Adolescents and young adults (AYAs) aged 15-39 with cancer face developmental, psychological, and medical-related challenges. When cancer treatment is not successful and cure becomes unlikely, they can be especially at risk. There is little guidance to define and support best-practice communication with AYAs towards end-of-life.
We conducted a narrative review to address this research gap. Overall, we found that evidence points to the importance of introducing palliative care teams earlier. Additionally, it is important to explore AYAs’ preferences around end-of-life issues in a repeated, consistent manner; this offers multiple ‘openings’ to these difficult conversations, and also allows for the fact that AYAs’ preferences can and do change over time as their medical and support needs change. Our review also highlighted that AYAs may have strong preferences on a range of issues such as being able to stay in their own home, being comfortable and free from pain, and expressing their wishes to loved ones.
We highlighted a number of best-practice recommendations to guide clinicians around the critical elements of when, who, what, and how end-of-life conversations may be best had with AYAs. These included:

1. When: Introduce palliative care team members earlier during treatment to facilitate opening conversations to end-of-life concepts prior to disease/symptom-related ‘crises’ or the end of active (curative) treatment.

By introducing palliative care teams earlier, AYAs and their families have time to develop relationships with these new health-professionals prior to formal changes in care.

1. Who: Ensure the wider multidisciplinary team is confident and adequately skilled to support end-of-life conversations with AYAs.

Given that AYAs can develop relationships with various different team members involved in their care, it is important that all team members – whether it is the doctor, social worker, radiation therapist, or ward nurse – feel comfortable to talk to AYAs in age-appropriate ways if and when the young person is ready to talk about end-of-life issues. Taking this team approach is also consistent with a developmentally-appropriate AYA model of care.

1. What: Tailor the content of end-of-life conversations to the individual patient, and the unique context of the particular time point the conversation is being introduced.

There are many important topics to broad with AYAs who may die from their disease, such as preferences for pain/symptom control, ongoing active/palliative treatment, and potential place of dying/death. These topics can include thoughts and preferences about which family and friends a young person would like to have visit/close, and when (e.g., do they want visitors when they are sad or feeling unwell?); or what activities they really value and make them happy in their day-to-day lives (are there ways we can continue to make these possible as their disease progresses?). Opening conversations focused more on the identity of the AYA patients sitting in front of you (who are you, and what’s important to you?) can be a useful way to set up some of the more difficult/confronting conversations later on.

1. How: Use structured advance-care planning tools to scaffold conversations, and as a mechanism to facilitate communication between AYA patients, their families, and members of the multidisciplinary care team.

Communication tools such as the American Voicing my ChoicesTM may be useful in supporting discussion around different topics at different times. These tools can also be useful in ‘externalising’ the discussion in some ways – clinicians can refer to the fact that the tool was developed together with other young people, so the patient sitting in front of you may or may not find the topics helpful. Studies are underway, including here in Australia, to tailor this American tool to be culturally- and linguistically-appropriate to different countries.
 
Numerous gaps in the evidence base remain. For example, there is a lack of data to guide practice when disagreement between AYAs’ and their parents’ preferences exists. However, based on our research synthesis, we proposed a new model (below) to support clinicians and researchers to better understand how individual, familial, and socio-cultural factors impact end-of-life communication with AYAs in clinical settings. We hope this model will continue to spark new research questions and support clinical advocacy for AYAs with cancer and their families facing end-of-life.
Figure 1: Model of the developmental context for end-of-life communication with AYA cancer patients.
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Just one exercise physiology consultation is enough to improve motivation and exercise levels among most child cancer survivors, a UNSW Sydney study has found.

Almost three quarters of child cancer survivors increased their general exercise after just one consultation with an exercise physiologist, a UNSW Sydney study has found. The sessions were also motivational, with 9 out of 10 kids reporting they wanted to increase their fitness levels.

