service under the guidance of a National Curriculum Advisory Committee comprised of leading adult, paediatric and AYA oncology practitioners from across the country.
The course is offered part time and delivered via a combination of distance education and online learning. Students will explore a range of theoretical, policy, research and practice perspectives and use these insights to develop enhanced strategies for working with young people with cancer and their extended networks.

The learning and assessment approaches used in the course aim to encourage active learning and application of new adolescent health knowledge and skills in 'real world' settings relevant to students’ professional practice.

Enrolment fees apply: AUD$6,512 in 2011. Scholarships are available- please see the website for more details.

Update your knowledge of cancer survivorship, specifically as related to the adolescent and young adult oncology patient.

The learning goal/purpose of this educational activity is to help nurses working in primary care settings update their knowledge of cancer survivorship, specifically as related to the adolescent and young adult oncology patient.

The objectives of this education activity are:

1. Describe late complications of childhood, adolescent, and young adult (AYA) cancer.
2. Discuss the public health impact of late effects and chronic health problems in AYA survivors.
3. Identify the concept of an AYA oncology and survivorship community effort and infrastructure.
4. Identify resources pertinent to the AYA cancer survivor.

Expires April 28, 2012.

The AYACG is an informal interest group for people interested in receiving information and news relating to improving care for adolescents and young adults with cancer. 

A range of podcasts and publications for health professionals, patients and their families regarding the issues and supportive care needs of young adults with cancer and adolescent children who have parents with cancer.

Podcasts include:

• Balancing Cancer and Careers: Living and Working with Cancer
• Young Women with Breast Cancer: Treatment-Specific Choices, Fertility and Careers
• The Importance of Communicating with Your Doctor About Follow-Up Care
• Managing Your Costs of Recovery
• Rediscovering Intimacy in Your Relationships Following Treatment
• Finding Hope and Meaning After Treatment

Publications include:

Booklets:

• Coping with Cancer: Tools to Help You Live
• Helping Children When a Family Member Has Cancer

Fact Sheets:

• "Young Adults with Cancer"
• "Helping Children Understand Cancer: Talking to Your Kids About Your Diagnosis" 
• "Helping the Sibling of the Child with Cancer"
• "Helping Teenagers When a Parent Has Cancer" 

A special interest group convened by Clinical Oncological Society of Australia (COSA) to guide the development of strategies and services to improve outcomes for Adolescents and young adults (AYAs) with cancer in Australia.

NSW Oncology Child and Adolescent Group was established by the Cancer Institute NSW in August 2005, to bring together the state‘s lead cancer clinicians, patients and planners to:

• Develop best-practice methods and pathways for clinical care and review standard treatments for children and adolescents
• Identify data needed to monitor outcomes and to improve cancer outcomes in NSW for children and adolescents
• Promote sub specialised knowledge and education for each type of cancer
• Promote participation in clinical trials.

Key activities of the group include: Improve psychosocial care for adolescent and young adult survivors of childhood cancer - this project aims to collect and collate information about the geographical distribution of NSW Adolescent and Young Adult (AYA) cancers, incidences, outcomes, referral patterns, clinical trial access and participation. Information will be gathered through data analysis, a high-level literature review and clinician on-line survey. Improve medical and psychosocial care for adolescents and young adults (AYA) with cancer - A Research Psychologist will work with two social workers to create a tool and document quality of life concerns for childhood cancer survivors, unmet support service needs, and preferences for support services in NSW.

The Society for Adolescent and Young Adult Oncology (SAYAO) is an international professional organization dedicated to improving adolescent and young adult cancer care through the promotion of interdisciplinary research, education, communication, and collaboration among health professionals.

An edition of Cancer Forum (March 2009), the journal of the Clinical Oncological Society of Australia and The Cancer Council of Australia, with a focus on Adolescent and Young Adult Cancers and associated issues.

A new, international, peer-reviewed, open access journal publishing original research, reports, editorials, reviews and commentaries on all aspects of epidemiology, diagnosis and treatment of cancers in adolescents and young adults.

