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.

Get active with activity trackers!

Wearable activity trackers have been growing in popularity over the past few years. A benefit of using a wearable activity tracker is the ease of monitoring how much physical activity you’ve done for the day, simply on your wrist or smart phone. There are a wide variety of trackers available with several features which not only track your step counts, but also calories, distance walked, time spent in moderate to vigorous physical activity, and/or sleep.

​It’s very common that people often overestimate the physical activity they are doing. Using a wearable activity tracker could be a great motivational tool (that does not lie to you) and might even empower you to engage in more physical activity.

The use of wearable activity trackers to monitor physical activity levels and to motivate children and adolescents is growing in the field of paediatric oncology.

Why are activity trackers relevant for paediatric cancer survivors?
Many children and adolescents on cancer treatment, or who have finished cancer treatment, do not participate in adequate physical activity levels. Physical activity is essential for young people as it helps to improve fitness, muscle strength and, most importantly, helps to reduce the risk of chronic illnesses such as cardiovascular disease. Childhood survivors are at risk of developing treatment-related chronic illnesses, including cardiovascular disease, obesity and secondary cancers, so encouraging them to be active is particularly important.

Do wearable fitness trackers encourage people to be active, or are they just more convenient to track (rather than writing things down, etc.)?
Activity trackers that provide feedback to the user (i.e., step counts or time spent in (MVPA)) have the potential to motivate and engage people to increase their physical activity levels; however, further research is needed to understand how activity trackers can be effective at improving physical activity levels when incorporated into different interventions.

How can oncology nurses use this data to discuss the potential benefit of wearable trackers with their patients?
Oncology nurses can discuss with patients the importance of physical activity and the potential benefits of using an activity tracker to monitor how much physical activity they are achieving. They are widely available and can provide a breadth of information including intensities of physical activity, duration of physical activity, energy expenditure, sleep and time spent in sedentary behaviours.

Little Big Steps
I recently found out about Little Big Steps, a charity championing physical activity for paediatric cancer patients. The charity was founded by two mums, Cass and Cindy, and the whole idea for Little Big Steps arose when Cass gave her son Lochie a fitness watch for his 8th birthday. Lochie who had been spending increasingly more time in bed due to the nature of his gruelling treatments, was on his feet getting his steps count up, seeking out physical activity just to see the progress on his new watch. Not only did his mood improve, but he was coping better with his treatments as well, all thanks to those small steps he was taking every day.

Three years on and Lochie is now in remission, and Little Big Steps is going strong - funding research into the benefits of physical activity during cancer treatment for kids, and providing Fitbits to kids across Australia who are battling with cancer.

If you would like to support Little Big Steps and help get kids with cancer moving, head on over to the website and make a donation today. You can also follow Little Big Steps on Facebook or Instagram

https://www.instagram.com/littlebigstepsaustralia/
https://www.facebook.com/LittleBigStepsAustralia/

To read the full interview with our exercise physiologist and PhD student, Lauren Ha, click on this link: Wearable Fitness Trackers May Improve Health in Childhood Cancer Survivors (oncnursingnews.com)

For adolescents and young adults, going through cancer treatment can be really tough. Sometimes it’s unclear how things are going to turn out. There may be difficult conversations that young people want to have with family, friends, and their healthcare team that they might not have the words for.

​When there is so much uncertainty related to the future, being able to put words to their concerns can help young people feel more in control and have more of a say in their care and treatment.
​
Voicing my CHOiCESTM
Voicing my CHOiCES™ is an advance care planning tool for young people, developed by a team in the United States to give young people a way to express the things that are important to them - their thoughts about how they want to be comforted, supported, treated, and remembered.

Advance care planning is a series of steps that a patient, their family and healthcare professionals can take to make sure that the patient’s values, choices and decisions can be communicated in the future, if they were no longer able to do so themselves. For adolescents and young adults these steps are often recorded in a booklet, such as Voicing my CHOiCES™. Helping young people to express their preferences is really important for allowing them to achieve good quality of life and to live their lives to the fullest.
​
What this study aims to achieve
We have recently developed an advance care planning tool specifically for Australian young people for when it is not certain that their cancer can be cured. Our team evaluated the American Voicing my CHOiCES™ tool with Australian young people, their families and healthcare professionals. The next step is to evaluate this new Australian version of the Voicing my CHOiCES™ tool. Having an Australian advanced care planning tool will ensure young people’s voices are heard if their treatment does not go to plan or takes an unexpected turn.

