If you are new to cancer care, you will probably want to start with information that will provide you with general knowledge about cancer, its diagnosis, treatment and management. If you have a cancer background but have not worked in the AYA field before, you may wish to develop your understanding of the issues faced by this broad cross section of cancer patients. Gaining experience in these areas will not only assist you to develop your understanding of the needs of your patients but will also assist you to make decisions about your future career path.

Tips

Spend time with Adolescents and Young Adults

It is important to remember that primarily, AYA cancer patients are young people, struggling with all of the same issues as other young adults, as well a diagnosis of cancer, their treatment and the uncertainty of their futures further complicating things for them. Spending some time with adolescents and young adults, particularly those with cancer, can help you decide whether this area might be for you. This can be possible through a hospital rotation, a short term placement or a formal site visit in an adolescent ward; by arranging informal visits with another health professional working in the area or volunteering with a AYA patient support organisation, school or youth organisation.

"It is about finding those clinicians who have an interest in working with young people and training them to understand the specific issues of the developmental stage, including the medical issues. If you are coming from a generalist oncology role, doing some courses through the Centre for Adolescent Health and combining your knowledge of oncology with your learning about young people is a really good approach. " (Susan)

"I know it sounds obvious, but I would say that you have to like young people to work in this area. You would be surprised how many people get a bit scared by them until they have the realization that they are actually human! I have always loved a quote from Heidi Adams from Planet Cancer who now works for LIVESTRONG: "Just because we're young, don't forget we're adults; just because we're adults, don't forget we're young". And I think that really sums it up - they are a unique group - they are young but they are getting older, taking on new roles and it is such a time of change for them." (Claire T)

"I started work with young women in a sexual assault support service, working with young homeless people and with women who had experienced domestic violence. I moved to the UK and worked in child protection with young people who were at risk of social isolation. When I returned to Australia I had a complete change of direction by starting work as an oncology social worker at the RBWH in July 2009. I loved the work in cancer care; however I missed my work with young people. When this position became available to work in both cancer care and with young people in August this year, I felt that it would be not only an opportunity to combine my skill base, but also my ideal job!" (Claire M)

Know the specific issues facing AYA cancer patients

There are many short and long term health, physiological, social, psychological and practical issues that may affect a young adult with cancer, both during and after their treatment. Health care professionals need to be acutely aware of the issues and understand the impact they may have on their patients, their health and state of mind and their attitude towards their care.

Age specific care needs

"To understand AYA with cancer it is first absolutely necessary to understand this age group; developmentally, physically and psychosocially. Without a good understanding of this development stage and the issues which affect healthy young people, it is impossible to address the needs of AYA patients. Issues such as: relationship-building, peers, education and work, body image, self-concept and identity formation, negotiating independence, sexuality, future fertility - all are experienced by AYA in sickness and in health." (Danielle)

"The key issues in AYA care are the need for age-appropriate services, facilities and psychosocial support as their cancer diagnosis occurs at a time of great physical; emotional and psychological change regardless of the cancer. It should be recognised that these patients are neither children nor adults. They have different tumour types with potentially worse outcomes unless treated & supported appropriately - things like compliance may be an issue that needs to be addressed. There are also the concerns of late effects and the need for good follow-up planning and care." (Marianne)

"Adolescents and young adults are the group who so often slip through the gap between the paediatric and adult health care systems, and yet there are so many very specific issues that apply to them. It is all about speaking to them - communication skills at the most basic level are so important, and the willingness to try to communicate with them, gaining some understanding around the challenges and difficulties that are specific to this age group. For anyone working in the area, it is important to remember that their best treatment options might not be the most obvious ones. So even if they are a young adult, a paediatric protocol might be the best treatment, even though their personal circumstances are so different to that of a child. There is a good chance as an AYA that they won't be in a clinical trial, that there are going to issues around adherence and mostly, all of that is related to their lives and remembering that they are a young person first and foremost. We need to look at what is going on for them at this stage in their life and how we can help facilitate some level of "normal" even while they are being treated. They are probably trying to study; they may worry how their friends will perceive them more than they worry about cancer. So it is really important to connect them with all the allied health workers; tying them into social workers and psychologists. " (Claire T)

Fertility Preservation

"Children's hospitals often don't talk about fertility with the young person directly and adult hospitals sometimes forget that they are dealing with a young person and all that that entails. And really, can you think of anything more embarrassing or traumatic if you are a young man and have to deal with your mother going with you to do a sperm donation? From our end, we deal with so many young people who are never spoken to about their fertility options and it is years later that they are coming to grips with that. Something we have recently done is developed a resource called "Maybe Later Baby". It's a great resource because it has two parts and you can flip it depending on your circumstances. So on one side if you are about to go into treatment it gives you your options and on the other if you had treatment and didn't know/have options, it tells you what they are now. It is available free of charge to any young person or health professional in hard copy, and we really encourage people to talk through it with a health professional. The Teenage Cancer Trust in the UK is so impressed with it that they are going to reproduce it over there." (Claire T)

Transition to adult care

"Transition issues between paediatic and adult care are interesting because really, each patient is so individual. I mean, take a look at one 15 year old and then at another, and they could be at entirely different life stages. And if you've been treated at a paediatric hospital and know your treatment team for so long, how scary must it be to have to go to another hospital with different clinicians simply because you are a little older? Thought has to be given to easing this transition." (Claire T)

Defining the age group

"Neither the paediatric nor adult sectors manage AYA care specifically. You are always working against the beliefs of other clinicians who assume they can do it just as well even though they are specialists with working with a predominantly older or a predominantly younger population." (Susan)

"It is really interesting as to what the definition of Adolescent and Young Adult is. Internationally, the starting point is often considered to be 12, and in the US it goes up to the age of 39. Those numbers came out of the Progress Review Group which sent out recommendations a few years ago. It is not entirely agreed. At CanTeen we are probably considered unusual for looking at the younger end of that, and we don't go right into the older end, whereas a lot of countries look at people in their mid to late thirties. And really, from 12 into your late twenties and thirties are very different stages - I mean, we work with young people undergoing treatment who have children of their own. We've got a 23 year old with cancer who has 2 children. And in contrast we have 25 year olds who still live at home with their parents. It is extraordinary and you really can't generalize, the AYA tag has to cover such a broad range of lived experiences." (Claire T)

Psychosocial and survivorship issues

"The Australian psychosocial screening and assessment measures for AYA patients were developed as part of the Youth Cancer Network Program with the collaboration of CanTeen and OnTrac@PeterMac. As a federally funded project and has been embraced by the clinicians. It is based around the concept that you understand the young person as an individual first and the impact of the disease second, not the other way around. " (Susan)

"Often, health professionals don't think to have those conversations with young people, to find out about their emotional and psycho-social experiences and how they are impacting on them. The day that they walk out of hospital isn't the day that things finish." (Claire T)

Social lives, independence and developmental milestones

"AYA patients are often moving out of home, they're may be dealing with exams or employers. Especially if you are in a clinical role, it is so important to understand what is going on for them at different developmental stages. If a teenager doesn't want to adhere to their chemo regime, it may be related to the fact that they want to go to their Year 12 formal and drink, or they want to have sex with their boyfriend, things like that which are entirely normal for any AYA but perhaps that health professionals haven't thought about in relation to their young adult patients. There are people who have lived out of home for years but have to move home at 28 during treatment which can be devastating. At this stage of life, friends are usually the most important in their lives, so understanding that and trying to keep things normal for them is important." (Claire T)

Develop your communication skills and talk to young people

The ability and desire to talk with young people and to listen to them are key skills for all people working in AYA care. Adolescents and young adults are generally seeking independence and want information and to be involved decisions regarding their treatment and care. Unlike children, they are able to clearly express their thoughts, needs, fears, joys and questions when given the opportunity to speak and feel heard, and will assist you to know how to help and support them best. You may wish to develop your communication skills in order to speak to young people about their medical care at an age appropriate level, or to learn techniques for delivering bad news or difficult information.

"Communication skills are essential to learn how to work and interact effectively with the AYA population, and to understand how cancer impact's psychosocially on young people and their families, their developmental stages and needs." (Claire M)

"Education regarding the communication skills needed for this age group is improving and it is increasingly regarded as part of the skill base required for working with AYA's. Engaging the young person and gaining their trust is another aspect of clinical care that can be more complex with this age group - as they come with a range of issues that you need to understand, support and nurture through their treatment, not just the treatment based stuff, and their egocentric nature means that they don't necessarily understand the long term implications of what they are going through so compliance can be tricky." (Susan)

"At the most basic level, it is taking it back to how these young people are communicated with. So often, if they are a bit younger, people only talk to their parents; or if they are a bit older they might talk to them but don't really tailor the language to the understanding of the young person. CanTeen is just bringing out a book for patients - similar to the ones we've already produced for siblings and young people whose parents have cancer. There will be two versions - one for younger and one for an older aged patient, and basically, they will be an introductory guide to cancer, a really practical guide to having cancer, but something they can understand because they are written in their kind of language. It will help with answers to stuff like: "What's an oncologist?", "Will treatment hurt?" But also cover the emotional and practical sides of cancer, like: "How do I tell my friends?", "How do I get special consideration on exams?" and a list of questions to ask your doctor. Things they need to know but often aren't told." (Claire T)

Self directed learning

Workplace learning is key to becoming aware of the issues facing cancer patients, but driving your own learning is also important. All health professionals working in the area of AYA cancer care need to have an understanding of cancer, including the disease processes, staging, and the different types of cancer treatments and their effects in the AYA cancer patient group. You may like to undertake a short course, workshop or online module, including many resources available in the Fundamentals of Oncology pages in the Find section of Cancer Learning, to broaden your knowledge of the anatomy, biology and pathology of cancer. In addition to cancer expertise, it is important to have a good understanding of medical and clinical research terminology to readily communicate with other clinicians. Sources of information may include cancer text books and websites and electronic data bases such as Medline, CINAHL, and Ovid can also provide journal articles and information on current research and latest treatments.

"If you are coming from a health or community role working with young people and you want to get into oncology, there are no short courses I know of that just cover "What is oncology?" which I think would be very helpful for assisting with all of the foundation knowledge required when working in oncology. I think this is particularly relevant for allied health staff where having an interest in young people is more important than an interest or knowledge in oncology. If you find a really good health professional - be that a social worker, psychologist, physiotherapist or someone involved in education - who has an interest in young people, it would be helpful if the learning of the oncology information could be fast tracked through a short course. However, I still don't think there is, which is where the mentoring and the peer support come in, though they are not really formalised either." (Susan)

"There is a new postgraduate course that has been developed by the University of Melbourne, and CanTeen is funding 20 scholarships for that. We're really excited about this course. I mean, there is some great online stuff around, like on your site you link to the Texas Nurses Group and the EdCaN AYA case study, but there is nothing else of that comprehensive and consistent nature that will really help Australian health professionals to develop their skills." (Claire T)

Learn from others

The example and advice of your colleagues, patients and others around you who have experience and knowledge in the area of AYA cancer care can be fantastic teachers, so watch and learn. Talk to people who inspire you about their experiences, ask what they have found helpful and be creative in approaches to your learning. Build your experience and diversify your skills. Seek and take advantage of opportunities as they arise. Make your interest known within your workplace and to other health professionals, offer to work in a support role with a more senior professional, take up a higher level relief position, or seek opportunities outside your current workplace. There are also several key documents available, such as the AYA framework developed by Peter Mac and the upcoming COSA AYA psychosocial guidelines, that have been written by experts and can inform and guide your practice.