“Currently, less than one-third of survivors are achieving recommended exercise guidelines, but they are ten times more likely to develop cardiovascular disease than the general population,” says Dr David Mizrahi, lead author of the study and Clinical Research Officer at UNSW Medicine’s Prince of Wales Clinical School. 
Published this week in Heart and Mind, the study assessed the response of child cancer survivors and their parents to a fitness consultation from an exercise physiologist. The research involved 102 cancer survivors aged between 8 and 18 years old, with 70 families of these survivors surveyed on their satisfaction with the consultation.

96% of parents and survivors found the consultation an acceptable part of oncology care and would recommend it to other survivors. While some were eager for a consultation during cancer treatment, 4 out of 5 would prefer the consultation after treatment or in a follow-up session. 
Parents were also twice as happy with the exercise information provided when compared to routine treatment.

In each consultation, the exercise physiologist assessed the child’s cardiorespiratory fitness and body composition before creating a personalised exercise plan. Together, they set short and long term fitness goals and discussed ways to safely increase the child’s exercise abilities to their needs and preferences. 
“The kids found the individualised lifestyle support really important and helpful in their recovery,” says Dr Mizrahi.

Survivors are already at a higher risk of developing health conditions later in life, such as cardiovascular disease and diabetes – regular exercise could help minimise this risk, while also providing other physical and psychological benefits.

“Individualised and tailored guidance from an exercise professional will help mitigate the risk of developing future health problems,” says Dr Mizrahi.

Exercise and survivorship

Despite the well-known benefits of exercise to physical and psychological health, fitness consultations are not currently part of standard oncology care in Australia. 

Post cancer treatment, patients will usually have a consultation with their doctor about survivorship. This conversation may include exercise guidelines, but it really depends on the doctor, explains Dr Mizrahi.
“The doctor won’t be trained specifically in exercise science, and they have so many other things to worry about. They might mention exercise in general terms, but not exactly what and how much the patient should be doing.”

In some cases, the lack of information surrounding exercise after cancer can lead parents to be hesitant of their child moving back into higher-intensity sport – which is why Dr Mizrahi thinks it’s crucial to keep parents informed and assured that the exercise plan is tailored to their child’s needs.
“Childhood cancer is often called a family disease as well, because it doesn't just affect the child – it affects everyone around them.

“When the child is young, they will need support and encouragement from the parents to be active. It can even be something they do together, like going to the park.
“If we can make a child active, they are more likely to be an active adolescent, and in turn an active adult.”
Regular exercise isn’t just something to help the children with their physical health, but also their mental health.

“Children didn’t do anything to get cancer, but they have to live with the consequences of it for their whole lives – like being at high-risk for developing other health issues later in life.
 
“Exercise is something that’s in their control, and they can also get enjoyment out of.”

An opportunity for change 

Dr Mizrahi hopes the findings will help build the case for government to fund exercise physiology programs in oncology departments across Australia. He sees this move as not only the right thing to do, but the smart thing. 

“We have this evidence that parents and kids want this to happen – they enjoy this type of service – but it's not standard of care. Why is that the case in Australia?

“When kids are more active after cancer treatment, they may be less likely to develop chronic diseases later in life. In terms of cost-benefit ratio, the government will save a lot of money in the long run by providing hospitals with exercise physiologists.”

The use of exercise in cancer treatment is already common in some American hospitals, and Dr Mizrahi hopes to make this a reality in Australia. 

Next year, he will be travelling to St. Jude's Children's Research Hospital in Tennessee, a leading institution in paediatric oncology and exercise research, as part of his Australian-American Fulbright Postdoctoral Scholarship.

“St. Jude’s has all sorts of interventions during and after treatment, including technology such as fitness trackers and mobile apps.

“I have a lot to learn and bring back to try and improve the health outcomes for Australian cancer survivors,” says Dr Mizrahi.

