This paper was published in the Genetics in Medicine. Click here to access the full article. 

Background
In the ever-evolving landscape of childhood cancer care, germline testing is emerging as a pivotal component that offers both opportunities and challenges. Our latest paper delves into the nuanced perspectives, experiences, and preferences of families navigating this complex journey, shedding light on how to best integrate germline testing into routine care.
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Germline testing in childhood cancer involves analysing DNA to identify heritable changes in genes that can predispose children to cancer. This testing not only aids in understanding potential causes of a child’s cancer, but can also have implications for treatment, cancer prevention, reproductive planning and further testing in other at-risk family members. However, the decision to undergo germline testing is far from straightforward for families already grappling with a cancer diagnosis.

Methods
We conducted a systematic review of the literature, focussing was on capturing studies exploring parent/caregiver, and childhood cancer patient perspectives, experiences or preferences related to germline testing of children with cancer. Following PRISMA guidelines, we searched four databases and identified 24 relevant studies out of 2286 articles.

Key Findings

1. High Interest and Uptake: We found a strong interest in germline testing among families, with high rates of uptake in non-hypothetical studies.  
2. Motivations: Families are driven to participate primarily by altruism and the desire to gain insights into inheritance and causation. This highlights a proactive approach where families are keen to contribute to broader scientific knowledge while also seeking answers for their own concerns.
3. Barriers to Testing: Despite the interest, several barriers emerged. Psychological concerns were common, with families grappling with the emotional weight of potential results. The timing of the testing also posed a challenge, particularly if offered at the time of cancer diagnosis or in a high-risk cancer setting. Privacy and potential discrimination were also described.
4. Experiences: The experiences of those who underwent testing were mixed. While some families faced psychological challenges, many reported positive impacts. Receiving test results often provided psychological relief and facilitated proactive decision-making.
5. Timing Preferences: While some families appreciated germline testing upfront at diagnosis, others found an early approach overwhelming preferring to have time to adjust to the new diagnosis before considering germline testing, suggesting a need for flexibility.
6. Desire for Comprehensive Results: Most families expressed a desire to receive as many germline sequencing-related results as possible, including secondary, uncertain and incidental findings.  

Conclusions
Findings provide crucial insights to guide the delivery of expanded germline testing in routine clinical care. Given experiences and preferences varied, patience and flexibility from researchers and clinical staff is paramount. Consent and result delivery should be dynamic and flexible processes, adapted to each family’s rapidly changing circumstances. Ongoing access to information and support that meets their needs, preferences, and clinical context is essential.
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Access the full text here!

This paper was published in the Journal of Cancer Survivorship. Click here to read the full article.
 
Background
Health behaviour education is very important, though often lacking in childhood cancer treatment. Health behaviour education includes, but is not limited to, physical activity and healthy eating. Physical activity and healthy eating are important habits for childhood cancer survivors (survivors) to have so they can live a healthy life after cancer. It is important to cater to survivors wants and needs when teaching survivors about physical activity and healthy eating. Therefore, we spoke to survivors, their parents and health professionals to learn exactly what they would like to see in an online physical activity program.
 
Our study
We spoke to 9 survivors, 13 parents and 18 health professionals. Before the discussions, everyone completed a survey that provided a range of online health features. The survey asked everyone to rate the importance of these features for survivors. One example of a feature was, “Providing physical activities that involve family.” The most and least important features were discussed.
 
Our findings
Most important online health features:

• Physical activity and healthy eating education
• Setting and viewing goal achievements
• Physical activities that involve family and friends
• Health professional support

 
Least important online health features:

• Quizzes to deliver education
• Viewing other participants’ physical activity levels
• Paper as a mode of education delivery

 
Design Tips:

• Videos to deliver education
• Age appropriate
• Concise

 
When do participants want online physical activity education:

• As soon as possible

Future steps
We learnt what health behaviour education that survivors would benefit from and how to deliver it. These findings helped our research team develop the new online physical activity program, Making Moves. Making Moves teaches survivors age-appropriate healthy behaviours. We hope Making Moves provides important information to living a safe and physically active life after cancer.
 
Making Moves is in the research phase and is open for participation by young people affected by cancer. You can join the study if you:

• Are currently aged 8-21 years.
• Were diagnosed with cancer under 18 years.
• Have completed cancer treatment at least six months ago OR have been on maintenance therapy for at least six months.

 
Please click here to learn more and register you or your child’s interest in participating in the Making Moves program.
 