​Together with our consumers and stakeholders, our team has adapted the language, content and structure of the tool to better suit Australian adolescents and young adults living with cancer. This has been an important step: not only to make the tool more relevant to our Australian healthcare system, but also to make the tool ‘speak’ in language that makes sense to Australian adolescents and young adults.
We’ve had help from the Australian Medical Association Queensland to update the tool’s look and graphic design to better suit Australian young people’s preferences and needs.  The result is a tool with a more Australian flavour, and a look that our consumers felt was more inviting and engaging for them. Using tools like this can help us to help patients, families, and health-professionals alike navigate the murky waters of, “What next?”

If you’d like to read more about this study you can check out Ursula’s blog post on Oncology News - https://oncologynews.com.au/talking-about-dying-is-never-easy/
 
You can also read more from the team on the communication needs of young people with cancer here - https://www.liebertpub.com/doi/full/10.1089/jayao.2019.0084
 
If you’d like to be involved or find out more about evaluating the new Australian Voicing my CHOiCES™, get in contact with our Chief Investigator Ursula via the details below, or leave us a message on the website (https://www.behaviouralsciencesunit.org/difficult-discussions.html)
 
Ursula Sansom-Daly
Email: ursula@unsw.edu.au
Phone: (+612) 9382 3114 

Chronic Kidney Disease (CKD) is a severe, multi-organ condition that can dramatically interfere with patients’ quality of life. Children and adolescents are at increased risk of premature death and commonly experience a range of co-existing illnesses, including cardiovascular disease, mineral and bone disorders, intellectual impairment and impaired growth. The genetic underpinnings of CKD are increasingly being realized. As a result, genetic testing has become integrated as a component of standard care for children and families, to inform more accurate diagnoses and to guide more effective therapies.
 
Although the genetic diagnosis can be important for clinical care, the impact of genetic testing on children and families is not well understood. To address this, our team set out to investigate the experiences of families 26 Australian families who received genetic testing for their child’s kidney disease. We carried out in-depth interviews with parents to understand the psychosocial impacts of genetic kidney disease and to identify their information and support needs.
 
 
Parents’ Experiences of Genetic Testing
Our findings demonstrated that genetic testing can be an “emotional rollercoaster” for families. Parents were motivated to have genetic testing for their child in the hope that the test results would enhance their child’s clinical care and improve outcomes for their child. It was particularly important for parents to feel supported by their child’s treating clinical team when undergoing testing to ease levels of anxiety awaiting the test outcome. Regular communication between families and their child’s treating team, with clear and compassionately delivered information increased parents’ levels of trust and helped them to feel reassured.
 
The Psychosocial Impact of a Genetic Test Result
Parents expressed positive attitudes towards the genetic diagnosis when it improved their understanding of their condition and provided them with insight into possible outcomes. Emotional benefits associated with receiving the genetic diagnosis included providing a sense of closure and opportunity to prepare for their child’s future emotionally and practically. Parents often reported that the genetic diagnosis empowered them with information to optimally manage their child’s kidney disease and to explain their child’s condition. Many parents found that the genetic diagnosis helped them to connect with peer support groups. Importantly, getting connected with a shared community reduced social isolation and improved parents’ capacity to adapt to their child’s diagnosis.
 
However, timing was important for families and delayed diagnoses and genetic diagnoses that had less of an impact on their child’s clinical care were described to be discouraging. Often families expressed profound uncertainty for their child’s future and how the genetic diagnosis would progress. Our families told us that they would have benefited from having condition specific resources and improved communication tools to explain the range of timeframes it could take to receive a genetic diagnosis. Guidance on how to appropriately explain their child’s genetic CKD in an age-appropriate manner was frequently desired. Parents reflected that establishing peer support groups for adolescents living with CKD would be a valuable.
 