"It is important professionals have an exposure to adolescent oncology and other adolescent fields of medicine during their training if possible, which might require them to undertake an elective at a site with adolescent facilities. They would probably also benefit from spending time in paediatric and adult oncology settings which provide care to some adolescents too." (Marianne)

"Talk to others already working in the field to learn as much from their experiences as possible." (Samantha)

"When I began in the area, oncology specific qualifications didn't exist. What I have learned, I picked up along the way. It has now been 13 years that I have been working in the area and I continue to learn be attending conferences and workshops I have had to do a lot of self directed learning. Back in the beginning, it was learning from peers - including those interstate and overseas. At the time, the UK was very much ahead of us in terms of clinical care, and the US was further ahead in research and policy. So it was about targeting those people who were a little bit ahead of Australia in certain areas and learning as much as you could from them. That is where a lot of my learning came from, and from actually writing articles myself - which forces you to do the reading and research you might not find the time to do when you have a full clinical load. " (Susan)

"Having worked in other non profits, CanTeen is a fascinating one to work in - having such an intersection with the medical community. There are still the leading international lights, like Archie Bleyer and Karen Allbritton, who are really inspiring and I have been fortunate to spend time with both of them, and there are also some local people who are beginning to stand out internationally for their work in the area; but there are definitely some unsung heroes. There is a nurse practitioner who works at RPA and another at the Sydney Children's Hospital who have been volunteering with CanTeen for 22 and 13 years respectively. They are both very passionate about this age group, so just being around them, you learn a lot about what is going on. Neither would claim to be an expert in AYA care, but they really stands out for their ability to connect with people in this age group; they have a great understanding about the issues AYAs face." (Claire T)

Join special interest groups and mailing lists

Involvement in local, state-based, national or international networks or special interest groups can be a valuable source of information, networking and ongoing learning and introduce you to the key people in the field. Sign up to group email lists and attend meetings in order to find out about upcoming opportunities, become familiar with the key people working in the area, stay in the loop, learn more about the current issues facing AYA cancer patients and be updated about the continual developments in this emerging area of cancer care.

"Informally, there are peer networks. Articles and relevant information can be shared amongst peers. When onTrac@PeterMac was in its infancy, we really focused on shared learning as we were all trying to get our heads around what was going on. When we started, in 2004, there was really nothing available to us. Private funding had been committed to develop the service based on the lobbying of Dr Marie Sexton because she had recognised the gap in services through her own clinical work , but there really was nothing there - no research, no training, and no other AYA teams in Australia." (Susan)

"Most of the list servs and email newsletters and things are generally freely available you just need to go onto the websites and sign up; usually you don't have to be a member. The LIVESTRONG Young Adult Alliance sends out a monthly newsletter and keeps people up to date with what is happening. Some of it you have to do yourself, for the Australian things, it is often a matter of making sure you are on the email lists or checking the various websites such as COSA to see what is going on, but people do share information." (Claire T)

Go to workshops and seminars

Workshops, in-service days and seminars are excellent for time poor health professionals, as they are generally intensive, targeted, practical and relatively cheap. They can offer a great introduction to the area of AYA cancer care; act as a refresher course for previously learned skills or provide the opportunity to develop specific knowledge regarding issues facing this patient population in a short period of time, and allow you to meet other people working in the area.

"As someone new to the area of cancer care, and AYA cancer in particular, I tried to rapidly increase my understanding of these areas by attending every AYA cancer care lecture, forum and conference I could, talking to those with experience in field and gleaning as much as possible from them, and of course, a lot of research and reading (texts, journal articles, patient blogs, documentaries)." (Samantha)

"I undertake a lot of workshops and seminars, and I have been lucky enough to have a lot of international conference opportunities as well. CanTeen provides internal training for working with AYAs, particularly when you start. We have people on staff, several who have a nursing or medical background, who have put together various training materials to introduce you to adolescent and young adult cancers particularly. Through my previous role focusing on breast cancer I had learned a lot about cancer and had attended a lot of different national conferences and I have continued those. I also attend training or professional development days provided by other organisations - Peter Mac, for example, has held very imformative Adolescent and Young Adult professional days." (Claire T)

"I have always tried to spend time at workshops, conferences and seminars, both as an attendee, a speaker and provider, to ensure broad experience, up to date knowledge and, importantly, to facilitate networking and personal support." (Marianne)

Find a mentor

A mentor is generally an experienced colleague who can provide you with individual advice and support. Mentors can be clinicians or allied health professionals working in AYA cancer care, or others with experience and knowledge of the adolescents and young adult age group. Mentors can be a great source of feedback and guidance - they can recommend ways to develop your skills, as well as answer clinical, service-related and personal questions that you may have. Talk to senior colleagues and other allied health professionals in your work place, contact professional organisations, universities and networks.

"In Australia, we are fortunate to have a strong group of core clinicians in the area who play a really important mentoring role for new people coming in to the area. When I started in this area, I was fortunate enough to be working in a team with Kate Thompson, a social worker who is just as passionate about AYA oncology as I am, and we provided constant peer support for each other - learning from each other and guiding each other through the early years. Over time, I have been able to develop strong links with many clinicians both in Australia and overseas who I can turn to when I have questions or come across challenging situations - but it is still a small group. So, while it is important to have the peer support, it is also important to have trust in your own experience and, when people are turning to you, have trust in yourself that you know some of the answers." (Susan)

"Identifying a mentor is invaluable. I have been helped during my career by leaders in this area including Archie Bleyer, Ronnie Barr, David Thomas, and through working on committees and interest groups." (Marianne)

"I have certainly had the beneficial experience of lots of other people offering their advice and mentoring me. I am not a clinician but health professionals like Professor Karen Allbritton and Professor Archie Bleyer, through to other support workers like Heidi Adams, who is an international advocate and former AYA patient, have always been really open and generous. If they see that someone is passionate and interested in this area, they will get them involved. And I have seen some great mentoring go on among clinicians as well." (Claire T)

If you are considering working in an AYA cancer-specific role, you will benefit from building your cancer-related knowledge and practice-based experience. This may involve attending courses and conferences, undertaking further study, getting involved in professional networks and groups, and pursuing opportunities to be involved in AYA cancer care outside of your workplace.

Tips

Build your professional network

Being a member of a professional organisation, groups and other networks groups raises your profile and provides you with access to a wide range of information, contacts and opportunities. Membership benefits can include free or subsidised access to members' only online content, newsletters, professional development opportunities, journal subscriptions, events and conferences.

"I have been lucky to have spent time and made connections with many people. We have developed quite a good international network and all keep each other informed of what is going on, both formally and informally. On some levels, it is still a relatively small community, so people will often say, "Hey are you going to this conference?" Or things are announced and sent out via the networks, so link in with them. For example, the first thing that was put around for the new Adolescent and Young Adult Cancer journal that is about to be launched by Children's Oncology and Haematology Group, CHOG, was sent out through the LIVESTRONG Youth Alliance network." (Claire T)

"I am employed by the University of Melbourne but work out of the Centre for Adolescent Health (Royal Children's Hospital), where I am responsible for the development of a new postgraduate certificate in AYA cancer care. I do so in collaboration with a National Curriculum Advisory Committee comprised of AYA cancer care clinicians from around the country and in conjunction with my immediate project team, comprised of staff from the both the Centre and onTrac@PeterMac." (Samantha)

"Everyone who works with AYA's generally is very passionate. I have strong links with other workers in the AYA field... and it helps to join available networks - the Oncology Social Work Association, colleagues from the RBWH, attend meetings and build relationships with other workers in AYA centres. Finding others with an interest or who work with AYAs is a way of staying up to date with what training and PD opportunities are out there. It is also important to have an understanding of the background to AYA services and worth becoming well acquainted with relevant documents like the National Service Delivery Framework." (Claire M)

Attend conferences, meetings and events

Attendance at relevant state-based, national or international conferences and events - both cancer and adolescent themed - can be helpful for building your knowledge, accessing presentations by experts about the latest evidence and treatments, networking with other cancer professionals and raising the profile of AYA cancer care. Take a close look at event programs, as organisations are increasing including an AYA specific stream in their schedules. Also attend lectures regarding complimentary areas of cancer care you may wish to learn more about include survivorship, psychosocial care, fertility preservation and palliative care approaches. You may need to look for funding to undertake particular educational initiatives.

"Some of the events I have attended include Cancer Voices Queensland Consumer Training Workshop 2007; OnTrac @ Peter Mac AYA Education Day 2008; the 5th International Conference on Teenage and Young Adult Cancer Medicine, London, UK in 2008, LIVESTRONG Young Adult Alliance Conference, Texas, US in 2008, Queensland Health AYA Workshop 2009; Queensland Health AYA Conference 2010, OnTrac @ Peter Mac Professional Education Forum 2010,and COSA Conferences 2007 - 2010, and I plan to attend the 7th International Conference on Teenage and Young Adult Cancer Medicine, London, UK in 2012." (Danielle)

"Attend conferences, because they will often have either a day or a session focusing on AYA cancer, and get out and meet people because once you've met a few people working in the area, it really opens up a lot of doors to other interesting people. LIVESTRONG have a Young Adult Alliance, which actually formed five years ago and CanTeen is one of the founding charter members of it. All the different international organizations who are passionate about young adult cancer are involved, and they have an annual meeting, which I have just been to in the US." (Claire T)

Develop expertise

Once you have a general understanding of cancer and the issues facing adolescent and young adult patients, the next step is to build detailed, specific knowledge. Cancers in AYA patients are often biologically different to tumours in other age groups. A range of sources of information are available including websites, journals, textbooks, and interactive CD-ROMs. Clinical practice guidelines are also available for a range of cancer types.

"When OnTrac@PeterMac was first developed, it was recognized that the provision of best-practice AYA care involved both medical oncology and psycho-oncology expertise. At the time, part of developing this expertise involved travelling overseas to find out what was going on in other countries and bringing that information and back and incorporating it into the onTrac program. That was where a lot of the consultation with the overseas experts began and we were then able to build on their ideas." (Susan)

"I do find my PhD in the education of young people does help me. Especially in an organization like CanTeen where it is all about working with young people, looking at how to involve them and encourage participation; I think those principles have something to add to this area too. How do you involve the young person in their treatment, how do you inform them so they can make choices and empower them? It can be one time in their life where all the power feels like it has been taken off them, so if we can give them that sense of control back, it is a really great thing. Talking about fertility would be my other big one - it is an area that needs so much improvement in the way it is handled with this age group.. Get some background and understanding around that, whether you are a clinician or allied health worker, it is such a key thing" (Claire T)

Gain postgraduate qualifications

Postgraduate qualifications, such as a graduate certificate or diploma in areas such as AYA cancer nursing, psychology, adolescent development, education or public health can be a valuable way to find out more about particular areas of AYA cancer or issues specific to young adults, put you in touch with academics and other students interested in similar issues and help you in your career progression. A Masters degree can be a valuable way to develop specialist skills in a specific area of interest to you, and may be an entry point into further research or teaching opportunities. You may need to look for funding to undertake particular educational initiatives.

"There are currently only two programs in the world offering specialised education and training around AYA cancer care, with the Australian one having accepted its first cohort in February 2011- those seriously considering a specialisation in AYA cancer care should regard such postgraduate training as a key component of their professional development strategy." (Samantha)

"In 2007, I was awarded one of five CanTeen scholarships to study for an online Postgraduate Certificate in Teenage and Young Adult Cancer Care run by the Coventry University, UK. This was the first course of this kind in the world, and run for the first time that year, so I was quite fortunate to be able to be involved." (Danielle)

"I definitely have plans for the further training and professional development. I am interested in the new AYA cancer care postgraduate course at the University of Melbourne which is available from next year." (Claire M)

"There is some good stuff coming up now for people entering the AYA field. There is the new certificate in adolescent oncology here at Melbourne University and the overseas distance course at Coventry." (Susan)

Apply for funding to support your development

There are many available scholarships, grants and funding available to professionals who wish to develop their knowledge, continue their education and undertake opportunities to travel and experience AYA care in other parts of the world. Contact professional bodies and consumer organisations to see if they have any funding programs that you can apply for to support your professional and career development.

"I was awarded a CanTeen Scholarship in 2007 to study for a Postgraduate Certificate in Teenage and Young Adult Cancer at Coventry University, UK; a Leukaemia Foundation Travel Grant to visit and review Teenage Cancer Units around the UK in 2008; and a LIVESTRONG Travel Grant to attend the 2008 LIVESTRONG Young Adult Alliance Conference." (Danielle)

"I received a Churchill Fellowship in 2007 to travel overseas and spent 6 weeks shadowing AYA teams in the UK and the USA. That was a great learning experience. Nowadays, my learning comes from my interactions with colleagues - if there is a specific issue that I need to resolve or I am looking for guidance on, I can contact peers in Australia or overseas and tap into their clinical expertise." (Susan)

"There is the Coventry University course that is offered online that CanTeen has previously provided scholarships for. We're not funding it this year because there is a new postgraduate course that has been developed by the University of Melbourne and the Centre for Adolescent Health, so we are swapping the scholarship to this local course and CanTeen is funding 20 scholarships for it next year." (Claire T)

Ensure your own self care

Working with young adult patients can be very rewarding, but at times, also emotionally and psychologically draining. AYA cancers have high mortality rates and it can be very difficult to care for a young person who is dying, as well as support their family and friends. Structures that that provide support to health care professionals including close supervision, hospital-based pastoral care, opportunities for debriefing and defined professional/patient boundaries are essential to ensure the self care of all those who work in cancer care. For more information about taking care of your work/life balance and personal health, see the Work/Life Balance page on Cancer Learning.