This article was originally published on UNSW newsroom
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Children with high-risk cancers often have low chance of survival. Precision medicine uses genomic technologies to identify the best possible treatment options to these patients. As part of the trial, each child’s tumor is individually analysed with the hope of delivering a ‘customised’ treatment plan.

Most parents of children with cancer don’t really understand what precision medicine is, and their expectations for a direct benefit for their child can be high – that’s tricky, as this approach to medicine is new, and in most cases there’s no breakthrough drug at the end of the road yet. Managing families’ expectations can therefore be challenging for the doctors who care for them.

For scientists, precision medicine is also a completely new way of working - it’s often the first time they’ve conducted their work knowing that a sick child is waiting for their results.

This means that precision medicine comes with a unique set of challenges – and from a psycho-social point of view, establishing the evidence now to understand the experiences of families, doctors and scientists will have long-term benefits for everyone involved in precision medicine trials – on our end, we will use the evidence to develop educational resources for families and doctors and increase public awareness of the aims and limitations of precision medicine.

Key findings

In the study we interviewed 15 parents, 17 doctors and 16 scientists. For over half (66%) of the parents we interviewed, their child died from their cancer despite being part of the trial. Still, parents did not generally regret enrolling their child in the precision medicine trial. Hope that their child would benefit generally drove parents' initial decision to participate, although they knew they were advised that the trial was unlikely to yield clinically-useful results for their child. Doctors and scientists embraced the new technologies and collaborations but also reported challenges around managing families’ expectations and finding the right time to offer these tests.
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This paper was led by Dr Janine Vetsch and can be accessed here at JCO Precision Oncology: https://ascopubs.org/doi/abs/10.1200/PO.19.00235

Currently, childhood cancer survivorship care is delivered at just eight, metropolitan hospitals, presenting little access or choice for Australian survivors. As a result, more than 50% of survivors disengage from care. ‘Re-engage’ is an innovative eHealthcare intervention that allows disengaged survivors to access a multidisciplinary team of late-effects specialists from their own home, delivering a high-quality alternate model to hospital-based care.

Regular follow-up is required for many cancer survivors due to their lifelong risk of developing late-effects. Due to the toxic effect of cancer treatment on children’s developing organs, on average, each survivor will develop 17 chronic health conditions by age 50, with 5 graded as “severe” to “life threatening”. Common late effects include second cancers, cardiovascular disease, metabolic disease, and infertility. Given these serious risks, remaining engaged in lifelong care is essential to mitigate poor outcomes through prevention and early intervention. Currently, survivorship care is delivered at just eight Australian hospitals. As the most geographically-dispersed country in the developed world, this presents unacceptably limited access and choice for survivors, resulting in most survivors disengaging from care.

Engage
We are now offering ‘Engage’ - Survivors provide their health information from home via a secure web-portal, or telephone and a multidisciplinary team of specialists then deliberates each survivor’s case and develops a tailored care-plan, providing medical advice, screening schedules and specialist referral. Paper and electronic copies are provided to the survivor and their GP, and a clinical nurse consultant then provides a telephone consultation to explain recommendations and answer questions. We have completed development and pilot testing of Re-engage, with 100% of survivors (n=27) reporting that the intervention was beneficial to their healthcare.

For more information about the Engage study, visit: https://www.behaviouralsciencesunit.org/engage.html

Education and training

I graduated from San Francisco State University in 2013 with a Bachelor’s Degree in Sociology and a minor in Latino Studies. After graduating, I worked at the Center for Research and Education on Gender and Sexuality at San Francisco State University as a Research Assistant on studies examining relationship dynamics and decision-making among gay couples living with HIV, as well as a study examining contraceptive decision-making among African-American and Latina women. In 2016, I graduated from the University of California, Berkeley with a Master of Public Health in Maternal and Child Health. After graduating, I worked as a Research Associate for the Sexual Health and Reproductive Equity program at UC Berkeley’s School of Social Welfare, undertaking research to advance the understanding of what it takes for individuals to have the families they envision, to realize reproductive autonomy, and to experience healthy sexuality. Most recently, I worked at the San Francisco Department of Public Health as a Program Associate for the Collective Impact to Prevent Preterm Birth, a program bringing together city leaders to address the high rates of preterm birth among African-American women in the city.