Preferences for Genetic Information.
Parents felt “overloaded” with emotions during clinical genetics appointments, which made it hard to absorb complex genetic information. Time to process the content delivered during genetics appointments was important and parents reported that accessible, take-home resources helped them to “digest” genetic information.
Parents were aware that genetic research was advancing, and this gave some parents increased hope for their child’s future. Being knowledgeable and keeping updated with research developments regarding regarding their child’s genetic diagnosis was considered important. An accessible, online platform with expert information specific to their child’s genetic condition was the preferred format for this information.
 
Considering the critical need for fast-pace information required by parents and families undergoing genetic testing. We hope that our findings will promote and inform the development of accurate and accessible resources that address the holistic needs of families and children with genetic kidney disease.
​
You can read more about this research here

Children and adolescents affected by cancer are at increased risk of health problems, such as developing cardiovascular disease because of the treatments they received. Some factors that can lower the risk of cardiovascular disease include regular physical activity and a healthy diet. However, survivors of childhood cancer do not do enough physical activity and have low fitness.

Wearable activity trackers such as the Fitbit, have become popular devices for children and adults to monitor their steps and act as a motivating tool to help them be more active. Researchers have lately used activity trackers to help children and adolescents affected by cancer to increase their physical activity levels.

Our study
Our team performed a systematic review to explore how wearable activity trackers were used to measure and improve physical activity levels and other health outcomes. We recently published our findings in the Journal of Adolescent and Young Adult Oncology.
We also identified intervention features (e.g. health professional contact) that were common among studies that achieved improvements in physical activity or other health outcomes (e.g. fitness).

Our findings
We conducted an electronic search across four databases and identified 3187 relevant articles. After screening all articles, we included 12 studies in our final analysis.
We found:

• 5/12 studies recruited childhood cancer patients during their cancer treatment
• 2/12 studies recruited children on maintenance therapy
• 5/12 studies recruited survivors of childhood cancer
• Two different types of activity trackers were used:
  • Activity trackers used as a measuring tool that did not provide any information to the user (non-feedback)
  • Activity trackers used as a self-monitoring tool that did provide information to the user (feedback) e.g. step counts
• Two studies that used non-feedback activity trackers reported increases in physical activity.
• Six studies (50%) found improvements in health outcomes such as decrease in negative mood, increased motivation, improved body coordination, increase in quality of life, and improvements in fitness.
• Intervention features included health professional support, peer or parental support, education, goal setting, distance delivery, and individualisation of programs, messages or information (i.e. tailored specifically to the participant). However, many studies were different in study design, study characteristics and populations. We could not conclude which intervention features might have contributed to increases in physical activity.

Survivors of childhood cancer can experience many health problems as a result of their treatment. Survivorship care provides the opportunity for the prevention, screening, and proactive management of these health problems. Yet unfortunately many survivors do not receive the care that they need because they are unaware or are unable to get access to clinics. New models of survivorship care are needed to help survivors overcome these barriers to care. Our team developed a new program for childhood cancer survivors, called “Re-engage”, to help engage, educate, and empower them with the skills and knowledge that they need to self-manage their survivorship care.
 
​Our study
We recently published the findings of our pilot study in the Journal of the National Comprehensive Cancer Network. For the pilot study, we wanted to evaluate if Re-engage was feasible (i.e. can Re-engage be easily and conveniently completed by clinicians and survivors?) and acceptable (i.e. do survivors and healthcare practitioners like using the Re-engage intervention?).

We also wanted to collect early evidence of Re-engage’s impact on survivors’:
 - confidence in managing their care and completing their survivorship recommendations
 - engaging in recommended healthy behaviours (e.g. exercising, not smoking, eating healthily).
 





Our findings
Twenty-seven survivors completed the Re-engage pilot program. Using surveys, we asked participating survivors questions to understand their experience of Re-engage including feedback on what they liked and would change about the program. We found:

• 100% of survivors reported Re-engage as beneficial to them
• 92% of survivors reported Re-engage was easy to complete and to access
• 96% of survivors were happy with the amount and quality of information and help they received.
• Two survivors reported enjoying the remote delivery of Re-engage and that by doing Re-engage over-the-phone or online, it made it easier for them to coordinate their care.
• Survivors’ engagement in health behaviours (e.g. exercise) remained similar preintervention, postintervention, and at follow-up. However, they were more likely to have a regular GP who could help to encourage healthy behaviours beyond the program.