Click here to read the full article.

Living a physically active lifestyle can improve cancer survivors’ physical and mental wellbeing, leading to an improved quality of life. However, more than 70% of childhood cancer survivors do not meet exercise recommendations. Engaging in regular physical activity is important to reduce the risk of developing chronic illnesses such as obesity and cardiovascular disease. Making Moves can be a helpful program for survivors looking for physical activity support.

 WHAT IS MAKING MOVES?
‘Making Moves’ is an 8-week online education program designed by childhood cancer survivors and healthcare professionals. This program includes education about physical activity and health, guided physical activity videos, goalsetting and 5 tailored telehealth sessions with an Accredited Exercise Physiologist. This program is delivered online, meaning you do not need to travel to participate in this program.
 
Participants who join this program will also receive a free Fitbit activity tracker to help you monitor your physical activity levels and stay motivated.
 
WHAT IS THE PURPOSE OF THIS RESEARCH?
The primary aim of this study is for Making Moves to improve childhood cancer survivors’ physical activity self-efficacy (meaning your confidence in your ability to exercise).
 
The secondary aim is to for Making Moves to improve survivors’ physical activity levels, physical fitness, depressive symptoms, quality of life and enjoyment of exercise.
 
Another aim is to explore whether Making Moves can be scaled up into the real world setting.
 
WHAT ARE THE BENEFITS OF MAKING MOVES?
The benefit of Making Moves is that it is a free online physical activity program that can be used by any childhood cancer survivor living in Australia. It has been designed by survivors, parents, healthcare professionals, and researchers. By joining this study, survivors and families can learn about living an active lifestyle and have support from an Accredited Exercise Physiologist.
 
WHO CAN JOIN MAKING MOVES?
You can take part in this study if you:

• Were diagnosed with cancer as a child prior to age 18 years.
• Are aged 8-21 years at the time of study participation.
• Have completed active cancer treatment at least 6 months prior to the time of study participation OR are at least 6 months into maintenance therapy.

 
WHAT WILL PARTICIPANTS BE ASKED TO DO?

• Complete 3 surveys.
• Complete the online Making Moves educational modules.
• Attend up to 5 sessions with an Accredited Exercise Physiologist.
• Tell us about your experience with Making Moves after you have completed the program.

​Thanks to better diagnostics, medicines and access to healthcare, the 5-year overall survival rate for children with cancer has increased from 30% in the 1960’s to over 80% in recent times. In fact, adults who had cancer as a child have a very good chance of not only surviving but going on to live productive lives, especially if they are able to access long-term, comprehensive, cancer survivorship care.
 
Children who have survived cancer face a lifelong risk of developing complex, chronic, and comorbid health concerns such as cardiovascular, endocrine and reproductive problems as well as concerns related to the central nervous system such as learning disorders, and epilepsy. In addition to this, some children may develop social, functional and mental health concerns, compromising their overall quality of life. 

​​Despite advancements being made in the treatment of childhood cancer, the challenge to provide optimal survivorship care that is feasible, engaging and equitable is a global focus. While there is recognition that long-term survivorship care should be integrated across primary and tertiary systems, clinicians and researchers acknowledge that a one-size-fits-all approach is not suitable, begging the question, how can our healthcare professionals best support cancer survivors?

​According to the study, both oncologists and general practitioners expressed their continued support for the traditional hospital-based case management approach that involves a multidisciplinary team. They believe this approach serves as a "one-stop-shop" and provides survivors with the highest level of knowledge and expertise. Multidisciplinary teams are needed to facilitate holistic care and review survivors who have unique risk profiles, surveillance, and care needs that change over the course of their survivorship period.
 
Delivering complex care encompasses risk-based surveillance, the management of late-effect comorbidities, and the recognised psychosocial impacts associated with the diagnosis of cancer. Creating an optimal survivorship care-plan requires the proactive involvement of other multidisciplinary medical specialists as well as a network of allied health professionals, bridging the gap between primary and tertiary care. 

In addition, the time and cost of delivering complex survivorship care were perceived as extremely challenging or unsustainable. 

Study findings also highlight key to achieving optimal survivorship care, one of is GPs’ low confidence in providing up-to-date care for childhood cancer survivors. This is understandable considering that GPs reported caring, on average, for only two childhood cancer survivors across their career (an average of 28 years). Nonetheless, GP-led care was seen to overcome the many logistical and financial issues families faced when trying to access tertiary-led care, which is usually localised to major urban cities. A male GP reflected on this, voicing “When the family goes up to Sydney ... it costs a fortune to stay up there and [they] can’t afford it”. In addition to overcoming these barriers, GPs are seen as facilitators of patient-centred care and provide a sense of long-term continuity and opportunity for whole-family care. 
 
