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.
​
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?
​
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?
​
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.
​
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.
​
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.
​
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.
 

Hi, Lauren here! I work as a research officer for the Mental Health Team at Behavioural Sciences Unit. Most work days you can find me at the Kids Cancer Centre, working away on various studies and associated tasks. Recently, I have had the absolute honour of singing for Starlight TV in the Sydney Children’s Hospital (SCH) Starlight Express Room with Matt Ralph, music therapist at SCH, fabulously accompanying me on guitar and harmony vocals.  

I have always had a passion for the performing arts, particularly singing. Before moving to Sydney four years ago, I lived in Wagga Wagga and regularly performed in a variety of formats including musical theatre, radio jingles, TV commercials, live band performance, acoustic gigs and charity concerts.
​
I hadn’t really been singing and performing for the last four years but after a colleague introduced me to Matt, I was asked to sing for Starlight TV that same day and have been asked back for Starlight TV’s Friday live sessions. Music brings me such joy and it’s so nice to be able to share that joy in a meaningful way. When people thank me for singing, my response is “Thank you!” because they have given me an opportunity to sing and an outlet for my creative side that doesn’t always get a chance to be expressed. I honestly get so much positive energy through the act of singing that it is such a positive experience for me too. In fact, there is research to support this! Some studies have reported that singing can contribute to and improve personal and social well-being (Clift & Hancox, 2001; Joseph & Southcott, 2014; Weinberg & Joseph, 2017 [see also: https://www.abc.net.au/classic/features/how-music-works-what-happens-to-your-brain-when-you-sing/10115596])

My favourite experience so far has been dressing up as Elsa from ‘Frozen’ and visiting the wards. I also contacted a cookie company called Dough Re Mi to see if I could purchase their ‘Frozen’ themed cookies to give out to the kids. The company is based in Wagga Wagga and the response I received from the owner, Meredith, was overwhelming! After hearing what the cookies were for she very kindly donated them to the children of SCH. It was a special added extra to be able to visit the wards in costume and hand out the most beautifully decorated cookies to some very excited faces.
​
A big thank you to Matt Ralph for giving me this opportunity and thank you to my supervisors and colleagues who have been very supportive in allowing me to escape the office from time to time to indulge in the joy of music!
 
References
Clift, S.M. & Hancox, G. (2001). The perceived benefits of singing: findings from preliminary surveys of a university college choral society. The Journal of the Royal Society for the Promotion of Health, 121(4), 248-256.
Joseph, D., Southcott, J. (2015). Personal fulfilment through singing in a University of the Third Age Choir. International Journal of Lifelong Education, 34(3), 334–347.
Weinberg, M. K., Joseph, D. (2016). If you’re happy and you know it: Music engagement and subjective wellbeing, Psychology of Music. doi:10.1177/0305735616659552

Dr Ursula Sansom-Daly (Team leader of the Mental Health Team at the BSU) and an international team of investigators have recently been awarded the inaugural Adolescent and Young Adult (AYA) Cancer Global Accord Grant, which will provide $60,000 to support research into best-practice end-of-life care and communication for young people with cancer.

Healthcare professionals treating adolescents and young adults facing terminal illnesses like cancer often find it difficult to approach end-of-life discussions with patients and their families. However, we know that avoiding these conversations can mean worse outcomes for young patients, who are more likely to suffer from anxiety and feelings of emotional isolation surrounding their illness if their wishes for end-of-life care are not heard.

Healthcare professionals are often relied upon to initiate these conversations, but there is currently no training available to assist them in talking to young people about end-of-life. To better facilitate end-of-life discussions, the 2018 Global Accord Grant will provide funding to develop training tools for clinicians who work with adolescents and young adults with cancer. In order to develop training tools that are effective and useful for clinicians working across a range of settings, the first stage of the study will also be to benchmark current practices in end-of-life communication with young people with cancer, internationally. This international survey of healthcare professionals will feed directly into a consensus-building exercise to determine what types of end-of-life communication training diverse healthcare professionals feel is most urgently needed. We hope that the training tools we ultimately develop will provide clinicians with the confidence and skills they need to begin end-of-life discussions and improve patient wellbeing during this difficult time.

The grant, provided by CanTeen Australia, Teen Cancer America and the UK Teenage Cancer Trust, emphasises global research collaboration. Dr Sansom-Daly’s team includes 24 international researchers and clinicians from the UK, USA, Canada and New Zealand. The team will provide global perspectives on the best ways to approach end of life care conversations. Her team of local experts is joined by a number of important international contributors including Dr Lori Wiener (National Cancer Institute, USA), Associate Professor Anne-Sophie Darlington (University of Southampton, UK), Dr Hanneke Poort (Dana Farber Cancer Institute, USA), Associate Professor Abby Rosenberg (University of Washington, USA), Associate Professor Meaghann Weaver (University of Nebraska Medical Center, USA), and Dr Jennifer Mack (Dana Farber Cancer Institute, USA), among others.
​
Ultimately, the study hopes to develop tools that can be utilised by all types of clinicians involved in the treatment of young people with cancer. This will provide clinicians with the confidence and communication skills they need to address challenging end-of-life discussions with young cancer patients, in order to best support patients through to the end of their lives.