​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
​
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
​
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. 
​
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.
​
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.
​
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 ibounce@unsw.edu.au 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.

This paper was published in the Journal of Personalized Medicine Special Issue: Genetic Counseling and Genetic Testing in Precision Medicine. Click here to read the full article. 

Background:

Clear and effective communication between clinicians and families is essential for productive and informative discussions. This is particularly important in complicated fields like cancer genetics. As the field of cancer genetics advances, so too does the terminology used in the field. Terms that were once acceptable can over time develop negative connotations or imprecise meanings to patients and their families. An example of this includes the term ‘mutation,’ previously used by clinicians and researchers to describe a patient with a disease-causing change in a cancer gene. In recent years, this term has become associated with science fiction in popular culture and disease and radiation damage in scientific literature, creating increasingly negative public perceptions. Research suggests this term is now widely misunderstood and may have negative psychosocial impacts for patients and families. Yet there are no current guidelines or literature which have identified the most appropriate term to describe a disease-causing change in a cancer gene to patients and families in the childhood cancer setting. Currently available guidelines also rarely address preferences of patients and families. For a field that is rapidly evolving, scientifically complex, and sometimes misunderstood, incorporating patient preferences is essential for best practice in clinical genetics.

Our study:

Our study aimed to identify the most appropriate term to describe a disease-causing change in a cancer gene with patients and families in the childhood cancer setting. To do this, we interviewed 25 parents with a child with cancer, 29 pediatric oncologists and 6 genetics health professionals. We asked them what their most and least preferred term from a list of four options: ‘faulty gene,’ ‘altered gene,’ ‘gene change,’ and ‘genetic variant.’ We also asked participants to describe their reasons for their preferences. 

Our findings:

Overall, we found no clear consensus within or among  our participant groups for the most preferred term. However, parents more commonly preferred terms they perceived as neutral. Regarding least preferred terms, there was some agreement among groups with most parents, pediatric oncologists, and half of the genetics professionals least preferring ‘faulty gene.’ Participants across all groups described faulty gene’ as having negative connotations and potentially placing blame or guilt on parents and children. Health professionals described challenges associated with balancing emotional impacts with scientific accuracy and understanding when delivering genetic findings to families.

This the first study to investigate multiple stakeholders’ perspectives regarding terminology to describe a cancer-related disease-causing variant in the childhood cancer setting, providing valuable qualitative insight. Our findings may have direct practice implications for genetic counselors, clinical geneticists and pediatric oncologists, suggesting that ‘faulty gene’ may have attracted negative connotations for parents of children with cancer and may no longer be appropriate to use in patient/family discussion about genetic findings. Lack of consensus in our study highlights the need for healthcare professionals to be guided by families’ preferred terminology in their discussions, while providing accurate explanations regarding implications of genetic findings. These findings may also have relevance beyond childhood cancer, such as in the rare genetic diseases space, as highlighted by engagement with this research from health professionals across a number of disciplines on Twitter. 

Click here to read the full article. ​

Background
 
Medical procedures in children are common, and can cause anxiety, pain and distress in children and in their parents or carers. Pharmacological (i.e. medication) and non-pharmacological (i.e. distraction) approaches are often used to minimise procedural pain and anxiety. Although effective, ​pharmacological approaches often cause negative side-effects. On the other hand, non-pharmacological are effective approaches which can include therapy play to promote education and coping, or distracting children from their pain or anxiety associated with medical procedures.

Screen-based technologies are increasingly common non-pharmacological resources being used to improve procedural pain and anxiety in paediatric care. They can involve passively watching a video or actively playing a computer game (i.e., interactive video games).

Though research has shown that screen-based technologies can reduce procedural pain and anxiety, we still do not know much about the effectiveness of screen-based technologies depending on the extent to which the user engages with such technologies. We might expect that active engagement with technology may result in lowered pain perception due to greater immersion with the technology. It is also unclear if interventions that educate patients about their upcoming procedure (i.e., preparatory interventions) are more effective than interventions that simply aim to reduce pain and anxiety through distraction alone. We therefore reviewed the available literature covering a 20-year period to understand the strength and nature of existing evidence.

Findings

We systematically identified, located
and accessed experimental studies that examined the effect of video games interventions on procedural pain and anxiety among children (aged 0–18
years). Through our systematic search
of the literature, we identified 36
relevant studies representing 3406
​young patients. The evidence suggests that children who used interactive video games reported less pain and anxiety compared to children who used other types of interventions (e.g. clown therapy). The studies also showed that playing interactive video games were more effective at reducing children’s procedural anxiety compared to passive games. The evidence also showed that carers of children who played interactive video games reported lower anxiety than carers of children who used other interventions.
​
Our review supports the use of interactive video games to reduce procedural pain and anxiety in children, and their carers. Although we did not observe any substantial benefits of preparatory video games over distraction-based ones. It remains unclear though about the best timing and setting to implement interactive video games to achieve the maximum benefit on patient outcomes, for example if repeated exposure may further reduce pain and anxiety in children undergoing medical procedures.
 
