In 2007, I was 13 years old. Instead of starting high school, I was starting a 2 ½ year treatment for relapsed Acute Lymphoblastic Leukaemia (ALL). The whole goal of the first year of my treatment was to get my white blood cell count down to 0, or at least as close to 0 as possible, to ensure any leukaemia cells were not left hanging around. That meant that I essentially had 0 immune system for more than one year. With no immune system, you learn very quickly that the #1 rule is to AVOID ALL THE GERMS. That meant I had to avoid attending school, or seeing friends or relatives who had any symptoms of a viral or bacterial infection. One of the second things you then learn is how much you took for granted  going to school or work.

As I got towards the end of my treatment, in early 2009, I was inching my way closer to freedom and returning to school. But, my plans were thrown out the window as the H1N1 influenza (also known as Swine Flu) pandemic took over the US (where I lived at the time). After discussion with my doctor, my parents and I decided that I should stay home and avoid attending school for a few more months. This was perhaps the most difficult time because I was finally physically feeling better, so I felt the limitations even more.

11 years later, all of the hype around social distancing feels strange because I’ve seen how cancer patients, survivors, and anyone living with an immuno-compromising condition, have been social distancing pros for years already. It’s just that social distancing wasn’t instagram-able until the rest of the world had to do it too. So, if you’re struggling with the idea of social distancing and how you’ll cope with the foreseeable future in isolation, reach out to someone with experience (Just not in-person!). I’m sure they’ll have lots of useful advice to share!

In case you don’t know anyone with this kind of expertise, or if you’re newly living with a socially-limiting illness yourself, I’ll share with you my top 5 pieces of advice for how to manage life at home, on your own.

1. Have an accountability buddy or find ways to hold yourself accountable for your work. While I was on treatment, I was lucky to have a home/hospital tutoring program provided by my county in the US. This meant that they sent a teacher to my school to pick up my assignments from my school teachers, spend 6 hours per week in my home and go through new lessons with me. For the other 34 hours, I had to get through assignments on my own. But, expecting my teacher’s visit on the same days each week meant that I had someone holding me accountable. Alternatively, if you don’t have someone to hold you accountable, consider setting some deadlines for yourself.
2. Make a schedule for yourself – including time for things you enjoy or other tasks that you need to do around your home. Days without structure can seem fun at first, but soon they become frustrating and can contribute to a sense of hopelessness/lack of accomplishment. On the other hand, too much work can burn you out. Your brain will take some time to acclimate to being on its own (it’s amazing how much harder it is to work when you’re not surrounded by other people working). You might also have distractions around you to navigate. Consider these things when making a schedule for yourself, and possibly consult your teachers or supervisors. Making a schedule will also help you protect your personal time so you can do some things you enjoy in your free time.
3. Ensure you plan at least one achievable task/goal each day. When you’re stuck at home, it can be really helpful to get some sense of accomplishment each day, to remind you that you are making good use of your time. I always found it useful, as I started each day, to choose one achievable task that I knew I could and would get done that day. That way, whether fatigue limited my work hours or chemo-brain limited by working speed, I could still say I got something done.
4. Pay attention to your feelings and talk about them – virtually with friends, or in person with people living with you. Being at home 24 hours per day, 7 days per week gets old. Really fast. You’ll find yourself having moments of loneliness, frustration, boredom, lack of focus, etc. Pick up the phone and call a friend or relative. Use your video call service of choice to connect with your workmates or classmates. You can be physically isolated but you don’t have to be socially isolated! Also, remember that distancing and isolation don’t last forever. Whether you have to make it through flu season, a pandemic, or 2.5 years of cancer treatment, remind yourself that you just have to keep moving forward.
5. Choose a single space in your home as your workspace. When I was sick, it was my parents’ dining room table. We extended it out as far as it would go, then I took over half of it. Pick a space with as much natural light as possible, and preferably with a window nearby – it’ll help you keep awake and focused. Try to separate your work space from your leisure space where possible – like I try to limit my use of my kitchen table to work and meal times.

​
Instead of letting this adversity become problematic, it’s a great time to consider how we can find new opportunities - opportunities for each of us to learn more about ourselves, spend more time with those we live with, learn new hobbies or skills, test out new ways of working and getting things done, or helping others who may be struggling. By social distancing, we may find better ways of getting and staying connected to one another. Most importantly, we won’t take for granted how lucky we are when we can get up in the morning and leave our homes to go to work or school.

