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.

Background

Between 10% and 30% of school age children live with a chronic illness that has the potential to impact their participation in school. For some, chronic illness results in occasional days absent, for others, there are recurrent medical appointments and bouts of poor health requiring time away from school. Quantifying the impact of chronic illness on a child’s education and academic outcomes has been challenging. Using linked data from over 300 000 children attending NSW schools, we have examined the impact of hospitalisation for a chronic condition on NAPLAN (Australia’s standardised school assessment) completion and performance.

Findings

Our new analysis shows children with a chronic illness are more likely to miss sitting the NAPLAN, and when they do complete the NAPLAN assessment, they are more likely to perform below national minimum standards.  Children hospitalised with chronic condition even only once had 25-37% increased odds of performing below national minimum standards in reading and 36%–42% increased odds of performing below national minimum standards in numeracy. Children hospitalised for mental health/behavioural conditions, cardiovascular or neurological conditions appeared to be at particular risk of performing below standards on NAPLAN assessment.

What does this mean?

Children with chronic illness are at risk of underperforming in standardised academic assessment, and are also likely to miss assessment. Current policies and support only go part way to addressing the needs of students with chronic illness. Integrated interventions that incorporate health, education, and psychological support, specifically for students with chronic illness is desperately needed to stop these vulnerable children falling through gaps between hospital and school.

Co-authored by Dr Joanna Fardell (@jefardell) and Dr Nan Hu (@hnnathanhu)

​To read the full paper click here

Background

When children or teenagers are diagnosed with cancer, they may experience challenges like social isolation while stuck at home or in hospital, feeling “different” because of physical appearance changes like hair loss, or being excluded from social activities. Two previous research studies from more than 15 years ago also showed that young people with a history of cancer may also experience serious symptoms of social anxiety, which is usually described as the significant fear of certain social situations, in which young people experience distressing worry about how others perceive them. For someone experiencing serious social anxiety, meeting new people, attending a busy social event, or presenting in class can be really difficult things to do. Yet, these are all behaviours that are key to young people having active, normal and meaningful social lives, and thriving as they mature into adulthood.  

Around 5-13% of young people in the general population (without a history of cancer) experience such serious levels of social anxiety symptoms that they have been diagnosed with Social Anxiety Disorder. This is a mental health disorder where fear of meeting new people or participating in certain social activities is so severe that young people become very distressed and often decide to avoid certain kinds of social activities all together. Individuals with Social Anxiety Disorder need treatment from a clinical psychologist. No recent studies have tried to understand how common serious symptoms of social anxiety may be among young people with a history of cancer. We also do not know from previous studies what impact social anxiety symptoms might have on the daily life of young people with a history of cancer.  

We conducted a research study to understand: 

1. The proportion of Australian survivors of childhood and adolescent cancer who experience serious symptoms of social anxiety (suggesting they might have Social Anxiety Disorder) 

1. How survivors describe the impact of these symptoms on their daily life 

​Findings

We asked 57 survivors of childhood or adolescent cancer who were currently between the ages of 13-25 to participate. We invited them to complete one survey and one interview. Surveys were completed by 27/57 survivors, who were between 1-16 years old at their time of diagnosis.  

We found that 9/27 survivors (33%) experienced ‘clinically significant’ symptoms of social anxiety. This means the symptoms were so serious that they negatively affected young people’s functioning in daily life and signaled that young people might have Social Anxiety Disorder. In interviews, these survivors described how social anxiety caused them to have thoughts of worry and fear during social interactions, which led to behaviours like avoidance. ​

What’s next? 

We need to make sure that we pick up and treat social anxiety symptoms among young people with a history of cancer. When these symptoms are left untreated, they can last for 10 years or more, or get worse over time. Social anxiety symptoms are also linked to other social and emotional concerns, like depression, other forms of anxiety, and education or workplace challenges. Our findings suggest young people diagnosed with cancer may be at risk of serious social anxiety symptoms, so it is important for researchers and clinicians to work together to find ways to better assess and address these symptoms.  ​

To do this well, there are many questions that still need answering. We do not know if tools used to assess social anxiety symptoms in young people without a history of cancer give us a good picture of these symptoms and the unique ways they might occur among young people with a history of cancer. We also do not know when social anxiety symptoms may begin after a cancer diagnosis, or if there are certain factors that might predict which young people with cancer may develop more serious social anxiety symptoms over time. Our team is working on studies to answer these questions. We hope this will help us to better protect and promote positive mental health and healthy social functioning among young people diagnosed with cancer. 

This paper was published in the Journal of Adolescent and Young Adult Oncology. 
You can read the full paper here.

Background

Supporting a child through illness or injury that is serious enough to require hospitalisation may be the most distressing challenge a parent will ever face. Families with hospitalised children experience emotional,  social, practical and financial stress during their child’s hospitalisation. Aiming to ameliorate some of these stressors, Starlight Children’s Foundation’s Starlight Express Rooms have become an integral part of children’s hospitals across Australia. Starlight Express Rooms offer families a non-clinical, fun, and vibrant environment in which to find respite from clinical wards and to receive emotional, social and practical support. Despite a multitude of anecdotal reports that Starlight Express Rooms are appreciated by families, the Starlight Children’s Foundation identified that more research was needed to fully document the value and significance of the Starlight Express Rooms.
Results from this research can inform the on-going investment in these rooms in Australia, as well as other playrooms/recreation rooms in children’s hospitals around the world.
 