"AYA patients die. Supporting a young person who is dying is very difficult particularly because their young age can bring up many issues for the clinicians and health professionals working with them. A lot of people don't come in to the area prepared for the death rates and the complex family relationships, and all the other things that young people bring to cancer journey. It is a very draining and difficult experience for the teams working with them and it can be difficult to retain staff in this area as they are not receiving appropriate support and guidance. Another complexity concerns the age of the clinicians who are attracted to working with this age group - often these professionals are young themselves and there can be a very small age gap between the patient and the clinician. This can lead to blurred boundaries. It is not uncommon for the young person to feel isolated and to want to bring the clinicians into their social circle and unless the clinicians are well mentored and supported, that can become extremely messy and difficult to manage...I think there could be more active peer support for nurses at the coal face' to manage those kinds of boundary issues." (Susan)

"To work in AYA care, you need patience, flexibility, a sense of humour and the ability to negotiate and communicate effectively with the patient and family. But you also need professionalism - know your boundaries. Young patients may want to be your friends - but it is important to make limits and stick to them (such as no mobile calls/texts after 5pm, no Facebook interaction etc) to ensure that your own self-care and professionalism is maintained. " (Danielle)

If you are working at or considering moving into an advanced role in AYA cancer care, your continuing education needs may expand to include other areas of professional development that augment your AYA practice, such as human resource management, supervisory and budgetary and research skills . As a leader in the growing AYA cancer area, you may wish to seek opportunities to use your knowledge and experience to further develop the field, produce research and learning resources or undertake roles and activities that enhance the prospects for other professionals working in AYA cancer care.

Tips

Become an advocate

Adolescents and young adults have previously been an unidentified, voiceless population in the health care system. However, due to the efforts of many advocates, the profile of AYA cancer has risen in recent years, leading to international recognition of the unique care needs of this patient population. AYA cancer patients require more champions to ensure that the disparity in their care, their specific needs and the complex issues they face continue to be recognised and feature on the government and health care agendas so that their outcomes and experiences continue to improve.

"I was diagnosed with lymphoma in 2002 at aged 22 years. After being pronounced in complete remission in 2004, and finishing my Masters degree in International Relations, I realised my focus has shifted and I was passionate about assisting other young patients with cancer. In 2005 I was featured on ABC television's Australian Story' which raised my profile considerably, and as a result I was invited to be involved with a number of advocacy projects and campaigns. So in 2006 I translated my personal experience into the professional sphere and was employed by the Leukaemia Foundation to research and develop a national education and support program for young adults with blood cancer. Alongside this, I was heavily involved with a number of advocacy groups and various projects at CanTeen and other organisations. In 2007, I was invited onto the Advisory Committee of Cancer Voices Queensland to represent AYA and advise on the best way to support this demographic." (Danielle)

"The survival rates for this age group are the poorest - they are not increasing at the rates that they are for others, so why is that happening? Is it because of the biology, or because of some of the systemic problems? I think it is very important to have an advocate for the young person in the hospital - I really think where the breast cancer world has got it right is having the specialist breast care nurses, I am a huge fan of those, and think we really need to do the equivalent for a young person. If every time someone is diagnosed, we could have someone to steer them through the system, (which can be a really odd system for them). If we could have the benefit of multidisciplinary teams who work across the paediatric and adult care, that would be groundbreaking in my mind and so important for this group." (Claire T)

Advance the field

AYA cancer is an emerging and continually developing area. You can use your knowledge and experience to define the role of the health professionals in the management of young adult cancer patients and pioneer new strategies to involve them in their own care. You may wish to take on principal roles in organisations or on committees; assist in the development of policies, protocols, curriculums and frameworks that shape the education, training of AYA professionals and set a consistent standard in the quality and delivery of care to young adult cancer patients.

"At the moment I am developing the online psychosocial care guidelines for COSA, which will be accessible to all health professionals having contact with young people - so from GPs, to school counsellors, to community palliative care workers. Anyone who might come across a young cancer patient but doesn't know how best to manage their care can get online and access clinical guidance that has been developed by a group of Australian AYA oncology experts . The project has just begun and its expected completion date is June 2011. Prior to that, I coordinated the development of the Australian Psychosocial Assessment and Care Manual for the YCNP and in 2007 while at OnTrac@PeterMac I coordinated the development of a framework for working with young people with cancer with David Thomas." (Susan)

"I imagine that paediatric cancer care 30 years ago was what AYA cancer care is today; in its infancy. There is still a long road ahead before we understand how to best care for this patient group, and how best to deliver these services. At this point in time, those wishing to be involved in AYA cancer care need to be aware that they are signing up for this process of development. The AYA professional community is very proactive in pushing this agenda, and we have come a long way in a short amount of time, but we have a long way to go. A career in AYA cancer care at this stage means that there is a great deal of "pro-bono" work required; being involved in advisory committees, development teams and the like. I think it's important that young professionals looking to advance their career in AYA oncology are aware of this requirement for proactive involvement, potentially on a national scale." (Danielle)

"I moved from Great Ormond Street, London to Cardiff, Wales at the end of 1993 and established the adolescent oncology facility for Wales. In 1998 I moved to Perth, Western Australia where I am now a Consultant Paediatric & Adolescent Oncologist and Palliative Care Specialist at Princess Margaret Hospital for Children Perth - the only tertiary paediatric institution in Western Australia. The paediatric haematology/oncology department has specific separate inpatient facilities for adolescents with cancer aged up to 17 years and still at school; the first specific facility for this age group in Australia. I was the chair of the UK Children's Cancer Study Group adolescent oncology working group from 1996- 2007 and a member North American Children's Oncology Group AYA steering committee and working groups 1999- 2007. I am a member of both the COSA AYA Working Group and Cancer Australia AYA Advisory Group. Currently I am also the Lead Clinician for WA Adolescent Tumour Collaborative within the State Cancer & Palliative Care Network, progressing a State Model of Care for AYA oncology and have facilitated creation of specific adolescent/young adult age-appropriate ambulatory and same day facilities at the major adult cancer centre." (Marianne)

"I think it is a good time to get on board - it is such an exciting and emerging field at the moment, there is a lot of opportunity to get involved and actually make a real difference that perhaps may be harder to find in more established fields. If you join now, you are really coming in at the ground level and there are so many learning opportunities - whether it is in fertility or clinical trials or survivorship and even palliative care - all of these are still quite new and emerging fields, and there are passionate people working in the area, so it is really an exciting time and AYA care is a good place to be." (Claire T)

Undertake research

Involvement in practice-based research, projects and steering committees can help build your expertise, or you may decide to undertake a research-based university qualification, such as a PhD. As you build your skills, you may have the opportunity to take a more active role in planning research activities and applying for grants. As part of your role you may identify gaps in knowledge and be in a position to develop research projects aimed at addressing these gaps. You could lead your own project at a local, regional, state, national or international level.

"There is more awareness of the need for collaborative group working, the development of new clinical trials and for health professionals to encourage their AYA patients to enroll in them so that we can learn more about the biology of the cancers in this age group." (Marianne)

"One of the committees I have been a member of since 2007 is the Queensland Health AYA Working Party whose remit was to identify the unique needs of AYA patients in Qld and look at the most appropriate model of care to address these needs. In 2009, I was invited by the chair of the AYA Working Party to be the AYA Senior Project Officer to research and develop a new model of specialised care for this group. I was employed by QLD Health in March 2009 and my role has since evolved from specific project work, to coordinating the statewide development of Qld AYA Cancer Services. In the future, I plan to undertake a PhD research project in the area of AYA survivorship." (Danielle)

"Research is key - we have had an internal research team at CanTeen for almost 5 years who are very well respected and connected and belong to a lot of the various AYA groups that exist around the world and collaborate with them. ." (Claire T)

"I have commenced a literature review of the evidence available in AYA cancer and I undertake research as part of my learning and professional development." (Claire M)

Publish journal articles and present research at conferences

Giving presentations at national and international conferences can help you learn while also sharing knowledge with others and keeping up to date with current knowledge. Being involved in the organising committees for conferences can be rewarding and help you develop new networks.

"Myself and my team recently presented 'Decoding the Young Adult's Cancer Experience' at the 34th Oncology Nurses Group Conference in Brisbane, presented by Cancer Council Queensland, discussing the impact of cancer on young people and their lives." (Claire M)

"I have been fortunate enough to gain significant experience presenting at various conferences, such as COSA, HSANZ and others. In 2008, I was invited to speak at the 5th International Conference on Teenage and young Adult Medicine in London, UK on the topic of "Image and Sexuality". Later that year, I was invited to present my work at the LIVESTRONG Young Adult Alliance Conference in Austin, Texas. " (Danielle)

"What I have learned, I have picked up along the way. Nowadays there is research and information available and leaders in this area - like Archie Bleyer, David Thomas, Sue Morgan, Brad Zebrack - are prolific researchers and writers and are focused on sharing their knowledge. " (Susan)

"I really like to spend time reading journals when I get a chance. The Journal of Clinical Oncology has just released a special AYA edition and I was lucky enough to be invited to write an article in that issue which was exciting. And again, I'm lucky that through the international networks we're a part of, I've actually had a chance to meet most of the people who wrote the other articles in the issue. I also go to conferences such as ANZCHOG, COSA, Oncology Social Workers (OSWA), Cancer Nurses (CNSA) each year and have presented papers at many of them as well. CanTeen itself, back in 2006, ran a 2-3 day international conference on Adolescent and Young Adults and we brought people over from the UK and the US, together with all the Australian experts, to talk about it. I have also twice attended the Teenage Cancer Trust's international conference on adolescent and young adult cancer medicine, held every two years in the UK, and presented at it." (Claire T)

Build leadership and managerial skills

As you practice, you will find that your role requires a wide range of skills. As you become more senior and experienced in your role, you may take on additional duties, such as that of a supervisor, educator or manager, so that in addition to continually updating your cancer skills and knowledge, you may also need to diversify and develop skills in management, supervision or leadership through formal qualifications or further training. Or there may be other areas that you can gain skills and knowledge to complement your clinical practice, such as counseling or education. You may also need to develop general professional skills in areas including project management, IT, administration, research and finance. There are many short courses available both online and face to face that can quickly assist you to upskill in these areas. For further information see the Non-clinical Skills pages on Cancer Learning.

"Clinicians need to be well supported and mentored. Good team management is so important, especially education, training and succession planning. If you don't have any kind of succession planning and investment in the clinicians on the rise, then it can be a very difficult situation to manage in the long term." (Susan)

"I am certainly considering undertaking further training in counseling skills, which are invaluable in this area." (Marianne)

"Developing strong communication skills is critical- verbal and written - both in the context of multidisciplinary models of care generally but also to communicate with young people themselves as well." (Samantha)

Be a mentor

To help other professionals and ensure succession planning in the area of AYA cancer care, share your skills and experience by mentoring new health professionals entering the area of AYA cancer to provide them with guidance and advice to help them to build their knowledge and careers.