What is your current role?

I am a Research Assistant on the Mental Health team at the BSU. I will mainly be working on the Difficult Discussions study, a mixed-methods evaluation of the acceptability and perceived utility of the advanced-care planning tool for young people, Voicing My Choices. Because this tool was developed by researchers in the U.S., this study aims to adapt this tool for use with Australian adolescents and young adults. Currently, the study is entering its second stage, in which we will conduct think-aloud interviews with adolescent and young adult cancer patients and survivors to gain feedback on suggested changes to the tool that resulted from the first stage of the study.

What are the ‘best’ parts of your current role?

So far, I have immensely enjoyed immersing myself in the data collected from the first stage of the study, learning about the experiences of young people, parents, and healthcare providers who have been touched by cancer. I am greatly looking forward to talking with young cancer patients and survivors about their experiences in the second stage of interviews. I am also thrilled to have the opportunity to work with and learn from such a diverse and talented group of individuals on the Mental Health team as well as the greater BSU team.

What are the most challenging parts of your role?
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The Difficult Discussions study is a challenging project in that it is all about initiating conversations about what to do if cancer treatment is not successful. It is disheartening to sit in a space of impending loss, but, ultimately, I am happy knowing that I will be contributing to the development of a tool that could potentially help young people find some peace and control at the end of their lives.

Where do you see yourself in five years’ time?
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It is hard to envision where exactly I will be in five years. I hope to be working toward a PhD or, at the very least, conducting research that will shed light on important and understudied topics as well as advance equity for disadvantaged communities.

What advice would you have for someone wanting to follow a similar path in terms of their study/career?

One piece of advice I always try to pass along is to always be open to learning. As someone who has worked in direct service and research, much of what I have learned has come to me from clients and study participants, often at times when I am least expecting it. Similarly, I would encourage people to listen to others’ stories. Often, peoples’ stories can get lost in research. Holding space for these stories can help us stay true to those we are trying to affect with our work. Lastly, I would also encourage people to find mentors who are committed to helping them succeed. I met my mentor six years ago and would not be where I am today without her guidance and dedication. I look forward to following her example and mentoring others when the time comes.

Childhood cancer survivors have a greater chance of developing cardiovascular disease compared to their peers and are at risk of becoming overweight at the end of treatment. Many studies have documented that survivors are leading sedentary lifestyles and exhibit low levels of physical activity. Further, our team recently identified poor cardiovascular fitness in child survivors of cancer compared to their peers.
The iBOUNCE Study is a distance-delivered program that aims to educate childhood cancer survivors about healthy behaviours such as participating in regular physical activity, fitness and reducing sugar intake. The program includes an App on a tablet which is connected to wearable activity trackers. Survivors will be asked to wear the activity trackers throughout the intervention to assess their daily physical activity levels and behaviours such as intensity of physical activity and steps walked per day.
The benefit of iBOUNCE is that it offers survivors an intervention that can be easily used in their everyday lives and does not require regular trips to the hospital. The study only requires two visits to the hospital (before and after the intervention). This is especially important for families who live in rural and remote areas who may not have easy access to allied health professionals and programs to help their child develop healthy behaviours.
Ultimately, the study hopes to foster healthy behaviours in child survivors of cancer by educating the importance of regular physical activity and healthy eating. A key strength of our program is that it provides children with fun exercises and activities that involve the family to emphasise the importance of peer support and to further facilitate behaviour change.
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The iBOUNCE Study is now recruiting eligible participants at the Sydney Children’s Hospital.
Study Inclusion Criteria:

• Child survivors of cancer aged 10-13 years old
• Finished treatment over 1 year ago
• Internet access at home

For more information, contact Lauren on lauren.ha@unsw.edu.au

To guide the development of the Delta decision aid, we interviewed 25 parents of a child recently diagnosed with cancer and 5 adolescents recently diagnosed with cancer. In following Elwyn and Miron-Shatz’s decision-making model, we examined participants’ experiences and preferences of the deliberation (process of coming to a decision) and determination (making a choice) phases of decision-making. We conducted a thematic analysis, from which we identified four main themes.
 