The Official Journal of Society for Adolescent and Young Adult Oncology (SAYAO),

Journal of Adolescent and Young Adult Oncology (JAYAO) has a very broad mandate. Dedicated to the promotion of interdisciplinary research, education, communication, and collaboration between health professionals in AYA oncology (patients and survivors aged 15 - 39). JAYAO provides a forum for AYA cancer research and practice advances to all professional participants and researchers in AYA cancer care for patients.

The multidisciplinary editorial board and readership includes but is not limited to: pediatric, medical, and surgical oncologists of all types and specialties; oncology nurses and advanced practice staff; psychosocial and supportive care providers including psychiatrists, psychologists, and social workers; translational cancer researchers; and academic and community-based pediatric and adult cancer institutions.

JAYAO has a variety of content, including:

• Original peer-reviewed articles
• Review articles
• Highlights of clinical trials relevant to AYAs
• Case studies with AYA-impact enhancement
• Advocacy group spotlights
• Pharmacology highlights
• Editorials and perspectives
• Provocative roundtable discussions
• News bites

The Journal of Clinical Oncology is the official journal of the American Society for Clinical Oncology.

Volume 28, Issue 32 (November 10, 2010) focuses specifically on issues relating to cancer in Adolescents and Young Adults, containing articles written by leading international experts in this area.

Volume 50, Issue S5 (May 2008) of Pediatric Blood and Cancer journal is a supplement with articles focused on adolescent and young adult cancers, following the SIOP Symposium on Adolescent and Young Adult Oncology.

Articles cover issues including:

• classification of patients
• access to care
• clinical trials
• health promotion
• compliance
• advocacy
• transition of care
• survivorship.

Articles can be downloaded in PDF or full text.

Seminars in Oncology provides current, authoritative, and practical reviews of developments in the diagnosis and management of patients with cancer. Each issue examines a single topic of clinical importance.

This edition focuses on Cancer in Adolescents and Young Adults. Among 20- to 39-year-olds, cancer causes more deaths than any other disease except depression that culminates in suicide. More females in the age group die of cancer than of the next three causes combined. Yet, substantially less attention has been given to young adults than to children and older adults, and the relative improvement in the survival rate in young adults has not kept pace with that achieved in younger or older patients.

Additionally, there is evidence that a substantial proportion of the cancers in young adults have a different biology, and probably etiology/pathogenesis, than that of what appears to be the same cancer in younger or older persons. The challenges of early detection, diagnosis, treatment, and follow-up are therefore likely to be distinctly different than in persons of a different age.

This book, based on an international conference hosted by the Teenage Cancer Trust, addresses the issues surrounding care of the adolescent with cancer more completely than ever before.

Some chapters provide practical information from leading specialists on managing and treating the specific tumours affecting this group whilst others present discussions by psychologists, nurses and other healthcare professionals on the many lifestyle issues that confront teenagers with cancer. Finally and maybe, most importantly, contributions from patients and carers give an insight into what it feels like to have the disease while growing into adulthood.

With its insight into the problems, and guidance on best practice, this book will be welcomed by all professionals and carers who work with young people with cancer.

This textbook, published by Wiley-Blackwell and edited by Daniel Kelly and Faith Gibson, is a practical guide to cancer care in adolescents and young adults for all those involved with the provision of care and support for adolescents and young adults with cancer.
It adopts an integrated inter-professional approach and contains evidence-based contributions from leading professionals in cancer care.

This textbook, edited by Archie W. Bleyer and Ronald Duncan Barr, is a comprehensive book devoted exclusively to cancer in adolescents and young adults. An overview of cancer in this age group, specifically from age 15 to 29 inclusive, including epidemiology and the general differences in prevention, early detection, diagnosis and treatment is presented.

The epidemiology, risk factors/etiology, presenting symptoms and signs, diagnostic workup, treatment, survival outcomes and adverse effects of the 15 most common categories of cancers in the age group are each covered in separate chapters.