"I would like to have a more hands on role in mentoring the new generation of health professionals into AYA cancer care. I am doing it from afar at the moment through the development of the COSA guidance because of my circumstances. But I would l love to have a more hands on role providing supervision and support to clinicians coming through in the future. I believe AYA oncology care is a particularly challenging specialty and I think that the clinicians who choose to work in this area deserve the best possible support available - without it, they will burn out and good people will be lost. " (Susan)

"Like others involved in AYA cancer, I'm an "AYA consultant" to many groups - such as Cancer Council NSW, CanTeen, COSA, Cancer Voices Australia and provide online support for a section of the AYA course at Coventry University, UK." (Danielle)

"My role at CanTeen also has an advocacy component - we do a lot of advocacy work to improve services and better treatment options for adolescent and young adult cancer patients. We are very proud of our efforts to raise the profile of this group of cancer patients - it is something we have been passionate about for a long time but we have recently had quite a lot of media interest... and we have had the support of a lot of clinicians and allied health workers have been also been advocating for funding and the government has come on board." (Claire T)

Find out what other professionals currently working in AYA cancer care do, what they enjoy about their work, and how they have built their careers in AYA cancer care:

Dr Marianne Phillips, Consultant Paediatric & Adolescent Oncologist

Current role	Consultant Paediatric & Adolescent Oncologist and Palliative Care Specialist working at Princess Margaret Hospital for Children, Perth; the only tertiary paediatric institution in Western Australia. The paediatric haematology/oncology department has specific separate inpatient facilities for adolescents with cancer aged up to 17 years and still at school - the first adolescent specific facility for this age group in Australia. Also the Lead Clinician for WA Adolescent Tumour Collaborative within the State Cancer & Palliative Care Network, writing the Model of Care document and facilitating the creation of specific adolescent/young adult age-appropriate ambulatory and same day facilities at the major adult cancer centre.
Areas of interest and achievements	Established adolescent oncology facilities in the UK and Australia and the needs for age appropriate models of care and service settings Assisted in the development of online training modules in AYA cancer care Psychosocial and developmental needs of adolescents and young adults and how they may impact care in areas such as compliance Development of AYA specific palliative care options and settings Differences in adolescent tumours from other patient groups and the potentially worse outcomes for this patient group Developing clinical trial opportunities for AYA cancer patients Survivorship, late effects and follow up care
Career pathway	"I qualified in UK and commenced paediatric oncology training in 1982 in Manchester and subsequently in Cambridge and then London at Great Ormond Street and Royal Marsden Hospitals. I undertook a research Masters Degree in molecular biology at Royal Marsden, including spending time in young adult oncology/haematology. I was offered a Consultant post at Great Ormond Street Children's Hospital, London in 1991 and then moved to another Consultant Post in Cardiff, Wales, UK at the end of 1993, where I established an adolescent oncology facility for Wales. I moved to Perth, Western Australia in 1998 and helped establish an adolescent oncology service for Western Australia at the Princess Margaret Hospital for Children, Perth. I am currently the Lead Clinician for WA Adolescent Tumour Collaborative within the State Cancer & Palliative Care Network and have progressed a State Model of Care for AYA oncology and facilitated the creation of age appropriate ambulatory and same day AYA cancer care within the adult sector."
What would you recommend?	Remember that AYA patients are not children, but also, not adults Gain exposure to paediatric, adolescent and adult oncology to better understand the unique issues of each patient group Identify and approach mentors Understand the specific psychosocial needs of AYA and develop appropriate counselling skills Encourage AYA patients to enroll in clinical trials Work collaboratively with in multidisciplinary medical and psychosocial teams Attend conferences and workshops and meet others working in the area Undertake self directed learning - read journals, conference minutes and research articles

Dr Susan Palmer, Psychologist

Current role	Psychologist currently working as a private consultant, providing services as required by organisations or governments. Currently coordinating the development of the psychosocial guidelines for AYA cancer patients for COSA.
Areas of interest and achievements	Adolescent and young adult stages of development Recognition of the unmet gaps in AYA cancer care and addressing the unique needs of AYA patients Highlighting the psychosocial needs of adolescents and young adults which are increased by a cancer diagnosis Developing guidelines and frameworks for working with AYA patients and their needs to capture the available knowledge and make it available to new staff entering area and succession planning, such as the Peter Mac framework, the YCNP Psychosocial Assessment and Care Process and the upcoming COSA guidelines for psychosocial care of AYA patients Developing support structures and mentoring opportunities for professionals working in AYA care Recipient of a Churchill Scholarship allowing overseas travel to meet and shadow international experts in AYA care Author of international journal publications and collaborative research papers in various areas of adolescent and young adult care and development
Career pathway	"My interest has always been adolescents and young people so with all of my studies, I have tried specifically to choose adolescent health and development based streams. I always had an interest in oncology. I started doing volunteer work at CanTeen when I was about 20 and went to camps and ran the psychology parts of the camps for a number of years and ended up on the State committee for CanTeen. Then a position at CanTeen Victoria became available, which was my first position as a psychologist. Then I moved into working at ParaQuad, an organization that supports people with spinal injury where my role was to develop the Family Counselling Service. As 20 years old is the average age for spinal injury it was, once again, a role that focused on working with individuals and families around trauma and overcoming illness and injury. Throughout this time I was doing my PhD in Adolescent Trauma and had been working with PeterMac to recruit AYA cancer patients to be involved, so when Maree Sexton started the OnTrac@PeterMac program at PeterMac in 2004, I was approached to move over there as the senior psychologist to set up the psychology service. I worked there for 5 years. I left to have kids and since then, I have been doing consultancy work , research and writing articles."
Training and courses	"I have a Bachelor of Arts with a major in Psychology, a Graduate Diploma in Applied Health Psychology, a Masters in Adolescent Developmental Psychology and a PhD in Adolescent Trauma and Development. All except my grad dip have been completed through Melbourne University. I am currently doing a Masters of Public Health at Sydney University."
What would you recommend?	Looking at the individual first and the disease afterwards, not the other way around Learning from others working in the area, including internationally, collaborating and sharing knowledge to avoid duplication of resources and effort, to capture the expertise of certain settings/areas and optimise outcomes from funding. Developing resources, guides, and frameworks to capture the knowledge within the area to assist with succession planning in AYA health workforce Building mentoring and support networks for professionals working in cancer care Undertaking training to develop both cancer specific knowledge and skills and an understanding of adolescents and young adults, where they are in their lives and their particular needs

Dr Claire Treadgold, National Programs & Services Manager, CanTeen

Current role	National Programs and Services Manager working at CanTeen Australia, overseeing the staff and delivery of all programs and services to young people living with cancer aged 12 to 25 years across Australia including camps, delivering peer support models, providing information resources and online support and counselling.
Areas of interest and achievements	Ensuring the provision of age appropriate information and support to AYA cancer patients, particularly for issues such as fertility preservation and treatment options Launch of http://www.nowwhat.org.au - CanTeen's online support site containing information, forums and many free resources, both electronic and hard copy, for AYA patients, their siblings and family members. Global networking and sharing of information - close links with LIVESTRONG Young Adult Alliance Internationally published author of journal articles and invited speaker at international conferences
Career pathway	"I'm not from a traditional career path - I don't have a medical background. I have a PhD in Education, very much focused on youth participation, which I did around ten years ago. I completed it while working part time for another nonprofit, the YWCA's Encore Breast Cancer Program, running programs particularly for young women, and I ended up becoming the National Director of that program. We delivered support, education and exercise programs in eighty locations around Australia. During that time I became more and more aware of the work that CanTeen did, and jumped when a role there became available. For me, CanTeen was the perfect mix of my love of working with young people, and cancer support, which I had become passionate about through the breast cancer work. So I was able to combine both my interests in cancer and supporting young people. I have been with CanTeen for over five years now and seeing the change in that time is great."
Training and courses	PhD Education, University of Sydney Developed strong mentoring relationships with leaders in the field including Prof Archie Bleyer, Prof Karen Allbritton and Heidi Adams Attendance at regular AYA cancer conferences, seminars, workshops, professional days and meetings, including the LIVESTRONG Young Adult Alliance meetings, and Teenage Cancer Trust conferences in UK.
What would you recommend?	Like young people, enjoy interacting with them and always communicate with them honestly and at their level Gain some understanding around the challenges and difficulties that are specific to this age group of cancer patients Take opportunities to meet people and develop networks with others already working in the area and learn from their experience Look for training opportunities such as the new postgraduate certificate in Adolescent Oncology through the University of Melbourne Get online and look at the innovative work that different professional groups like CanTeen, and internationally, LIVESTRONG and Teenage Cancer Trust UK are doing.

Danielle Tindle, AYA Cancer Services Senior Project Officer & Cancer Survivor

Current role	Senior Project Officer for AYA Cancer Services for Queensland Health, based at the Royal Childrens Hospital. The work spans three tertiary hospitals (Princess Alexandra Hospital, Royal Brisbane and Womens Hospital, Royal Childrens Hospital) to develop linked AYA service teams. Also responsible for developing and implementing a model of care for linkages with the private sector and outreach integration with regional centres.
Areas of interest and achievements	Recipient of CanTeen scholarship to complete Postgraduate Certificate in Teenage and Adolescent Cancer Care at Coventry University, UK, graduating in the first cohort Recipient of travel grants from the Leukemia Foundation of Australia and LIVESTRONG to attend international AYA cancer conferences Advocate for AYA cancer patients AYA representative on several cancer committees Development of age appropriate models of care for AYA patients Survivorship and psychosocial issues, particularly sexuality and body image Consumer engagement and the role of the "expert patient"
Career pathway	" I was diagnosed with lymphoma in 2002 at the age of 22. After being pronounced in complete remission in 2004, and finishing my Masters degree in International Relations, I realised my focus has shifted and I was passionate about assisting other young patients with cancer. In 2005 I was featured on ABC televisions Australian Story which raised my profile considerably, and as a result I was invited to be involved with a number of advocacy projects and campaigns. So in 2006 I translated my personal experience into the professional sphere. At that stage, there were limited AYA support services available within hospitals or provided by NGOs. I approached the Leukaemia Foundation Australia with these concerns and given my background in research and academia, I was employed in 2006 to research and develop a national education and support program for young adults with blood cancer. Alongside this, I was heavily involved with a number of advocacy groups to advise on AYA psychosocial issues and the best way to support this demographic. In 2007, I was invited onto the Advisory Committee of Cancer Voices Queensland to represent the AYA demographic. I was also involved with various projects at CanTeen and PeterMac. In 2007, I was awarded one of five CanTeen scholarships to study for an online Postgraduate Certificate in Teenage and Young Adult Cancer Care run by the Coventry University, UK. This was the first course of this kind in the world, and run for the first time that year, so I was one of the first cohort of students to complete this degree. By this stage, I had significant experience presenting at various conferences, such as COSA, HSANZ and others. In 2008, I was invited to speak at the 5th International Conference on Teenage and young Adult Medicine in London, UK on the topic of Image and Sexuality. Later that year, I was invited to present my work at the LIVESTRONG Young Adult Alliance Conference in Austin, Texas. One of the committees I have been a member of since 2007 is the Queensland Health AYA Working Party whose remit was to identify the unique needs of AYA patients in Qld and look at the most appropriate model of care to address these needs. In 2009, I was invited by the chair of the AYA Working Party to be the AYA Senior Project Officer to research and develop a new model of specialised care for this group. I was employed by QLD Health in March 2009 and my role has since evolved from specific project work, to coordinating the statewide development of Qld AYA Cancer Services."
Training and courses	Postgraduate Certificate in Teenage and Young Adult Cancer Care, Coventry University, UK Masters of International Relations, University of Sydney Bachelor of Arts, University of Queensland Cancer Voices Queensland Consumer Training Workshop 2007, 2010 OnTrac@Peter Mac AYA Education Day 2008 Queensland Health AYA Workshop 2009 Queensland Health AYA Conference 2010 OnTrac@Peter Mac Professional Education Forum, COSA meeting, 2010
Groups and networks ?	Member of: Cancer Voices Queensland (CVQ) Advisory Committee Clinical Oncological Society of Australia (COSA) National Curriculum Advisory Committee, Development of a Post Graduate Certificate in Adolescent and Young Adult Oncology, Centre for Adolescent Health, University of Melbourne Consumer Informant Group, Development of a National Framework for Consumer Involvement in Cancer Control, Cancer Australia International Steering Committee for Teenage Cancer Trust, UK Getting involved in the profession and being part of a network
What would you recommend?	Have experience with this age group and know that you like working with them. Be multi-disciplinary. Given the complex nature of this age group, it is necessary to treat the young person in the context of their life; listen to other disciplines and work with them. Find a mentor and develop support networks for your own self-care. Attend as many multi-disciplinary AYA workshops as possible, and be involved in the planning of future services. Learn to communicate with this age group and really listen to the patient. Be reflective about your practice and treat each AYA patient as a unique individual.