Participant information
​

• Parents of hospitalised children were eligible to participate if their child had used the Starlight Express Room in the previous 12 months.
• 123 parents completed questionnaires
  • 60 had accessed the room in Sydney Children’s Hospital, and 63 had accessed the room in Monash Children’s Hospital.
• 13 parents completed an interview

 
Findings
​
1. What are parents’ positive and negative associations with the Starlight Express Rooms?
Parents overwhelmingly reported positive associations with the Starlight Express Rooms and were far less likely to report negative associations with the Starlight Express Rooms (Figure 1). 

2. How does use of Starlight Express Rooms relate to parent and child wellbeing?
Parents who reported ‘clinically relevant stress’ used the Starlight Express Rooms more times than parents who did not report ‘clinically relevant’ stress.
Parents who reported lower child physical functioning used the room more than those who reported higher child physical functioning
3. What are parents’ most and least valued aspects of the Starlight Express Rooms?
Most valued: Parents reported that the Starlight Express Rooms gave them respite from the hospital and medical realities, while also providing their children with much needed fun and laughter. Parents also reported the importance of social support from the Captain Starlights, volunteers, and other parents using the room.
Least valued: Parents reported that the rooms were not particularly accessible for infants and very young children. Parents also wanted more access to the Starlight Express Rooms and the Captain Starlights and suggested extending opening hours of the Rooms.
 
Summary
​
Overall our findings demonstrate the overwhelmingly postive benefit of Starlight Express Rooms for hospitalised children and their families. The respite and social support provided within the Starlight Express Rooms may be particularly important for highly distressed parents and families of children with lower psychosocial functioning. It appears as though the room being a medical-free zone, the mythology of the Captain Starlights, and the emphasis on joy and fun in the room, culminate to offer a sense of escapism within the hospital, resulting in families experiencing respite and support. Nevertheless, limits to the accessibility of the recreation rooms may hinder them from providing support to families of very young children and infants, and to families of children who are critically unwell (e.g. admitted to the ICU). 

This paper was published in the Journal of Pediatric Nursing. You can read the full paper here.

Background

We know from existing research that a cancer diagnosis during adolescence or young adulthood can disrupt young people’s social development. Young people diagnosed with cancer may be less likely to graduate from higher education, or to stay employed, compared to healthy peers. Survivors may also miss school or work because of the impacts of cancer treatment. Or, they may struggle to keep up once they do return. While physical health problems, like fatigue, can be challenging, it can also be hard for young people to catch up on missed social life. Young people may find themselves socially isolated because of hospital appointments or not feeling well. Spending time away from friends, classmates or work colleagues can also lead to challenges keeping up with or enjoying social activities such as dating or activities with friends.
 
It is important to find a way to better evaluate young people’s social functioning concerns during and after cancer treatment. To do this, we wanted to first understand what social functioning means for these young people. How has it been defined in existing research? Second, we wanted to understand what tools have been used most often to evaluate social functioning in young people with cancer. Are these tools also evaluating what matters to these young people? And lastly, we wanted to identify what factors might affect young people’s social functioning during and after cancer treatment. Are there factors that researchers and clinicians could use to develop support services that prevent poor social functioning or promote good social functioning?
 
Our Review

We reviewed 37 studies on social functioning among adolescents and young adults with cancer. We have recently published our findings in the journal Psycho-Oncology.
We found that 3 definitions were used to describe social functioning among adolescents and young adults with cancer:

1. Social functioning as a domain of health-related quality of life: focused on limitations and difficulties with participation in social activities (19/37 studies)
2. Social well-being: focused on one or areas in which cancer may affect young people’s social lives, such as education, employment, financial burden, interpersonal relationships and supportive care (16/37 studies)
3. Social adjustment: focused on social skills, social behavior, peer acceptance and quality of friendships (2/37 studies)

We also found that, despite differences in definitions, most studies used health-related quality of life tools to measure young people’s social functioning. These tools focused mostly on identifying limitations and difficulties young people experienced with participation in social activities. However, qualitative studies, such as those that interviewed young people with cancer, showed us that social functioning meant a lot of different things to young people: functioning in school or work, functioning in friendships, functioning in romantic relationships, functioning financially, and more. These real-world aspects of AYAs’ social lives are not always measured by health-related quality of life tools. This means that research needs to do better at capturing all these different areas that mattered to young people.
Another important finding was how many different factors contribute to social functioning for young people with cancer.  Negative body image, feeling different from peers/comparing oneself to peers, cultural/social stigma around cancer, depression, and fatigue are key contributors to poor social functioning among young people with cancer. On the other hand, having access to adequate social support from family and friends, as well as age-appropriate and high-quality healthcare that addresses young people’s fertility and sexual/intimate relationship concerns can help to protect and promote good social functioning for these young people.

For more information or to read the full paper online, please click here.