Participants proposed several strategies to overcome insufficient funding, limiting the provision of survivorship services. These strategies included increasing the responsibility of lower-cost nurses (compared to oncologists), facilitating nurse-led educational programs, and creating specific Medicare Benefit Schedule item numbers. These numbers would allow hospitals and GPs to claim greater funding and remuneration for the more complex consultations that survivors need to support their care.
 
Further, harnessing distance-delivered care pathways created during the COVID-19 pandemic such as telehealth consultations may reduce some of the time/cost limitations that have been traditional barriers to accessing survivorship care. By developing more cost efficient and equitable care solutions, survivorship care will be accessible to regional and rural families, as well as the metropolitan families who do not live close to the few survivorship clinics in Australia.
 
As more patients are surviving cancer and living longer lives, the need for optimal and sustainable, survivorship care continues to grow. Fostering collaboration across primary and tertiary care is essential to building a risk-stratified model of survivor-centred care, requiring the ongoing engagement of members within a multidisciplinary team of medical specialists. Funding for roles to manage communication, points of transition, effective care dissemination and data sharing is further required, as is continued research to develop and trial such initiatives.

For full study findings, click here.

Blog written by Alexia Paglia and Dr Jordana McLoone. 

This work has been published in The Oncologist. Click here to read the full text. 

With advances in cancer treatment, more than 80% of children who are diagnosed with cancer are surviving well into adulthood. However, despite increased survival, childhood cancer survivors face significant risk of developing late effects from their cancer and/or it’s treatment which develop years or even decades down the track. In fact, childhood cancer survivors report twice as many severe chronic health conditions by age 50, compared to healthy controls, and have 10-times the rate of mortality compared to the general population.
 
The late effects of cancer include physical and psychological concerns, both of which may significantly impact a survivor’s quality of life. As such, there is an urgent need to understand and systematically appraise the consequences of surviving cancer, across a range of cancer types and treatments. 
 
Our recent study, ‘Childhood cancer survivors’ reported late effects, motivations for seeking survivorship care, and patterns of attendance’ assesses the late effects experienced by childhood cancer survivors, across all cancer diagnoses, as well as survivors’ views of engaging with survivorship care. 
 
Understanding the late effects of childhood cancer
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The physical late effects of childhood cancer and its treatment include, but are not limited to; second cancers, late mortality reproductive and endocrine problems and cardiovascular disease, all of which can negatively impact a patient’s quality of life. Concerningly, studies in North America have estimated that the cumulative incidence of late effects, 45 years post-diagnosis is as high as 95%. Notably, survivors frequently suffer from more than one late effect, with 81% of late effects estimated to be severe, disabling, life-threatening or resulting in death. Our study showed that late effects are associated with more intensive cancer treatments such as toxic chemotherapies and radiotherapy. This is because exposure to toxins such as chemotherapy alongside other factors including genetic predispositions, comorbidities, demographic factors and negative health behaviours directly influence a survivor’s risk of developing late effects. 

For example, many survivors experience frailty, which not only increases their risk of chronic disease and mortality but is also associated with poor mental health. 

While some late effects of therapy may be easily managed during childhood, other conditions may persist well into the survivor’s adult years with the potential to manifest as chronic health concerns. Considering this, it is critical that a patient’s acute treatment needs are balanced against the potential for long-term toxicity and that they are engaged with long-term, survivorship care.
 
Engaging with survivorship care
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Given the number of childhood cancer survivors are increasing, there is need to provide quality survivorship care so that late effects can be better managed and potentially mitigated. Follow-up care for cancer survivors includes monitoring for cancer recurrence, detecting any new cancers, treating ongoing symptoms, monitoring for late effects and receiving preventative care.
 
In Australia, less than half of survivors attend a survivorship clinic. It is most commonly survivors who are younger, closer in years to their diagnosis, or who have reported a high total number of motivating factors. Notably, all participants in our study endorsed at least one motivating factor for engaging in survivorship care. Survivors shared that understanding possible late effects, being reassured about their health, and knowing which tests they needed to stay healthy were the most important reasons to stay engaged with survivorship care. Given that survivors felt so strongly about the benefits of receiving survivorship care, it is concerning that less than half can engage in such care.
 