Claire Masula, Adolescent and Young Adult Cancer Care Social Worker

Current role	The Adolescent and Young Adult Cancer Care Social Worker at the Royal Brisbane and Women's Hospital, working across all tumour streams in Medical Oncology and Radiation Oncology.
Areas of interest and achievements	The importance of communicating clearly and honestly with young people The psychosocial impact of cancer on AYA patients The disruptive effect of cancer during the key developmental stages of adolescence and young adulthood and the specific supportive care needs of young people with cancer at thist time of their lives.
Career pathway	"I started working with young women in a sexual assault support service, worked also with young homeless people and women who had experienced domestic violence. I moved to the UK and worked in child protection and with young people who were at risk of social isolation. When I returned to Australia, I had a complete change of direction when I started work as an oncology social worker at the RBWH in July 2009. I loved the work in cancer care; however I missed working with young people. When the position became available to work in both cancer care and with young people in August this year, I felt that it would be not only an opportunity to combine my skill base in my ideal job! I am temporarily in the position at this time as the recruitment process has not yet started."
Training and courses	Bachelor of Social Work (1999) Many conferences, seminars, workshops and meetings, particularly through the Oncology Social Worker Association of Australia (OSWA), networks of AYA professionals working in hospitals in Brisbane; and development opportunities with AYA centres like Peter Mac OnTrac Planning further training and professional development in the future, particularly the new AYA cancer care postgraduate certificate at University of Melbourne which is available from 2011
What would you recommend?	Be passionate about the care and unique needs of AYA patients Develop skills to work and interact effectively with the AYA population Gain an understanding of how cancer impacts psychosocially on young people, their siblings and families Find out about AYA care in Australia and become familiar with documents such as the National Service Delivery Framework Develop your networks, join groups and take up any available training opportunities

Samantha Van Staalduinen, Project Officer, Centre for Adolescent Health

Current role	Employed by the University of Melbourne, working out of the Centre for Adolescent Health at the Royal Children's Hospital, responsible for the curriculum development of the new postgraduate certificate in AYA cancer care in collaboration with the National Curriculum Advisory Committee comprised of AYA cancer care clinicians from around the country and in conjunction with the immediate project team, comprised of staff from the both the Centre of Adolescent Health and onTrac@PeterMac.
Areas of interest and achievements	Experienced university lecturer with a special interest in developing AYA specific educational opportunities for health professionals Published author of refereed journals and presenter at medical education conferences
Career pathway	"My background is in health professional education. After completing an undergraduate degree in genetics and immunology, I worked at the University of British Columbia in Vancouver, Canada for 7 years in a range of health sciences research, project management and program/curriculum development roles in the areas of doctor-patient communication, cross-cultural communication and multidisciplinary continuing education for health professionals.I was a founding task force member for the international conference "Where's the Patient's Voice in Health Professional Education?" and served as program manager for the University's CPD health and human services portfolio. In 2007 I moved to Sydney to complete a Masters in Medical Education and commenced as an associate lecturer with the Office of Postgraduate Medical Education at the University of Sydney, where I coordinated one postgraduate unit of study on problem-based learning, co-taught another on teaching and learning in medicine and contributed to the development of curricula for the Personal and Professional Development stream of the university's Medical Program. I also managed various research projects including a collaborative project developing a patient safety curriculum guide for the World Health Organization and a project investigating the education, training and support of NSW's prevocational doctors and international medical graduates. In 2010 I relocated to Melbourne and took up my current position with the University of Melbourne and the Centre for Adolescent Health (Royal Children's Hospital) to develop a postgraduate course in adolescent and young adult oncology (Graduate Certificate in Adolescent Health and Welfare- Oncology Specialisation), which was launched in early 2011."
What would you recommend?	Attend AYA cancer care lectures, forums and conferences where offered through national organisations and/or your local AYA cancer serviceand talk to those with experience in the field. Have a passion for working with young people and remember that they are young people first and foremost- cancer is an added layer of complexity to an already complex period in their lives. Undertake specialised education and training in AYA cancer care.

COSA AYA Interest Group
http://www.cosa.org.au/groups/aya/interest-group.html

Adolescents and Young Adults Cancer Group (AYACG)
http://www.canteen.org.au/default.asp?articleid=838&menuid=174

NSW Oncology Group: Child and Adolescent Tumours
http://www.cancerinstitute.org.au/supporting-best-practice/nsw-oncology-groups/child-and-adolescent

Advocacy Network email list sign up
http://www.kintera.org/c.8hKOI3MFIjI2E/b.6380483/k.837E/Action_Item/siteapps/advocacy/Register.aspx?c=8hKOI3MFIjI2E&b=6380483

Centre for Adolescent Health Mailing List
http://www.rch.org.au/cah/mailinglists.cfm?doc_id=10398

Cancer Voices Australia
http://www.cancervoicesaustralia.org.au/default.htm

CNSA Special Interest Groups
http://www.cnsa.org.au/special_interest.htm

Society for Adolescent Health and Medicine list serv sign up
http://www.adolescenthealth.org//source/ForumSignup/index.cfm?section=Forum_Signup

LIVESTRONG Young Adult Alliance
http://www.livestrong.org/What-We-Do/Our-Actions/Programs-Partnerships/LIVESTRONG-Young-Adult-Alliance

LIVESTRONG Newsletter sign up
http://www.livestrong.org/Who-We-Are/Press-Contact

Teenage Cancer Trust UK Multidisciplinary Forum
http://www.teenagecancertrust.org/what-we-do/multi-disciplinary-forum/

Association of Oncology Social Work Child and Adolescent Special Interest Group
http://www.aosw.org/html/sigs.php

International Society for Pediatric Oncology Membership
http://www.siop.nl/about-siop/membership/membership

International Association of Adolescent Health (IAAH) Membership
http://iaah.org/index.php?option=com_content&view=article&id=77&Itemid=2

Many of the below events have AYA streams. Check the websites for details and dates:

Clinical Oncological Society of Australia (COSA) ASM
http://www.cosa.org.au/asm.html

OnTrac@Peter Mac Education Seminars
http://www1.petermac.org/ontrac/prof-ini-edu.asp

Centre for Adolescent Health events
http://rch.org.au/blogs/cah/category/events/

CanTeen Events
http://www.canteen.org.au/default.asp?menuid=21

Cancer Nurse Society of Australia Winter Congress
http://www.cnsa.org.au/CNSA_Winter_conference.htm

Oncology Social Workers of Australia
http://www.oswa.net.au

Australian Psychological Society
http://www.psychology.org.au/LandingPage.aspx?ID=3917

• Many other conferences may also have AYA streams. Check the events calendars of Australian and international cancer organizations here.
• Check with your professional body for suitable events here

LIVESTRONG Young Adult Alliance meetings
http://www.livestrong.org/What-We-Do/Our-Actions/Programs-Partnerships/LIVESTRONG-Young-Adult-Alliance

International Society for Pediatric Oncology (SIOP) Annual Congress - AYA stream
http://www.siop.nl/congresses

Teenage Cancer Trust UK, International Conference
http://www.teenagecancertrust.org/what-we-do/international-development/

Im Too Young for This! Annual Cancer Summit for Young Adults
http://omgsummit.org/2011/

Rise to Action Conferences
http://www.childrenscause.org/programs/rta

Child and Adolescent Rights Congress
http://www.childrightscongress.org/overview.php

International AYA Cancer Awareness week
http://thegrouproom.tv/young-adults.html

COSA AYA SIG Workshops and Events
http://www.cosa.org.au/Groups/Interestgroups/AYA.htm

OnTrac@PeterMac Professional Development, Education and Training workshops
http://www1.petermac.org/ontrac/prof-development.asp

OnTrac@PeterMac Seminar Program
http://www1.petermac.org/ontrac/prof-ini-edu.asp

Centre for Adolescent Health Victoria Education and Training
http://www.rch.org.au/cah/practice_learning.cfm?doc_id=10395

NSW Centre for the Advancement of Adolescent Health Events
http://www.caah.chw.edu.au/events/

Princess Margaret Hospital Western Australia Child and Adolescents Education
http://www.pmh.health.wa.gov.au/development/education/

Medical Register of Australia Youth and Adolescent Development Certificate Course
http://www.medicalregister.com.au/youth_and_adolescent_development.php

EdCaN AYA Case Study
http://www.cancerlearning.gov.au/edcan_resources/#/xml/module_3/casestudies/osteosarcoma

eviQ Treatment protocols: AYA content stream
http://www.eviq.org.au

ACS Distance Education Adolescent Psychology Course
http://www.acs.edu.au/courses/Adolescent-Psychology-451.aspx

ACS Distance Education Development Psychology Course
http://www.acs.edu.au/courses/developmental-psychology-372.aspx

Study Now Adolescent Psychology Course
http://www.studynow.com.au/courses/Courses-Direct-Distance-Education/Adolescent-Psychology.html

Nursing Oncology Education Program Online Module: At the Crossroads: Cancer in Ages 15-39
http://www.noeptexas.org/index.php?option=com_joomla_lms&Itemid=44&task=course_guest&id=40

Nursing Oncology Education Program Online Module: Survivorship Suite: Late Effects of Cancer Treatment
http://www.noeptexas.org/index.php?option=com_docman&task=doc_download&gid=119&Itemid=4

CancerNursing.org Cancer Care for Children and Young People module
http://www.cancernursing.org/courses/currentcourses/full.asp?CourseID=38

Society for Adolescent Health and Medicine Adolescent Health Curriculum module
http://www.adolescenthealth.org/Curriculum/1294.htm

John Hopkins Bloomberg School of Public Health Adolescent Health and Development
http://ocw.jhsph.edu/courses/AdolHealthDev/index.cfm

Texas Department of State Health Services (DSHS) Adolescent Health Screening free online course
http://txhealthsteps.com/catalog/coursedetails.asp?crid=1708

EuTeach Slides and Videos: Adolescent Health
http://www.euteach.com/euteach_home/euteach-resources-tools.htm

Included below are some courses, websites and online activities that provide information regarding the basic terms, concepts and issues in cancer care. For more foundational cancer educational opportunities and resources, see Fundamentals of Oncology link

Cancer Learning
An online professional development website designed specifically for medical and allied health care practitioners working in cancer care to enhance their skills to ensure optimal patient care. There is a dedicated page in the FIND section of resources and learning activities relating to Adolescent and Young Adult cancer care.
http://www.cancerlearning.gov.au/

EdCaN learning resources
The EdCaN resources are based on video case studies, supporting modules and learning activities that provide highly flexible and accessible education designed to support the professional development of all nurses and allied health professionals working in cancer care, including those who work in the area of Adolescent and Young Adult Cancers, with a case study focusing on the specific needs of this population group.
http://www.cancerlearning.gov.au/build/edcan_learning_resources.php

eviQ Cancer Treatments Online
Accurate, current, relevant, and evidence based protocols and information about clinical cancer treatments, including protocols specific to AYA cancers. Free registration is required for access.
http://www.eviq.org.au/

Education Program in Cancer Care (EPICC) an initiative of Cancer Australia
An online cancer education program, designed for non-cancer specialist medical practitioners is available that can be completed as learning modules or accessed as informational resources by RACGP and ACRRM members.
http://www.racgp.org.au/ or https://www.acrrm.org.au/

International Atomic Energy Agency Applied Sciences of Oncology Course Version 3
Developed by the CCORE (Collaboration for Cancer Outcomes Research & Evaluation) of the South Western Sydney Area Health Service, this distance learning material contains 8 topics and 80 modules covering radiobiology, physics, oncology anatomy, palliation, chemotherapy, communication skills and molecular biology. The full course can be downloaded for free from IAEA website and burned to 2 CDs.
http://www.iaea.org/Publications/Training/Aso/register.html

National Cancer Institute 'Understanding Cancer Series'
Graphic-rich tutorials regarding various cancer issues for educational use. Each tutorial is available in PDF and PowerPoint formats.
http://www.cancer.gov/cancertopics

Virtual Nursing Education
Online educational modules; includes an Introduction to Cancer module
http://www.virtualnursingeducation.com/

LIVESTRONG Young Adults with Cancer videos
http://www.youtube.com/user/livestrongarmy#p/c/88EAB22E9D8ACD85

Teens Living With Cancer: Cancer 101
http://www.teenslivingwithcancer.org/cancer-facts/cancer-101/

Children's Cause Cancer Advocacy Virtual Rise to Action Conference videos
http://www.childrenscause.org/virtual-register

University Hospitals Inaugural Adolescent & Young Adult (AYA) Cancer Symposium, 2008 video
http://www.uhhospitals.org/rainbowchildren/OurServices/DivisionofHematologyOncology/PediatricHematologyOncologyNews.aspx

Inaugural Adolescent & Young Adult (AYA) Cancer Symposium in Cleveland video
http://www.youtube.com/watch?v=XDSKNnKQ6-Y

University of Sydney

University of Melbourne/Centre for Adolescent Health

Griffith University

Curtin University

Flinders University

Charles Sturt University

Monash University

Coventry University

University of Minnesota

University of Carolina

European Training in Effective Adolescent Care and Health (EuTeach)

Pediatric, Adolescent and Young Adult Gynaecology and Women's Health Care

Many organizations, professional bodies and universities offer scholarship and funding opportunities for a variety of research and educational projects - check with them if they are not included below or find more details in the Share section of Cancer Learning.