 
What’s next?
Our pilot study findings showed that Re-engage is acceptable and feasible, and early evidence suggests that Re-engage has the potential to empower survivors in coordinating their care and increasing their satisfaction with care. However, this study was only conducted with a small group of survivors and our next step is to run a much larger trial survivors in order to really understand Re-engage’s potential impact. In this new trial, we are also collecting data which will help us to implement this program into clinical practice after the trial ends.

If you would like to know more about Re-engage, including how to get involved, please click here.

The Re-engage pilot study was supported by Cancer Council New South Wales and The Kids' Cancer Project. ​

The team are very excited to share the findings of our Australian-first study on a parent-led dietary intervention to help re-establish healthy eating habits in young survivors of childhood cancer. In this blog post, we answer some of the most interesting and important questions about our project!

• Why did we develop ‘Reboot’?

 
Extraordinary improvements in how we treat children’s cancer means that over 80 per cent of children will successfully recover from their cancer diagnosis. The not-so-good news is that many young survivors of childhood cancer are at increased risk of serious diseases such as diabetes, obesity, and heart disease because of the long-term side effects of their cancer treatment. Although good eating habits after cancer treatment can help to protect young survivors from serious illness, cancer treatment typically turns children’s eating habits upside down. Common side effects of cancer treatment such as Nausea, vomiting often make eating difficult and children simply can’t ‘stomach’ most foods. After eating a very limited diet of simple carbohydrates and processed foods parents can find it very difficult to switch children’s food preferences back to healthier options like vegetables when their child’s cancer treatment finishes. This can make mealtimes very stressful for families and many parents can feel overwhelmed about how to manage fussy eating. To address this problem, we designed and evaluated ‘’, a four-week, four-session program delivered to parents by telephone soon after their child had completed cancer treatment. The key finding of our study was that parents reported feeling more confident in providing a healthier diet to their child after participating in our program. This means can benefit from
learning strategies on how to promote vegetables and fruit to children.

• What does ‘Reboot’ add to what we already know?

 
Our study adds important new knowledge about what we already know about the eating habits in young cancer survivors. World-wide, studies show that the diet quality of children who have finished cancer treatment is very poor. Most young survivors of childhood cancer consume excessive amounts of high kilojoule, low nutrient foods or ‘junk-foods’ and very little vegetables and fruit. Poor food choices after cancer treatment suggest that the negative impact of cancer treatment on children’s food preferences is difficult to reverse and can persist without early intervention. Currently, we don’t have any evidence-based dietary interventions for young cancer survivors in Australia.

• What findings did we find surprising?

The good surprise was how well parents of young cancer survivors responded to . Nearly all parents who started the program completed all four intervention sessions. When we surveyed parents after the intervention, all parents perceived the program as useful, and reported feeling more confident about how to offer and provide vegetables to children again. The not-so-good surprise was that fewer parents responded to our invitation to participate in a healthy eating program than we anticipated. We believe that the telephone format may have deterred some families from taking part. We know that families are very busy and fitting in scheduled telephone sessions can be particularly tricky. To help encourage more families to participate, we have turned into an online program, ‘-KIDS’ that parents can now complete in their own time with the benefit of optional telephone support.

• What excites us about ‘Reboot’?

We are excited that parents of young survivors found a distance delivered dietary program useful. Because cancer survivors live all over Australia, could potentially be delivered to all parents of young cancer survivors who are struggling with fussy eating.

• How does ‘Reboot’ contribute to Australian research?

In Australia, trials of a brief parent fruit and vegetable program in children not previously treated for cancer (‘Healthy Habits’) have achieved significant increases in children’s vegetable and fruit intake. As a next step, we sought to investigate whether this type of healthy eating program could be modified to benefit young cancer survivors and their parents.

• How important is this research project in Australia and overseas?
• is the first of its kind in Australia and the first intervention of its kind, world-wide, to specifically target strategies to promote vegetables and fruit intake in this at-risk population.

 

• What are the limitations of our project?