The emphasis is on how the cancer in the age group differs in epidemiology, biology, clinical management and outcome from the same cancer in younger and older patients.

Psychosocial Care of Cancer Patients: A Health Professional‘s Guide for What to Say and Do developed out of a desire to support and guide health professionals to provide compassionate, high-level psychosocial care to all those affected by cancer. While this book focuses on the psychosocial care of adults, some content is appropriate to the care of parents, carers and loved ones of cancer patients and survivors.

A practical resource handbook developed by psycho-oncology health professionals for assessing and managing common concerns including:

• Identifying and extending health professionals' existing psychosocial care skills
• Developing new psychosocial care skills
• Identifiying key resources for health professionals for each topic
• Providing clinical case examples throughout that highlight learning objectives
• Addressing frequently overlooked issues such as sexuality and body image.

The textbook also contains photocopiable resource sheets that support the practical application of the content.

This case study recounts the experience of Justin, a 16-year-old male diagnosed with osteosarcoma. This case study aims to facilitate the development of competencies that reflect the role of the Specialist Cancer Nurse (SCN) in delivery of supportive care, including provision of information and education for people affected by osteosarcoma in adolescents and young adults (AYA).

The case study contains four sections: Find the condition early; Have the best treatment and support during active treatment; Have the best treatment and support between and after active treatment; Have the best care at the end of life.

Developed by a small group of experts from the College of Occupational Therapy’s Specialist Section - Children, Young People and Families, and endorsed by the Teenage Cancer Trust, this guidance examines the individual and specific needs of a child or young person with cancer. It covers topics such as occupational therapy intervention, approaches to assessments, and the importance of a holistic, family-centred approach to care. Aimed at occupational therapists working with children or young people with cancer, this book will also be useful reading for service managers and commissioners, as well as those who wish to learn more about best practice for occupational therapists involved in oncology practice.

Health professionals can provide this booklet, aimed at 10-16 year olds, to their adolescent and young adult patients and their families, to provide details about what happens at the end of treatment as well as information about how patients may be feeling at this time.

CanTeen - The Australian Organisation for Young People Living with Cancer - is a national support organisation for 12 - 24 year olds who are living with cancer, and is the only organisation of its kind in Australia. CanTeen's mission is to support, develop and empower young people living with cancer. We do this by providing an Australia-wide peer support network for 12 to 24 year-olds, who include*:

• Patients - young people who have been diagnosed with cancer;
• Siblings & Offspring - young people who have an immediate family member (brother, sister, parent or primary carer) who has been diagnosed with cancer; and
• Bereaved Siblings & Offspring - young people who have had an immediate family member die from cancer.

The mission of CanTeen NZ is to support, develop and empower New Zealand's young people living with cancer and their families through a national support network, and high quality education.

i[2]y – The I'm Too Young For This! Cancer Foundation was founded by and for young adults affected by cancer to bring the cause of 'cancer under 40' to the spotlight and rally a brand new crop of activists to give a much needed voice to this forgotten population.

The mission of I[2]Y is to empower young adults affected by cancer by:
    •  building community
    •  improving quality of life
    •  providing meaningful survivorship.

The website includes patient support literature  and resources for patients that health professionals can order to provide to their AYA patients.

The LIVESTRONG Young Adult Alliance is a coalition of organizations with the goal to improve the survival rates and quality of life for young adults with cancer between the ages of 15 and 40. The Alliance is committed to promoting research and the investigation of the problem, serving as a voice for the issue and promoting effective solutions.

The website provides access to a wide range of resources and information that can be provided to AYA patients and their families.

Myoncofertility.org is a website providing information, multi media tools and links to resources for adolescent and young adult cancer patients and their partners to learn about their fertility preservation options.

There is a link on this site to the Oncofertility Consortium® site, an American interdisciplinary initiative designed to explore the reproductive future of cancer survivors. The website contains information and resources specific to patients, health professionals, researchers and educators that addresses complex health care and quality-of-life issues and options that concern young cancer patients whose fertility may be threatened by their disease or its treatment.