Canteen Scholarships for the Graduate Certificate of Adolescent Health and Welfare Oncology Stream
http://www.rch.org.au/cah/practice_learning.cfm?doc_id=13938#Fees_and_Scholarships

Cancer Institute NSW: Adolescent and Young Adult Palliative Care Clinical Training Fellowship
http://www.cancerinstitute.org.au/research-grants-and-funding/grants

NH&MRC Scholarships
http://www.nhmrc.gov.au/grants/types-funding/-z-list-funding-types/scholarships

Winston Churchill Memorial Trust Scholarships
http://www.churchilltrust.com.au/

COSA Trainee Travel Grants (COSA members only)
http://www.cosa.org.au/about-us/general-grants/trainee.html

PeterMac Cancer Research Scholarships
http://www.petermac.org/Research/ScholarshipInformation

PeterMac Summer Scholarships Program
http://www.petermac.org/Research/SummerScholarshipProgram

University of Melbourne Scholarships (Local scholarships for new Graduate Certificate in AYA Oncology commencing 2011)
http://cms.services.unimelb.edu.au/scholarships/pgrad/local/available

Leukaemia Foundation Grants and Scholarships
http://www.leukaemia.org.au/web/research/researchgrants.php

Cancer Council Western Australia Student Vacation Research Scholarship
http://www.cancerwa.asn.au/research/funding/usher/

Cancer Council Victoria Scholarships
http://www.cancervic.org.au/about-our-research/our-research-centres/biomedical_research_ccv_supported/apply_for_funding/postgraduate_research_scholarships

Cancer Council Queensland Health Professional Grants
http://www.cancerqld.org.au/page/need_support/education_programs/health_professional_grants/

Cancer Council New South Wales Scholarships and Grants
http://www.cancercouncil.com.au/editorial.asp?pageid=2042

Cancer Council ACT Grants
http://www.actcancer.org/research/grant-applications.aspx

GrantsLINK
http://www.grantslink.gov.au/About.aspx

Postgraduate Scholarship Database for Australia
http://www.jason.edu.au/

International Student Scholarships for Coventry Postgraduate course
http://wwwm.coventry.ac.uk/international/Tuitionfeesandscholarships/International/Pages/InternationalTuitionFeesandScholarships.aspx

Teenage Cancer Trust UK, Professor of Teenage and Young Adult Cancer Medicine at The Christie NHS Foundation Trust, Manchester and The University of Manchester
http://www.teenagecancertrust.org/what-we-do/health-professionals/professor/

Society for Adolescent Health and Medicine Training Opportunities in Adolescent Health
http://www.adolescenthealth.org/Fellowships_Training.htm

CanTeen Volunteer Opportunities
http://www.canteen.org.au/default.asp?menuid=47

Centre for Adolescent Health Placement Opportunities
http://www.rch.org.au/cah/practice_learning.cfm?doc_id=10728

Program of Experience in the Palliative Approach (PEPA)
http://www.pepaeducation.com/

Palmer, Susan and Thomas, David (2008), "A practice framework for working with 15-25 year-old cancer patients treated within the adult health sector". OnTrac@PeterMac. http://www1.petermac.org/ontrac/professional.asp#pracframe

Cancer Australia (2010), "Data Set Development Plan: AYA with cancer". http://www.canceraustralia.gov.au/cancer-data/data-set-development

Cancer Council Western Australia (2010), "Cancer Update", PowerPoint presentation http://www.cancerwa.asn.au/resources/2010-07-02-Mays-presentation.pdf

Bullivant, Catherine; O'Brien, Tracey; Anns, Mark; Lean, Cynthia; Sinclair, Sue and Bishop, Jim (2009), "Adolescents and Young Adults with Cancer in NSW Monogragh". Cancer Institute NSW, April. http://www.cancerinstitute.org.au/cancer_inst/publications/pdfs/cm-2008-2_aya_and_cancer_april_2009.pdf

CanTeen (2009), "Outcomes Model for Young People Living with Cancer (YPLWC)" http://www.canteen.org.au/docs/CanTeen%20Statement%20of%20Outcomes%20Model.pdf

Cancer Australia and CanTeen (2009), "National Service Delivery Framework for Adolescents and Young Adults with Cancer". http://www.canteen.org.au/docs/AYA_NSDF_19%20Feb_2009.pdf

Thompson, K and Thomas, D (2009), "A facilitated peer support and education based survivorship group for adolescents and young adults living with cancer: Building Cancer Support Groups, Final Report". http://www.canceraustralia.gov.au/sites/default/files/user-upload/about_us/building_effective_cancer_support_groups_report.pdf

Canteen AYA Cancer Services (2008), "The Views of Young People Workshop", report 12 January http://www.docstoc.com/docs/20501856/CanTeen-Document

Palliative Care Australia, "Journeys- Palliative care for children and teenagers". http://www.palliativecare.org.au/Default.aspx?tabid=1122

South Australian Adolescent and Young Adult Cancer Care Pathway Optimising outcomes for all adolescent and young adult South Australians with a cancer diagnosis
http://www.sahealth.sa.gov.au/wps/wcm/connect/public+content/sa+health+internet/health+information/health+information+for+the+clinician/resources/south+australian+adolescent+and+young+adult+cancer+care+pathway?contentIDR=2de81f0045a682b08fbeaf9f9859b7b1&useDefaultText=0&useDefaultDesc=1

Chown, Peter; Kang, Melissa; Sanci, Lena; Newnham, Verity and Bennett, David (2008), "Adolescent Health GP Resource Kit", NSW Centre for the Advancement of Adolescent Health, Children's Hospital Westmead and NSW Transcultural Mental Health Centre. http://www.caah.chw.edu.au/resources/#03

Sixty Minutes (2007) transcript, "The Forgotten Generation", 4 November. http://sixtyminutes.ninemsn.com.au/stories/peteroverton/313365/forgotten-generation

The Australian newspaper (2005), "The Lost Generation", 3 September. https://www.canteen.org.au/docs/The_Lost_Generation_03-Sep-05.pdf

Australian Story (2005) transcript, "From My Father's Fridge", 28 April. ABC Television. http://www.abc.net.au/austory/content/2005/s1355603.htm

Eden, Tim (2010) "Teenage and Young Adult Cancer", Oncology News, 4,5: 114-116. http://www.oncologynews.biz/pdf/sep_oct_10/ONSO10_114_teenage_cancer.pdf

Australian Government Response to Australian Senate Community Affairs Committee (2006), "The Cancer Journey: Informing Choice", Commonwealth of Australia. http://www.aph.gov.au/senate/committee/clac_ctte/completed_inquiries/2004-07/cancer/gov_res.pdf

Australian Senate Community Affairs Committee (2005), "The Cancer Journey: Informing Choice". http://www.aph.gov.au/senate/committee/clac_ctte/completed_inquiries/2004-07/cancer/report/index.htm

Australia's Young People 2003: "Their Health and Wellbeing"; Australian Institute of Health and Welfare; Australian Government. Section 3, part 11 - Chronic conditions http://www.aihw.gov.au/publications/index.cfm/title/9569

Cancer Council Western Australia Adolescents and Young Adults information http://www.cancerwa.asn.au/patients/adolescent-and-youth/

Hayes-Lattin, Brandon; Mathews-Bradshaw, Beth and Siegel, Stuart (2010), "Adolescent and Young Adult Oncology Training for Health Professionals: A Position Statement", Journal of Clinical Oncology, Vol. 28 No. 32. http://jco.ascopubs.org/content/28/32/4858.abstract

Zebrack, Brad; Mathews-Bradshaw, Beth and Siegel, Stuart (2010), "Quality Cancer Care for Adolescents and Young Adults: A Position Statement", Journal of Clinical Oncology, Vol. 28 No. 32. http://jco.ascopubs.org/content/28/32/4862.abstract

Beck, Melinda (2010) "'Too Young for Cancer' and Demanding Action", The Wall Street Journal, 9 November. http://online.wsj.com/article/SB10001424052748703514904575602523936086974.html

International Charter of Rights for Young People with Cancer http://www.cancercharter.org/

NHS Paediatric/Adolescent Oncology Guidelines - UK and International http://www.library.nhs.uk//cancer/ViewResource.aspx?resID=155079

National Comprehensive Cancer Network (NCCN) (2010), "Minimal Improvement in Adolescent and Young Adult (AYA) Cancer Patients Survival Rate", NCCN 15th Annual Conference report, 15 March. http://www.nccn.org/about/news/newsinfo.asp?NewsID=246

World Health Organisation (WHO) (2010),"Adolescent Health" brochure, http://www.who.int/entity/child_adolescent_health/documents/cah_adh_flyer_2010_12_en.pdf

LIVESTRONG Young Adult Alliance (LSYAA) (2007) "Closing the Gap: A Strategic Plan - Addressing the recommendations of the Adolescent and Young Adult Oncology Progress Review Group". http://www.planning.cancer.gov/library/2007_ayao_SP.pdf

Bleyer, A; O'Leary, M; Barr, R. and Ries, LAG (Eds) (2006), "Cancer Epidemiology in Older Adolescents and Young Adults 15 to 29 Years of Age, Including SEER Incidence and Survival: 1975-2000". National Cancer Institute, NIH Pub. No. 06-5767. Bethesda, MD. http://seer.cancer.gov/publications/aya/

The Adolescent and Young Adult Oncology Progress Review Group (2006), "Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer: Report of the Young", Office of Science Planning and Assessment Library, Bethesda, MD. http://www.planning.cancer.gov/library/AYAO_PRG_Report_2006_FINAL.pdf

National Institute for Health and Clinical Excellence (NICE) (2005), "Improving outcomes in children and young people with cancer". United Kingdom. http://www.nice.org.uk/csgcyp

Children's Oncology Group (2004), "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" http://www.survivorshipguidelines.org/

National Cancer Institute (NCI) Adolescent and Young Adults with Cancer Information http://www.cancer.gov/cancertopics/aya

American Society for Clinical Oncology (ASCO) "Cancer in Young Adults" information http://www.cancer.net/patient/Coping/Age-Specific+Information/Cancer+in+Young+Adults

OnTrac@Peter Mac
http://www1.petermac.org/ontrac/index.asp

CanTeen
http://www.canteen.org.au/

Cancer Voices Australia
http://www.cancervoicesaustralia.org.au/

Cancer Council Cancer Connections Young Adults forum
http://www.cancerconnections.com.au/yacs

Leukaemia Foundation
http://www.leukaemia.org.au/

Livewire
http://www.livewire.org.au/

Chronic Illness Peer Support Program (ChIPS)
http://www.rch.org.au/chips/index.cfm?doc_id=295

The Warwick Foundation: In My Shoes program
http://www.thewarwickfoundation.org.au/

LIVESTRONG Young Adult Alliance
http://www.livestrong.org/What-We-Do/Our-Actions/Programs-Partnerships/LIVESTRONG-Young-Adult-Alliance

I'm Too Young for This!
http://www.imtooyoungforthis.org

Teenage Cancer Trust UK website
http://www.teenagecancertrust.org/

Planet Cancer
http://www.planetcancer.net/

Group Loop
http://www.grouploop.org/

The Ulman Cancer Fund for Young Adults
http://www.ulmanfund.org

Teens Living With Cancer website
http://www.teenslivingwithcancer.org/

SeventyK
http://www.seventyk.org/

CancerCare Young Adults Program
http://www.cancercare.org/tagged/young_adult

Vital Options Young Adults with Cancer links
http://www.vitaloptions.org/yawc.htm