Looking forward

Despite improvements in cancer treatments and survival rates, childhood cancer survivors still experience a range of health problems, even decades after treatment completion. Survivors want to learn more about their risk of developing late effects and the tests they need to maintain good health, as well as seek reassurance about their wellbeing. By better understanding the burden of late effects and what survivors need and want within survivorship care, we can design more patient-centric survivorship clinics to ensure a better health future for survivors of childhood cancer. 
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Alexia Paglia & Dr Jordana McLoone

 What is your current role? 

I am a current PhD student under the supervision of Dr Jordana McLoone and Dr Ursula Sansom-Daly.  My working thesis title is A narrative exploration of how children experience and ascribe meaning in their lives when their parent is diagnosed with cancer. 
 
What are the best parts of your current role? 

Intellectual freedom.  I am grateful to have crafted a research topic which aligns so closely to my area of interest, and for the Graduate Research School and Faculty to see value in me exploring this field of inquiry.  I have most enjoyed discussing my research questions with experts in the field and hearing their advice and suggestions in how I can build out my research project, particularly around protocol development.   
 
What are the most challenging parts of your role?  

As I near the end of my first PhD year, one of the biggest challenges so far has been synthesising the enormity of literature.  At times it has been overwhelming reading the vast amount of research and trying to find a home for it in some way.  As an emerging scholar every little piece of information seems really relevant.  A skill I would like to strengthen is my ability make sense of the research, determine its relevance to my area of inquiry and being patient if at first it doesn’t seem to fit anywhere.  Making sense may occur later in my research years.   
 
Where do you see yourself in five years' time? 

I will have completed my PhD by this time!  In line with my initial interest of evidence-based practice, I would love to be working in cancer research where meaningful clinical impact is being achieved through translational research improving outcomes for children affected by cancer.  I also would love to explore international post-doc cancer research opportunities as part of my five-year plan.  
 
What advice would you have for someone wanting to follow a similar path in terms of their study/career? 
 
Starting my PhD as an ‘older student’ was frightening.  But sometimes life goals are created following certain life experiences and for me this was very much the case after being diagnosed with cancer in 2021 at 34 years.  Drawing on my past career interest in understanding how children experience significant life-altering change and my current health experience, I thought there was an unique opportunity in bringing these two areas together.  I’m in awe of other survivor-researchers in the cancer arena and it is a true privilege to be able to walk the same path.  So, my advice is, don’t let age deter you from pursuing your goals!   

Each year, an estimated 400,000 children and adolescents aged between 0 and 19 years develop cancer, the most common types being leukemia, brain cancer, lymphoma and solid tumours such as neuroblastomas. Owing to rapid advances in medical treatment, and supportive care, around 80% of these children will survive well into their adult years; a huge increase since the mid-1970’s. However, beyond the statistics lies the physical and psychosocial challenges that come with cancer survivorship. Survivors face the very real threat of recurrence and the risk of developing a second cancer.
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Childhood cancer survivors are at increased risk of developing a recurrence of their primary cancer compared with the general population’s risk of developing cancer. In addition to this, childhood survivors are 5 times more likely to develop a second cancer, with elevated risk continuing into the sixth decade of life.

For survivors and their families who have already braved the physical and emotional battle against cancer, the threat of cancer recurrence and risk of developing a second cancer can manifest psychological distress, including anxiety and fear of death as well as depressive symptoms such as the loss of hope for recovery and difficulties dealing with their disability. Survivors may also experience appetitive difficulties such as anorexia, poor body image and anxiety dealing with their pain.

Our recent study entitled; “It just never ends”: Childhood cancer survivors’ perceived psychosocial impacts of recurrence and second cancer” examines childhood cancer survivors and their families’ perspectives on being diagnosed with a second cancer, or a recurrence of their primary cancer.

​Strong emotional and psychological impacts
Most participants experienced feelings of helplessness, anxiety, worry and trauma when their cancer recurred; a 26-year-old, female survivor with secondary carcinoma voiced “There has been a lot of depression…and chronic pain”. Other patients described their experience to be like a “kind of rollercoaster” and felt as though they were entering a figurative “no man’s land”. More so, some survivors reported experiencing severe post-traumatic stress disorder (PTSD), with others developing strong phobias for hospitals and needles. The study further highlights how survivors felt that a great deal of their pressure and anxiety stemmed from having to make important medical decisions without being given enough time to fully process the risks and side effects of the cancer treatment. 