1) Information overload but poor understanding
Parents recalled receiving large amounts of information, but still felt that that were not well-informed. This left many parents feeling unqualified for decisional involvement. This indicates that information provision alone is not enough to facilitate decision involvement.

2) Information provision to meet individual needs/preferences
Poor understanding or unmet information needs led many parents to seek additional information, especially online. All parents emphasised the importance of being able to ask questions to their treating team. Being able to ask questions also helped parents feel empowered and part of the decision-making team.

3) Involvement in treatment decisions
Most parents wanted to be involved in major medical decisions for their child. However, many left these decisions to their oncologist because they trusted their oncologist to make the “right” decision, or because they felt they had no choice but to trust. Parents highlighted the benefit of being given opportunities for minor decisions (i.e., decisions that had the same outcome regardless of choice) for both themselves and their child.

4) Decision satisfaction outcome bias
All parents were largely satisfied with their treatment decision, but typically justified this because of the positive outcome of their child’s treatment (e.g. remission). Parents’ decision satisfaction did not appear to be based on the quality of their decision-making process.
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Adolescent findings
Due to sample size and difficulty in obtaining in-depth responses, we were unable to conduct a thematic analysis on the adolescent interviews. However, data suggests that adolescents want to be involved in the deliberation of decision, but not necessarily take the lead in determination of the decision.
 
The findings of our study highlight that decision-making in pediatric oncology should focus on involving families in the deliberation phase, rather than just determination of choice. We conclude our study with a modified conceptualization of Elwyn and Miron-Shatz’s decision-making model.

You can find the full manuscript of this study here: https://doi.org/10.1007/s00520-019-04728-x

Robertson, E. G., Wakefield, C. E., Shaw, J., Darlington, A. S., McGill, B., Cohn, R. J., & Fardell, J. E. (2019). Decision-making in childhood cancer: parents’ and adolescents’ views and perceptions. Supportive Care in Cancer. 

​Education and training
I completed a Bachelor of Science (Psychology) at the University of Sydney and a Graduate Diploma of Psychology (Advanced) at Monash University. I have always been interested in people, the human mind and what motivates people to do the things they do. I am particularly interested in working to improve the psychological wellbeing of young people, as I believe this is the most vulnerable period of life and it is important to be heard and guided through this difficult stage. I am also interested in mindfulness and how it can be used to help all people improve their relationship with their thoughts, feelings and physical experiences. I have worked several different jobs in recent years including as a Telephone Crisis Supporter at Lifeline and with Headspace delivering mental health and wellbeing programs for high school students.
 
What is your current role?
I am a Research Assistant in the Ethics & Genetics team of the Behavioural Sciences Unit. I am currently working on the PRecISion Medicine for Children with Cancer (PRISM) psychosocial sub-study. This study is investigating patients’, parents’ and healthcare professionals’ views and experiences of taking part in a personalised cancer medicine study for children with a high-risk cancer where the chance of cure with standard treatment is low. The study aims to understand the psychological implications of taking part in a precision medicine trial.
I am also working on SibStars, a study investigating the quality of life, family relationships and information needs in siblings of children with a chronic illness. Siblings of children with a chronic illness are often overlooked, however, their psychological wellbeing can be negatively impacted by changes in family dynamics and increased caretaking responsibilities. This research aims to develop a better understanding of their experiences and needs, and hopefully lead to a bolstering of protective factors and more positive outcomes for all siblings of children with chronic illnesses.
 