CanTeen New Zealand
http://www.canteen.org.nz/

Young Adult Cancer Canada
http://youngadultcancer.ca/

Defeat Cancer Young Adult Survivor Network
http://defeatcancer.info/young-adult-survivor-network/

The Group Room Young Adult resources
http://thegrouproom.tv/young-adults.html

www.15-40.org
http://www.15-40.org/

Be Bright Pink
http://www.bebrightpink.org/

Young Women's Breast Cancer Program
http://www.siteman.wustl.edu/ywbcp.aspx

Sarcoma Alliance
http://www.sarcomaalliance.org/Youth/youth5.html

MD Anderson Adolescent & Young Adult (AYA) Program
http://www.mdanderson.org/patient-and-cancer-information/care-centers-and-clinics/childrens-cancer-hospital/support-programs/aya-program.html

Journal of Adolescent and Young Adult Oncology - launching 2011 http://www.liebertpub.com/JAYAO

Journal of Clinical Oncology (2010), Adolescent and Young Adult supplement, Volume 28, Issue 32 November 10.
http://jco.ascopubs.org/content/28/32.toc

Cancer Forum (2009), "Adolescent and Young Adult Cancers" edition, Volume 33, Issue 1, March.
http://www.cancerforum.org.au/Issues/2009/March/Forum/Adolescent_and_young_adult_cancers.htm

Seminars in Oncology (2009), "Impact of Malignant Disease on Young Adults" issue, Volume 36, Issue 3, June.
http://www.seminoncol.org/issues/contents?issue_key=S0093-7754(09)X0002-3

Pediatric Blood and Cancer Journal (2008), "SIOP Symposium on Adolescent and Young Adult Oncology" supplement, Volume 50, Issue 5 (Supplement), May.
http://onlinelibrary.wiley.com/doi/10.1002/pbc.v50:5%2B/issuetoc

Journal of Adolescent Health (2008), "Expanding Our Knowledge of HPV, A Common Cause of Cancers in the U.S. and Worldwide", Volume 43, Issue 4, Supplement, October.
http://journals.elsevierhealth.com/periodicals/jah/issues/contents?issue_key=S1054-139X(08)X0010-2

Cancer "Walking Two Worlds-Adolescent and Young Adult Oncology" supplement, Proceedings of a Symposium held by the Pediatric Oncology Group of Ontario (2006), Volume 107, Issue S7, 1 October.
http://onlinelibrary.wiley.com/doi/10.1002/cncr.v107:7%2B/issuetoc

European Journal of Cancer Adolescent and Young Adult issue (2003), Volume 39, Issue 18, December.
http://www.sciencedirect.com/science?_ob=PublicationURL&_cdi=5024&_pubType=J&_acct=C000008818&_version=1&_urlVersion=0&_userid=115085&md5=c7e500c1be08c1e2d6becf987406c262&jchunk=39#39

Archives of Pediatrics & Adolescent Medicine, Haematolgic Malignancies articles
http://archpedi.ama-assn.org/cgi/collection/hematology_hematologic_malig

Archives of Pediatrics & Adolescent Medicine, Oncology articles
http://archpedi.ama-assn.org/cgi/collection/oncol

Omar, Hatim; Greydanus, Donald E; Patel, Dilip R. and Merrick, Joav (Eds) (2010), Adolescence and Chronic Illness: A Public Health Concern. Nova Publishers. https://www.novapublishers.com/catalog/product_info.php?products_id=17341

Bennett, David; Towns, Susan; Elliott, Elizabeth and Merrick, Joav (2009), Challenges in Adolescent Health, Nova Publishers. Publishers. https://www.novapublishers.com/catalog/product_info.php?products_id=10074

Hodgkinson, Katharine and Gilchrist, Jemma (2008), Psychosocial Care of Cancer Patients: A Health Professional's Guide for What to Say and Do, Ausmed Pty Ltd. http://www.ausmed.com.au/Psychiatric-/-Mental-Health/Psychosocial-Care-of-Cancer-Patients-A-Health-Professional-s-Guide-to-What-to-Say-and-Do.html

Kelly, Daniel and Gibson, Faith (Eds) (2008), Cancer Care for Adolescents and Young Adults, Wiley Publishing. http://onlinelibrary.wiley.com/doi/10.1002/9780470697740.ch4/pdf

Bleyer, Archie W. and Barr, Ronald D. (2008), Cancer in Adolescents and Young Adults, Springer Publishing. http://www.amazon.com/Cancer-Adolescents-Adults-Pediatric-Oncology/dp/3540408428

Eden, Tim; Barr, Ronald; Bleyer, Archie and Whiteson, Myrna (Eds) (2005), Cancer and the Adolescent 2nd edition, BMJ Books, Wiley Publishing. http://au.wiley.com/WileyCDA/WileyTitle/productCd-0727918109.html

Australian Cancer Trials Online
http://www.australiancancertrials.gov.au/

Memorial Sloan-Kettering Cancer Center, Adolescent and Young Adult Cancer Survivors: Identity Development
http://clinicaltrials.gov/show/NCT00832325

Klosky, J. (2010), "Sperm Banking among Adolescents Newly Diagnosed with Cancer: Development of a Profiling and Referral Tool", St Jude Hospital Sperm Banking Trial Protocol.
http://www.stjude.org/stjude/v/index.jsp?vgnextoid=28e3a0d3c413b210VgnVCM1000001e0215acRCRD&vgnextchannel=6890bfe82e118010VgnVCM1000000e2015acRCRD&SearchUrl=search_results.jsp&QueryText=adolescent

Ferrari, A; Montello, M; Budd, T. and Bleyer, A. (2008), "The challenges of clinical trials for adolescents and young adults with cancer". Pediatric Blood & Cancer. 50(5 Suppl):1101-4, May.
http://www.ncbi.nlm.nih.gov/pubmed/18360838

Williams, Lynda, (2008) "Slipping through the gap: teenage oncology patients miss trial benefits", Medwire Interviews, 9
http://www.medwire-news.md/interview9.aspx

Ferrari, A and Bleyer, A. (2007), "Participation of adolescents with cancer in clinical trials", Cancer Treatment Reviews. 33(7):603-8, Nov.
http://www.ncbi.nlm.nih.gov/pubmed/17250970

Bleyer, A; Budd, T. and Montello, M. (2006), "Adolescents and young adults with cancer: the scope of the problem and criticality of clinical trials". Cancer, 107(7 Suppl):1645-55, Oct 1.
http://onlinelibrary.wiley.com/doi/10.1002/cncr.22102/abstract

Centre for Adolescent Health: Health and wellbeing after treatment for cancer pilot study
http://www.wch.org.au/cah/research.cfm?doc_id=13976

OnTrac@PeterMac current research projects
http://www1.petermac.org/ontrac/prof-research.asp

Murdoch Children's Research Institute Adolescents Research
http://www.mcri.edu.au/pages/research/research-group.asp?G=145

National Cancer Institute Adolescent & Young Adult Health Outcomes & Patient Experience Study
http://outcomes.cancer.gov/surveys/aya/

Report: National Cancer Institute Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) Study
http://outcomes.cancer.gov/surveys/aya/aya_hope_fact_sheet.pdf

National Cancer Institute Snapshot of Adolescent and Young Adult Cancers
http://www.cancer.gov/aboutnci/servingpeople/aya-snapshot.pdf

OHSU Knight Cancer Institute Adolescent and Young Adult (AYA) Oncology Program research
http://www.ohsu.edu/xd/health/services/cancer/outreach-programs/programmatic-outreach/adolescent-young-oncology.cfm

"The Need for Change: Why we need a new model of care for Adolescents & Young Adults with Cancer" based on a presentation by Tracey O'Brien, Anne Senner, David Thomas, Claire Treadgold and Andrew Young at the Improving the Management of Cancer Services 2006 Conference, Melbourne
https://www.canteen.org.au/docs/The_Need_for_Change.pdf

Cancer Council Western Australia (2010) Cancer Update PowerPoint
http://www.cancerwa.asn.au/resources/2010-07-02-Mays-presentation.pdf

Nursing Oncology Education Program: Adolescent and Young Adult Cancer: Closing Nurses' Knowledge Gaps (award winner at Fifth Annual LIVESTRONG Young Adult Alliance meeting 2010)
http://www.noeptexas.org/index.php?option=com_docman&task=doc_download&gid=159&Itemid=4

Center for Bioethics, Science and Society's Oncofertility Summer Summit, July 22nd-24th, 2009: Conference PowerPoint Presentations:
https://depot.northwestern.edu/btb327/public_html/PowerPoint%20Presentations/index.html

Jones, Gayle "Improving palliative care services for adolescents and young adults with cancer" Department of Pain and Palliative Care, OnTrac@PeterMac, Peter Macallum Cancer Centre
http://www.palliativecare.org.au/LinkClick.aspx?link=APCC%2fPresentations%2fJONES_Gayle_PRESENTATION.pdf&tabid=1662&mid=2528

National Cancer Institute "Cancer Therapy Evaluation Program AYA Biology Workshop", June 9-10, 2009 presentations
http://ctep.cancer.gov/industryCollaborations/aya_biology_workshop.htm

Downden, Stephanie and Phillips, Marianne (2008), "Establishing a state-wide Paediatric Palliative Care program in WA", Association for the Wellbeing of Children in Healthcare conference.
http://www.awch.org.au/pdfs/conferences/2008/10_DOWDEN_Stephanie.pdf

Millar, Brett; Patterson, Pandora & Treadgold, Claire (2008), "Understanding and meeting the psychosocial needs of adolescents and young adults with cancer in Australia"
https://www.canteen.org.au/docs/TCT%20PosterPresentation_2008.pdf

Cancer Institute NSW Poster (2008), "Adolescent and Young Adult Cancer in NSW"
http://www.cancerinstitute.org.au/publications/i/adolescent-and-young-adult-cancer-in-nsw

CanTeen Research team conference presentations
http://www.canteen.org.au/default.asp?articleid=3082&menuID=29

Wicks, Lynley "Addressing the Psychological Needs of Adolescent Cancer Survivors"
http://www.involve.org.nz/involve/presentations/59.%20psyc%20needs%20Evolve%20Lynley%20Wicks.ppt

Brookfield, S "Engaging Young People in Designing the Queensland Children's Hospital"
http://www.changechampions.com.au/resource/Samuel_Brookfield.pdf

Nelson, Rowena; Rushton, Shelley; Sinclair, Sue and Ward, Robyn (2010), "Awareness, accessibility and adaptability of eviQ information and treatment protocols in clinical practice", Incite, Issue 5, September.
http://www.incite.cancerinstitute.org.au/articles/eviQ-Awareness_accessibility_and_adaptability_of_treatment_protocols.aspx

Millar B; Patterson, P. and Desille, N. (2010), "Emerging adulthood and cancer: how unmet needs vary with time-since-treatment" Palliative & Supportive Care. 8(2):151-8, June.
http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=7808871&fulltextType=RA&fileId=S1478951509990903

CNW Group (2010), "Adolescent and Young Adult Cancer Patients 'Falling Through the Cracks'" 11 March, Canada
http://www.newswire.ca/en/story/689119/adolescent-and-young-adult-cancer-patients-falling-through-the-cracks

Teenage Cancer Trust UK, "Specialist Services for Young People with Cancer", (2010).
http://www.teenagecancertrust.org/what-we-do/specialist-services/

Cancer Council Australia (2009), "Young cancer fighters miss out", Science Alert, Wednesday, 18 November.
http://www.sciencealert.com.au/news/20091811-20256-2.html

Adams, Heidi (2008), "Patients of a Different Stripe", SU2C OP-ED , http://www.standup2cancer.org/node/970

Bleyer, A; Barr, R; Hayes-Lattin, B; Thomas, D; Ellis, C. and Anderson, Biology and Clinical Trials Subgroups of the US National Cancer Institute Progress Review Group in Adolescent and Young Adult Oncology]. (2008), "The distinctive biology of cancer in adolescents and young adults".Nature Reviews Cancer. 8(4):288-98, Apr.
http://www.nature.com/nrc/journal/v8/n4/abs/nrc2349.html