​Considering the psychosocial impact of cancer, it is understandable why some patients may see avoidance as a way of ‘moving on’ from their cancer experience or regaining a sense of normalcy. Nonetheless, literature shows that poor awareness of late effects is linked to low-risk perceptions, poor adoption of health behaviours and in turn, an increased risk of recurrence or second cancer.

Health behaviour adherence
Interestingly, the study reported that despite having experienced a primary cancer, as well as a recurrence or second cancer, some survivors still felt ambivalent or even reticent towards receiving information about the cancer-related health risks that they may develop. Some survivors also resisted adopting protective health behaviours, such as avoiding alcohol, smoking, and using sun protection. In fact, the use of sun protection is the least practiced health precaution among childhood cancer survivors despite evidence that the majority of second cancers are skin neoplasms. 

​What can survivors and health professionals do to help?
And so, the question remains, how do we mitigate these risks? The literature suggests that by incorporating health-education programs into survivorship care survivors may feel assured that solutions are available to prevent or intervene early and can contribute to a perception of ‘preparedness’ in the event of cancer recurrence, and/or the development of a second cancer. To ensure knowledge dissemination and optimal receptiveness, these programs should be delivered in a way that is educational and places emphasis on causal pathways that can be avoided or minimised and positive health management, rather than simply describing subsequent cancer risks.

​With more and more children surviving childhood cancer, it is critical that recurrence and second cancer risk information is not only conveyed accurately, but also in a manner which will reduce fear of cancer recurrence and increase health behaviours for the prevention and early intervention of subsequent disease.  Together we look forward to building a path towards a better health future for patients and their families. 

You can read the full paper here.

Blog post written by Alexia Paglia and Dr Jordana McLoone. 

There are numerous benefits to maintaining an active lifestyle to improve late effects of cancer for childhood cancer survivors. However, >70% of survivors do not meet the recommended physical activity guidelines and have below average fitness levels.
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AJ is a childhood cancer survivor who is on a mission to raise awareness for the importance of scientific research in supporting kids with cancer. AJ chats to Dr Lauren Ha about her research and some exercise tips for children and adolescents affected by cancer. 

The iBounce pilot study is a digital health intervention designed to educate and engage 8–13-year-old childhood cancer survivors about physical activity and fitness. iBounce uses a slightly modified version of ‘iEngage’, an evidence-based health education program connected to wearable activity trackers that provides children without chronic disease with health knowledge and practical kills to improve their physical activity levels. Lead researcher and accredited exercise physiologist, Dr Lauren Ha, adapted iEngage to create the home-based iBounce intervention by modifying physical activities, educational content, and including a component to engage parents into the program.

Findings

The primary aim of this study was to investigate the feasibility and acceptability of childhood cancer survivors using the iBounce intervention. In total, 30 participants opted in, of whom 27 (90%) completed baseline assessments and 23 (77%) commenced the iBounce program. The opt-in rate was 59% and most survivors (19/23, 83%) completed the intervention. The retention rate (70%) and activity tracker compliance (79%) were high, and there were no intervention-related adverse events.
In terms of acceptability, survivors rated the program as enjoyable (75%) and easy-to-use (86%), but many survivors were not satisfied with the activity tracker (60%) potentially due to the technological issues that occurred.
Preliminary efficacy results showed that the iBounce program significantly improved survivors’ fitness levels after the intervention.
We demonstrated that iBounce is feasible for delivery and acceptable among survivors, despite some technical difficulties. The distance-delivered format provides an opportunity for survivors to engage in health behaviours at home, including families living in regional or rural areas.

Future directions

We will use these pilot findings to evaluate an updated version of iBounce. Dr Lauren Ha is currently conducting focus groups with childhood cancer survivors aged 8-21 years, parents of survivors, and health professionals to explore their priorities of using digital health to improve physical activity levels. If you are interested in contributing to designing and upgrading the iBounce program, please email [email protected] with the subject title as: iBounce focus groups. 

Impact

The impact of the iBounce program has been very positive. Kingston, a 10-year old lymphoma survivor was a participant in the iBounce pilot and recalls his improvement over the sessions. Kingston experienced muscle loss and fatigue during his cancer treatment. After completing the iBounce program, his fitness has improved and he is now preparing to play representative soccer in the UK. Read the inspiring story here published by The Sydney Morning Herald.