What are the ‘best’ parts of your current role?
One of the best parts of my current role is getting to work within a multidisciplinary team. It’s exciting to work with people from many different backgrounds and professions, as they all have different perspectives, experiences and knowledge to draw on.
I also enjoy coming to work everyday and having different tasks to work on. No two days are the same and there is always a new challenge to be tackled. I am motivated by the fact that there are always new skills I can learn and ways I can improve myself and the work I produce.
Lastly, it is extremely rewarding to be involved in research that aims to improve the lives of those dealing with the devastating effects of cancer. It is certainly motivating, yet humbling, to be contributing to such a great cause and hopefully making life easier for the patients and families affected by cancer.
 
What are the most challenging parts of your role?
It is often challenging to be confronted with the harsh reality of the patients and their families dealing with cancer. It is difficult to accept that much of the research we do is designed to find better treatments for future cancer patients and may not be of any benefit to current patients who are giving their valuable time and energy to contribute to our studies.
 
Where do you see yourself in five years’ time?
In five years’ time, I would like to be working as a psychologist or completing a PhD in one of my interest areas in psychology. I am passionate about both clinical and research psychology, so would be happy working in either domain to improve the wellbeing of individuals and the wider community.
 
What advice would you have for someone wanting to follow a similar path in terms of their study/career?
My first piece of advice would be study hard and achieve the best you can academically, as this will put you in the best position to take any path you want.
Secondly, try and gain as much experience as you can in your field. Volunteering is invaluable for getting a taste of what it’s like to work in your field and developing practical skills that aren’t offered much in school or university. Also, it’s a great way to develop your interpersonal skills and make contacts that can provide other opportunities for you in the future. Even if these experiences aren’t exactly the type of work you’d like to be doing, most professional skills are transferrable, and these experiences may spark new interests and opportunities you didn’t expect.
Lastly, I would advise that if you’re not sure what to do, then just do something. The best way to work out what your interests and passions are is by trying different things, whatever they may be, until you find where you belong. And while that may take a long time, the skills, relationships and experiences you accumulate along the way will be more than worth it. 

Since September 2018 I have had the privilege of participating in the PLuS Alliance International Interdisciplinary Researchers (PIIR) program, which connects early career researchers from King’s College London, Arizona State University, and the UNSW Sydney. The program is designed to facilitate international, interdisciplinary collaboration, and teach specific (e.g. grant-writing) and non-specific (e.g. strategies for enhancing creativity) research skills.
 
As part of the program I attended a week-long workshop at King’s College London in January 2019. Our morning sessions were led by Professor Barry Bozeman, in which we explored the common challenges of research collaboration, including authorship (discuss early, always). Professor Bozeman also covered styles of research collaboration, with ‘consultative collaboration’ argued to be the most effective. Consultative collaboration is a high-energy but high-reward approach that involves whole team communication, a high level of trust between collaborators, a commitment to open and transparent disagreement, and recognition of diverse values and objectives. 
 

​We also participated in a four-day ‘ideas lab’ facilitated by Toby Scott from ‘KnowInnovation’.

Toby skillfully led us through dynamic group-based exercises with the end goal of developing new and innovative research ideas. The value of the workshop went beyond the skills taught by Toby; the process of the workshop illuminated, in real-time, the challenges of working in groups to develop new ideas.
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It was particularly interesting to see how the human brain is wired to dislike novelty and the unexpected. It is extremely challenging to inhibit judgement and ‘let the ideas flow’.  

​Several interesting project ideas emerged throughout the workshop, across the fields of global health, psychology, sociology, climate science, and medicine. I look forward to seeing what develops over the next six months as the teams tackle the inevitable challenges of global collaboration.  

Brittany McGill is a clinical psychologist and PhD candidate in the Behavioural Sciences Unit.