Limited resources meant that we could only promote to parents of young survivors treated at one hospital. This meant that we couldn’t advertise our program to all parents of childhood cancer in Australia and didn’t get as many parents enrolled in our program as we had hoped. It is still unclear if parents of young cancer survivors are interested in a dietary parent program and are likely to use this program if it was available in the community. The small sample size limited the diversity of our participants and we tended to have parents living in areas associated with a higher socioeconomic ranking than parents who decided not to participate. As a first step, we focused on evaluating whether was acceptable to parents and could be delivered using the same methods and design features evaluated in children not previously treated for cancer (‘Healthy habits’ program). Although we know that parents found it useful, we also don’t yet know whether it increases survivor’s intake of vegetables and fruit.

• What do we aim to do next?

The pilot of meant that we could explore what worked well and what didn’t work so well. We are using these exploratory findings to offer a modified version of to more parents of young cancer survivors. We are about to launch a randomised controlled trial to compare the impact of -Kids, an online and telephone delivered parent program, compared with no intervention, on young survivors’ intake of vegetables and fruit. This trial will use social media and community cancer organisations to advertise the study to potentially reach a greater number of parents. The use of a ‘wait-list’ control means that all parents will be offered the program. The only difference between parents who are randomised to the intervention group and parents who are randomised to the control group, is when they receive the intervention.

• Who funded our project?

We are very grateful to all our funders who have made this project possible. This study was originally funded through the Kids Cancer Alliance, The Cancer Institute NSW Sydney, Australia (Grant Number; 11/TRC/1-03). This project is also funded by a Cancer Council NSW Program Grant PG16-02 with the support of the Estate of Late Harry McPaul. 
 
 
If you would like to learn more about -Kids, visit our webpage at: https://www.behaviouralsciencesunit.org/reboot-kids.html or contact our team at reboot@unsw.edu.au. You can also read more about one parent’s experience in the Reboot program in an interview with the Kids Cancer Project at: https://www.thekidscancerproject.org.au/stories/march-2020/food-for-thought
 For more information about Reboot, please see here newsroom.unsw.edu.au/news/health/rebooting-healthy-eating-habits-child-cancer-survivors
​To read the paper in full click here
​

In a new commentary piece on Oncology News, Dr Ursula Sansom-Daly and Associate Professor Carline Ford bring attention to important issues in scientific and medical research that have been barriers for women in research for far too long. Ursula and Caroline discuss the disparity in at-home caring duties between men and women, and how this is having an impact on publications and grant applications – especially now during the COVID-19 ‘lockdown’. Ursula and Caroline also discuss how the COVID 19 pandemic could be (and should be) the catalyst for systemic change in academia, and particularly for academic conferences.
 
Conference Travel
While attending and presenting at conferences is a core aspect of contributing to research, the travel aspect of this, that is almost always non-negotiable, makes conference attendance almost impossible for many early career researchers with young children, or those with elderly or unwell family members.
Conferences are vital for development of research ideas, presenting outcomes from research and have important networking opportunities for early career researchers to connect with international researchers for collaborations.
Despite changing societal expectations around the distribution of caring and domestic duties in the home, women still disproportionally carry the load of this work, making conference attendance even harder.
 
Are there any equitable solutions for this?
The obvious solution is for researchers with children to just bring their children along, but this isn’t always possible and presents a whole new area of problems to be dealt with. For example: what do the kids do while you’re trying to present a keynote speech? How do you network effectively with children interrupting? There are sometimes opportunities for researchers to access scholarships to help fund the extra costs associated with bringing family along, and very occasionally some innovative conferences have offered childcare as part of the registration fee (see pic). However, these types of support tend to be the exception rather than the rule, available to only a few lucky researchers.

Who is missing out on this?
It’s not uncommon for the costs of attending an international conference to exceed AU$3000. This sort of money is often not manageable for early career researchers who do not have travel budgets, or researchers who live in low-to-middle income countries. And while there is undoubtedly a career impact from not attending conferences while your colleagues are, it is really challenging to quantify this. Ursula describes this as similar to the phenomenon of Friday-night drinks in the corporate world: how do we know exactly what chance meeting we may or may not have missed out on by not crossing paths with a particular professor at a conference and having the opportunity to discuss potential collaborations?
 