​Dr Lauren Kelada (team leader of the Family Systems and Relationships team at the BSU) recently arrived home from a trip to Norway. Dr Kelada visited the Frambu camp for siblings of children with rare disorders to collaborate on her project, SibStars.
 
SibStars aims to better understand siblings’ experiences of growing up with a brother or sister with a chronic illness, to identify the factors which impact upon siblings’ wellbeing, and to identify siblings’ information and support needs. Qualitative interviews and questionnaires are offered to parents and siblings to obtain insights into their needs and challenges.
 
During the trip to Oslo, Dr Kelada and her collaborators completed interviews with 16 siblings attending the camp. The interviews will be compared with previous interviews with Australian siblings, and will form an exciting cross-cultural study.
 
Dr Kelada has also formed an ongoing collaboration with Professor Krister Fjermestad and Professor Torun Vatne from Frambu and the University of Oslo to help adapt their SIBS intervention into a digital intervention which will be tailored for the particular needs of Australian siblings.
 
In addition, Dr Kelada filmed an interview for SIBS’ website with Prof Fjermestad. You can check it out here: http://sibs.frambu.com/index.php/2020/02/25/intervju-med-lauren-kelada-fra-the-behavioral-science-unit/  

Education and training
I completed a BSc Psychology, Queens University Belfast and MSc Applied Psychology at Trinity College Dublin. Before joining the BSU I worked in the disability sector supporting adults and children in community and residential settings, as a case manager, and as a research assistant for The Successful Ageing in Intellectual Disability (SAge-ID) Study at UNSW.


What is your current role?
I am a Research Assistant in the Ethics and Genetics team at the BSU. 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. In addition, I am working on the GenPact study which aims to better understand families’ experiences when a child is offered cancer-related genetic testing.


What are the best parts of your current role?
The best part of my current role is knowing that the work I do contributes to a wider aim of improving the treatment and psychological outcomes for children with high risk cancer and their families. I particularly enjoy interviewing parents and healthcare professionals as I find it fascinating to hear the different perspectives and experiences of precision medicine.


What are the most challenging parts of your role?
It can be challenging to hear the difficult day to day reality patients and their families face when dealing with high risk cancer. It can be difficult to reconcile that the study may not directly benefit these families who graciously contribute to our study but instead may benefit future cancer patients.


Where do you see yourself in five years’ time?
In five years’, time I would like to be studying to be or working as a clinical psychologist. I hope to one day work in a clinical role with a research element and contribute to improving the psychological wellbeing of others.
​

What advice would you have for someone wanting to follow a similar path in terms of their study/career?
My advice to be would be focus on your academic studies but not to forget about gaining relevant experience in your area of interest. I believe I have developed invaluable skills through working with several different client populations and professionals in my career. I would encourage people to reach out and seek advice from professionals who currently work in the role/industry they aim to work in. In addition, it’s important to always have willingness to seek out learning opportunities and upskill through attending training courses, workshops and lectures.

Children with high-risk cancers tend to have limited treatment options, with often devastating consequences. Precision medicine, which uses new technologies to better understand the causes of each child’s cancer and to test new treatment options, is offering new survival hope for children and their families.

As with any radical shift in medicine, challenges can emerge as healthcare professionals try to add new approaches into their practice. In this study, recently published in the Journal of Personalized Medicine, we wanted to better understand the challenges faced by doctors and scientists working on PRecISion Medicine for Children with Cancer (PRISM), an Australian precision medicine program for children with high-risk cancers (more information about the trial is available here: http://www.zerochildhoodcancer.org.au/page/4/about).

Key findings
In this study, we interviewed a broad group of doctors (including paediatric oncologists, pathologists and genetics professionals) and scientists (including laboratory scientists and bioinformaticians) working on PRISM.
 
Most professionals we interviewed were excited about the potential of precision medicine over the long-term, but were mindful of the importance of managing families’ expectations in the early stages of the trial. Key challenges for doctors, especially oncologists, included sharing genomic results with families. Doctors who did not specialise in cancer genetics told us that they felt unsure talking with families about results which might suggest that cancers ‘run in the family’. From our conversations with scientists, the overwhelming impression was that being part of such a ‘high-stakes’ trial made them feel new emotional pressures and experience new workload demands.  
 
We will use the evidence from this world-first study to inform our understanding of how best to support doctors and scientists striving for new treatment options for children with cancer.
     
This paper was led by Brittany McGill and can be accessed here at the Journal of Personalized Medicine: https://www.mdpi.com/2075-4426/10/1/9

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.
​

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
​

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