Planet Cancer is supported by LIVESTRONG to provide information and support to adolescents and young adults affected by cancer.

The My Planet social network is the world's largest online community of young adults who have been affected by cancer. It's a place where members find and communicate with other young adults around the world about what's on their minds – from death or fertility issues to dumb things people say.

Planet Cancer also raises awareness about the unique needs and issues of this underserved population by  working with and connecting all organizations involved with young adults in the interests of sharing best practices, expanding the referral network, and avoiding duplication of effort.

A health professional portal is available on the site with information specific to health professionals, though much regards the US context.

Re-Mission™ is a video game developed specifically for adolescents and young adults with cancer.  It was developed by a non profit organisation, HopeLab, that combines rigorous research with innovative solutions to improve the health and quality of life of young people with chronic illness.

In Re-Mission™, players pilot a nanobot named Roxxi as she travels through the bodies of fictional cancer patients destroying cancer cells, battling bacterial infections, and managing side effects associated with cancer and cancer treatment.

Research shows that Re-Mission is an effective tool for young cancer patients, and HopeLab is now developing a new version of the game that builds on these positive results.

Re-Mission is distributed by HopeLab to young people with cancer, their families and caregivers free of charge. As of April 2009, more than 142,000 copies of Re-Mission had been distributed to 81 countries worldwide.

Free copies of the game can be ordered here.

A new Research to Practice Paper by CanTeen (the Australian organisation for young people living with cancer) recommends how those working with young people with cancer can support adolescent and young adult siblings of cancer patients.

Around 1000 young people are diagnosed with cancer each year and on average this will affect approximately 1000 siblings. Research conducted by CanTeen, in conjunction with the University of Sydney found that 57% of siblings aged 12-24 years experience high to very high levels of distress, compared to 9% of young people in the general population. Siblings are often overlooked in service delivery and many of their needs go unmet.

The first Research to Practice Paper, ‘Supporting adolescent and young adult siblings of cancer patients: the family context’ encourages those working with young people with cancer to examine the needs of siblings and outlines recommendations for how they can support to siblings.

SURVIVOR ALERT is an awareness initiative offering information, links to many resources, and recommendations for action for young adult cancer survivors and the health professionals who treat them.

The site provides free access to patient information regarding a wide range of survivorship issues, including follow up care planning and practical matters such as education, employment and health care costs.

A range of resources for health professionals is also provided, including information regarding follow up care plans and links to AYA professional education resources.

A leading UK AYA cancer organisation providing information, peer support and resources for about the symptoms, diagnosis, treatment and psychosocial aspects of cancer for adolescents and young adults with cancer and those who care for them.

The Ulman Cancer Fund (UCF) is a leading voice in the young adult cancer movement; working at a grassroots level to support, educate, connect and empower young adult cancer survivors. 

The UCF site includes many patient support resources including information about education and employment, factual information about AYA cancers and a downloadable patient guide, No Way It Cant Be, A Guidebook for Young Adults Facing Cancer.

The Warwick Foundation supports young adults aged 18 to 40 with cancer, with a particular emphasis on their social and emotional wellbeing.  They provide peer support, age-appropriate information and referrals to appropriate organisations, as well as extra services including luxury getaways to give respite from treatment, special events to spoil and pamper and small wishes.

A free online resource that health professionals can access and provide to their adolescent and young adult cancer patients to provide them with  resources, fact sheets and links to information about AYA specific issues, including relationships, tests and treatments, day to day issues, grief and loss and survivorship.

An online networking forum is also available to registered users who wish to share information and support each other during their cancer journey.

Health professionals, patients and family members can order free resources, including:

• It's Like This...(DVD) How young people and their parents deal with cancer
• Maybe Later Baby - A guide to fertility for young people diagnosed with cancer
• Now What - Dealing with your parent's cancer
• Now What - Dealing with your sibling's cancer
• Now What - Living with the death of your parent or brother or sister from cancer