Palmer, S; Mitchell, A; Thompson, K. and Sexton, M. (2007), "Unmet needs among adolescent cancer patients: a pilot study". Palliative & Supportive Care. 5(2):127-34, June.
http://journals.cambridge.org/action/displayFulltext?type=1&fid=1028916&jid=PAX&volumeId=5&issueId=02&aid=1028912

Bleyer, A. (2005), "The adolescent and young adult gap in cancer care and outcomes". Current Problems in Pediatric and Adolescent Health Care, Vol. 35, Issue 5, May 2005. http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B7584-4FYHCMC-6&_user=918210&_handle=V-WA-A-W-Y-MsSAYZA-UUA-U-AAWEUCAUUE-AAWZZBAYUE-BBWUBCWZB-Y-U&_fmt=summary&_coverDate=06%2F30%2F2005&_rdoc=6&_orig=browse&_srch=%23toc%2312916%232005%23999649994%23593079!&_cdi=12916&view=c&_acct=C000047944&_version=1&_urlVersion=0&_userid=918210&md5=33b7f21099a7ea4e7ba8cce4f739e289

Sawyer, S; Shea, L and Patton, GC. (2001), "Do we need specialist units for adolescents in hospitals?" British Medical Journal.
http://www.bmj.com/content/323/7309/401.extract

Pollock, Brad H (2007), "Where Adolescents and Young Adults with Cancer Receive Their Care: Does It Matter?", Journal of Clinical Oncology, 25,29: 4522 -4523. http://jco.ascopubs.org/content/25/29/4522.full

Quinn, Gwendolyn P. and Vadaparampil, Susan T. (2009), "Fertility Preservation and Adolescent/Young Adult Cancer Patients: Physician Communication Challenges", Journal of Adolescent Health, April, Vol. 44, Issue 4, Pages 394-400.
http://www.jahonline.org/article/S1054-139X(08)00405-9/abstract

Chapple, Alison; Salinas, Maria; Ziebland, Sue; McPherson, Ann and Macfarlane, Aidan (2007), "Fertility Issues: The Perceptions and Experiences of Young Men Recently Diagnosed and Treated for Cancer", Journal of Adolescent Health, January, Vol. 40, Issue 1, Pages 69-75.
http://www.jahonline.org/article/S1054-139X(06)00267-9/abstract

Mason, Emma (2005) "Fertility: it's up to doctors to think ahead", Cancer World, July/August
http://www.cancerworld.org/pdf/2252_cw7_46_52_Patient%20Voice.pdf

Maybe Later Baby: A guide to fertility for young people with cancer", CanTeen Australia
http://www.nowwhat.org.au/about/resources/maybe-later-baby-a-guide-to-fertility-for-young-people-with-cancer

Oncofertility publications
http://oncofertility.northwestern.edu/researchers/selected-oncofertility-publications

Oncofertility research
http://oncofertility.northwestern.edu/research-projects

Oncofertility Presentation
http://oncofertility.northwestern.edu/researchers/oncofertility-presentations

Oncofertility Research:
http://www.livestrong.org/What-We-Do/Our-Actions/Professional-Tools-Training/For-Health-Care-Professionals/Sharing-Hope

Fertile Hope website
http://www.fertilehope.org/

Myoncofertility.org website
http://myoncofertility.org/

Royal Women's Hospital Fertility and Infertility information
http://www.thewomens.org.au/fertilityandinfertility

CanTeen Now What Fertility and Treatment Forum
http://www.nowwhat.org.au/community/forums/fertility-and-cancer-treatment/fertility-and-cancer-treatment?page=2

Hope for Two: Pregnant With Cancer
http://www.pregnantwithcancer.org/

OnTrac@PeterMac Fertility Information
http://www1.petermac.org/ontrac/patient-q-fertility.asp

Fertile Action
http://fertileaction.org/

Martine C. de Vries et al. (2010), "Pediatric oncologists' attitudes towards involving adolescents in decision-making concerning research participation". Pediatric Blood & Cancer, Volume 55, Issue 1, 2010, pp. 123-128.
http://onlinelibrary.wiley.com/doi/10.1002/pbc.22510/abstract

Bleyer, A. (2010), "The Quid Pro Quo of pediatric versus adult services for older adolescent cancer patients". Pediatric Blood & Cancer. 54(2):238-41, February.
http://onlinelibrary.wiley.com/doi/10.1002/pbc.22190/abstract

Pillet, Susan (2010), "Cancer Is One More Milestone", ONS Connect, March 2010, pgs 8-11
http://www.onsconnect.org/wp-content/issues/2010/03.pdf

Orme, L; Palmer, S. and Thomas, D.M. (2008), "No-man's land: between paediatric and adult medical oncology". in: In consultation: when cancer crosses disciplines. Eds. Robotin, M; Olver, I. and Girgis, A. Imperial College Press.

Children's Hospital Westmead Transition Planning Information
http://kidshealth.chw.edu.au/fact-sheets/growing-and-moving-transition-planning-information

Children's Hospital Westmead Transition Services
http://www.chw.edu.au/site/directory/entries/transition.htm

NSW Health Greater Metropolitan Clinical Taskforce (GMCT) Transition Care: Helping young people move successfully from child to adult health services
www.health.nsw.gov.au/gmct/transition

Health Care Transition Training Program for Professionals
http://www.aheceducation.com/ELearning/CourseCatalog.aspx

Institute for Child Health Policy, University of Florida Patient Transition Resources
http://hctransitions.ichp.ufl.edu/hct-promo/

AdolescentMedicine.com
http://www.adolescentmedicine.com/home.htm

Stegenga, Kristin (2010), "What Are the Unique Emotional Needs for Adolescents Diagnosed With Cancer?" ONS Connect, March, p 11.
http://www.onsconnect.org/wp-content/issues/2010/03.pdf

Seitz, D.C; Besier T. and Goldbeck, L. (2009), "Psychosocial interventions for adolescent cancer patients: a systematic review of the literature". Psycho-Oncology. July; 18(7):683-90.
http://www.ncbi.nlm.nih.gov/pubmed/19021149

Carlo Alfredo Clerici et al. (2008), "Psychological referral and consultation for adolescents and young adults with cancer treated at a pediatric oncology unit", Pediatric Blood & Cancer, Volume 51
http://onlinelibrary.wiley.com/doi/10.1002/pbc.21544/abstract

Davis, H; Vetere, F; Ashkanasy, S; Dyson, G; Schofield, P; Thompson, K; Withers, G and Thomas, D. (2008), "Towards Social Connection for Young People with Cancer". OZCHI 2008 Proceedings.
http://dl.acm.org/citation.cfm?doid=1517744.1517804

Zebrack , Brad J. & Mills, Jennifer & Weitzman, Tammy S. (2007) "Health and supportive care needs of young adult cancer patients and survivors", Journal of Cancer Survivorship, 1(2):137-45.
http://www.ncbi.nlm.nih.gov/pubmed/18648954

Tuma, Rabiya, S. (2007), "Improving the Quality of Young Adult Cancer Care through Communication",American Psychosocial Oncology Society Annual Conference, May 2007
http://www.apos-society.org/about/news/OncologyTimes.AYA.pdf

Marc, Jan; Leimeister, Knebel, Uta; Krcmar, Helmut (2004), "Exploring Mobile Information Systems for Adolescent Cancer Patients", Technische Universitat Munchen, Germany. http://www.uni-kassel.de/fb7/ibwl/leimeister/pub/05-23.pdf

Starlight: "Back to School: Teens Prepare for School Re-entry" DVD
http://www.starlight.org/Default.aspx?id=1170&terms=back+to+school

Nessim Keeney, Susan and Katz, Ernest R. "A Parents and Teachers Guide for Kids with Cancer Book", Cancervive.
http://www.cancervive.org/books.html

"Making the Grade: Back to School after Cancer for Teens" DVD
http://www.cancervive.org/dvd.html

Keene,Nancy "Educating the Child with Cancer: A Guide for Parents and Teachers"http://www.acco.org/Information/TreatmentandSurvivorship/EducationalIssues.aspx

LIVESTRONG Returning to School resources
http://www.livestrong.org/What-We-Do/Our-Actions/Professional-Tools-Training/For-Educators/Returning-to-School

Teenage Cancer Trust UK, Learning Resource Order form
http://www.teenagecancertrust.org/what-we-do/education/learning-resource/

Onconurse: Childhood Cancer and School Fact Sheet
http://www.onconurse.com/factsheets/childhood_cancer_&_school.pdf

ASCO Cancer.Net: Cancer and School information
http://www.cancer.net/patient/Coping/Age-Specific+Information/Cancer+in+Teens/Family%2C+Friends%2C+and+School/Cancer+and+School

OnTrac@PeterMac: The Role of Schools
http://www1.petermac.org/ontrac/patient-edu-school.asp

Clinton-McHarg, T; Carey, M; Sanson-Fisher, R; Shakeshaft, A & Rainbird, K. (2010), "Measuring the psychosocial health of adolescent and young adult (AYA) cancer survivors: a critical review". Health and Quality of Life Outcomes; 8:25.
http://www.medscape.com/medline/abstract/20205922

Thompson, K; Palmer, S and Dyson, G. (2009), "Adolescents & young adults: issues in transition from active therapy into follow-up care". European Journal of Oncology Nursing, 13(3):207-12, Jul.
http://www.ncbi.nlm.nih.gov/pubmed/19539526

Jones, Barbara L. (2008), "Promoting Healthy Development among Survivors of Adolescent Cancer", Family & Community Health, January/March, Volume 31, Number 1 - Supplement.
http://journals.lww.com/familyandcommunityhealth/Fulltext/2008/01001/Promoting_Healthy_Development_Among_Survivors_of.10.aspx

Soliman, Hatem and Agresta, Samuel V. (2008), "Current Issues in Adolescent and Young Adult Cancer Survivorship",Cancer Control, January, Vol. 15, No. 1.
http://www.moffitt.org/moffittapps/ccj/v15n1/pdf/55.pdf

Tonorezos, Emily S. and Oeffinger, Kevin C. (2008), "Survival After Childhood, Adolescent, and Young Adult Cancer" The Cancer Journal: The Journal of Principles and Practice of Oncology, November/December , Volume 14 - Issue 6
http://journals.lww.com/journalppo/Abstract/2008/11000/Survivorship_After_Childhood,_Adolescent,_and.7.aspx

Bleyer, A, (2007), "Young Adult Oncology: The Patients and Their Survival Challenges", CA: A Cancer Journal for Clinicians, 57:242-255
http://onlinelibrary.wiley.com/journal/10.3322/%28ISSN%291542-4863

Zebrack, B; Bleyer, A; Albritton, K; Medearis, S. and Tang, J. (2006), "Assessing the health care needs of adolescent and young adult cancer patients and survivors". Cancer. 107(12):2915-23, Dec 15.
http://www.ncbi.nlm.nih.gov/pubmed/17103383

Maunsell, Elizabeth; Pogany, Lisa; Barrera, Maru; Shaw, Amanda K. and Speechley, Kathy N. (2006), "Quality of Life among Long-Term Adolescent and Adult Survivors of Childhood Cancer", Journal of Clinical Oncology, Volume 24, No 16 (June 1).
http://jco.ascopubs.org/content/24/16/2527.full

Abstracts: "Childhood, Adolescent, Young Adult Cancer Survivorship Research Program (CAYACS)", British Columbia Canada
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Langeveld, N. E., et al. (2004), "Quality of life, self-esteem and worries in young adult survivors of childhood cancer". Psycho-Oncology 13: 867-881
http://onlinelibrary.wiley.com/doi/10.1002/pon.800/abstract

Survivor Interviews
http://www.livestrong.org/Get-Help/Learn-About-Cancer/Survivor-Interviews

Surviving and Moving Forward: The SamFund for Young Adult Survivors of Cancer
http://www.thesamfund.org/

Young Survival Coalition
http://www.youngsurvival.org

Cancervive: Reclaiming Your Life after Cancer
http://www.cancervive.org

Healthy Lives after Cancer
http://www.cancer.ucla.edu/Index.aspx?page=833

You Can Thrive
http://youcanthrive.org/

Prepare to Live
http://www.preparetolive.org/

Voice of Survivors
http://voicesofsurvivors.org