This article was published in the British Journal of Anaesthesia. The full paper can be found here.   
 
This post was written by Dr Christina Signorelli and Mr Sylvester Okeke.
​

This article was published in the Australian Journal of General Practice. The full paper can be found here.  
 
Cancer diagnosis is usually associated with concerns and anxieties around survival, as well as the psychosocial and economic costs of managing a chronic disease. Although this apprehension is similar across different age groups diagnosed with cancer, the experience of children and adolescents may be significantly different from the experience of adults and the elderly. The cancer experience can interfere with education and development and may constitute a major stressor to the patient as well as parents, siblings and extended families.  
 
Given that around a third of child and adolescent cancer survivors report high levels of anxiety, it is important that psychosocial care aimed at mitigating the impact of these stressful events accompanies treatment and survivorship care. This need for support extends beyond diagnosis and treatment to the long-term survivorship period, which is often focused on the management of cancer late effects. This paper curates the latest in clinical research in regards to the role of the general practitioner (GP) in providing care during and after cancer treatment. The impact of the GP, on facilitating and supporting ongoing wholistic care, is presented as a personal case study, shared by a long-term survivor of childhood cancer and his own experiences with primary care.  
 
Child and adolescents’ experiences by stage 

Diagnosis 
Lived experiences: Following a diagnosis, feelings are largely characterised by shock, fear, anger and anxiety. Coping mechanisms of denial and avoidance may also be experienced. There may also be a feeling of social isolation and concerns with body image.  
The role of the GP: At the point of diagnosis the GP may help the family to process medical information and answer questions. The GP may be mindful of the needs of other family members and ensure acute or chronic illnesses continue to be addressed amid the chaos that sometimes accompanies a new cancer diagnosis.  
 
Treatment 
Lived experiences: At this stage there may be distress associated with accepting the reality of a cancer diagnosis. During treatment children and adolescents experience both physical (pain, fatigue) and emotional (grief, anger, and fear for the future) challenges. 
The role of GP: The GP can support both the patient and their family and ensure that they understand treatment options and are engaged with all treatment protocols. This can be attained through regular communication with the patient and their family. 
 
Survivorship 
Lived experiences: Though survivors may experience joy as they celebrate survival and the completion of intense treatment regimens, they may also experience feelings of uncertainty, fear of recurrence, post traumatic stress disorder, financial toxicity, and stressors due to the ongoing need to manage multiple co-morbidities. 
The role of the GP: The GP may assume an active surveillance role for long-term effects and make timely specialists referrals. The GP has a valuable role in continuously promoting positive health behaviours and providing psychosocial support or referral for the family if needed.  
 
Bereavement 
Lived experiences: The loss of a family member is characterised by grief and changes to family dynamics (e.g., parent-child and marital dyads).  
The role of the GP: As a clinician who knew the patient and family, their ongoing care of remaining family members is important. Encouraging ongoing self-care and health behaviours, as well as support navigating psychosocial care pathways is important.  
 
Case study 
The experiences of a long-term childhood cancer survivor, seeking support for the treatment of late effects, was featured in this article.  
 
“… At age 20, I had a fertility test…It came back negative, azoospermia...Of course, the GP couldn’t change anything, but it would have been a great time to point me towards some help or support. I should have done it myself, but I was traumatised…I was referred to a specialist who treated me like everyone else, ignored my history and put me through several years of torture…I felt weak, humiliated and suicidal. Finally, when I re-engaged with the multidisciplinary team at the childhood cancer long-term follow-up clinic, I met a new endocrinologist who changed my life completely – instantly” (A survivor’s voice). 
 
Funding
The Behavioural Sciences Unit (BSU) is proudly supported by the Kids with Cancer Foundation. JM is supported by the Medical Research Future Fund, Australian Brain Cancer Mission, Brain Cancer Survivorship Grant (MRFBC000002). CEW is supported by a Career Development Fellowship from the National Health and Medical Research Council of Australia (APP1143767). CS is supported by a CINSW Early Career Fellowship (2020/ECF1144). This work has been supported by a Medical Research Future Fund (MRFF) Brain Cancer Survivorship grant (MRFBC000002). 

Brittany McGill, clinical psychologist and PhD candidate at the Behavioural Sciences Unit, recently wrote an article for ABC news on the heavy burden of decision making for young families during the COVID-19 pandemic. ​In this article, Brittany explored evidence-based psychological coping strategies to help parents manage anxiety about decision-making in situations with high levels of uncertainty, such as a global pandemic. These ideas included:
i. Shift focus to what you can control;
ii. Acknowledge that there may be no ‘right’ answer, but only what is best for your family; and
iii. Practise self-compassion and kindness to others.