“The sky does, in fact, not fall in when we stream a conference session over Zoom”
 
We have had good videoconferencing abilities for over a decade, but it has taken a global pandemic and closed borders to move conferences online. Conferences held recently, like the 2020 Victorian Cancer Survivorship Conference and the American Association for Cancer Research Annual Meeting 2020,  successfully welcomed virtual attendees from across the world just as the COVID-19 lockdown was becoming very real in Australia.
 
 Can the COVID-19 pandemic be the catalyst for change and a move towards gender equity?
Is it possible that the unexpected silver lining to this pandemic is that we are able to close the gap for women in STEMM? While we are all looking forward to face-to-face conversations and gatherings again, we are hopeful that the lessons we have all learned from working and networking remotely will lay the foundations for greater diversity in academia into the future.
 
 
To read the full article written by Dr Ursula Sansom-Daly and Associate Prof Caroline Ford, visit this link https://oncologynews.com.au/could-the-covid-19-lockdown-solve-one-of-the-persistent-barriers-to-gender-equity-in-research/

Childhood cancer can have enormous physical and psychological impacts on families. The financial toll of childhood cancer can also be significant. During treatment, families face out-of-pocket expenses which can contribute to their ‘financial toxicity’, meaning the financial burden related to a cancer diagnosis and treatment. Out-of-pocket expenses may include petrol and road tolls for travel to and from the hospital, parking at the hospital, food while away from home, and childcare for the siblings. The other thing which affects families’ financial toxicity is that parents commonly reduce their working hours after their child is diagnosed with cancer, which may mean their household income is also reduced.

Our study
Previous evidence suggests that financial toxicity and employment interruptions may continue even after a child successfully completes cancer treatment. Also, experiences with financial toxicity may vary according to different familial factors (e.g. having pre-existing savings).
We wanted to examine the longer-term financial toxicity and employment interruptions among parents of children who completed cancer treatment. We also examined how parents’ experiences differed for parents living across different socioeconomic status (SES) areas.

Our findings
We interviewed 56 Australian parents (50 mothers and 6 fathers) of childhood cancer survivors about their experiences with financial toxicity and interruptions to their employment. On average, children had successfully completed cancer treatment two years prior to the study (time since treatment completion ranged from 6 months to 10 years).
Two groups of parents were particularly vulnerable to ongoing, unwanted financial or employment impacts: 1) families living in low SES areas reported ongoing financial toxicity after childhood cancer; 2) mothers, particularly those who were on, or recently returned from, maternity leave when their child was diagnosed with cancer, experienced ongoing employment impacts.
 
        SES and financial toxicity
Presumably for families living in low SES areas, the income loss associated with reduced working hours, coupled with out-of-pocket costs, were exacerbated by their lack of pre-existing savings and assets. While financial support from families, communities, non-profit organisations and government helped, these payments did not prevent or entirely relieve financial toxicity for these families.
“When we got home we had to buy a wheelchair, we had to buy crutches…It’s put a massive financial burden, and still does… We’ve been home for, what, sixteen months, so there’s still a lot of money to spend on side effects of her treatment.” (Mother of a childhood cancer survivor)
Family SES should be taken into account when assessing and determining the financial toxicity associated with childhood cancer.
 
        Mothers and employment
Mothers who were on maternity leave when their child was diagnosed and those who recently returned to employment after maternity leave reported that they wanted to work but were unable to find suitable employment after treatment completion. A large issue for these mothers was that potential employers thought they had been out of work for too long. The other issue, was that mothers needed employment that would allow flexible working hours and arrangements to work from home in order to attend medical appointments and attend to their child’s other medical needs.
 
“It was probably two years by the time [my son]…could go to day care and not be sick all the time and me go back to work…Basically being out of the [profession] too long apparently and/or too senior…So it’s been incredibly frustrating trying to get work.” (Mother of a childhood cancer survivor)
 
The way forward
Even families in a high-income country with universal healthcare can experience detrimental financial and employment impacts of childhood cancer several years after treatment completion.
Clinical staff could more consistently assess families’ financial toxicity and refer to financial counsellors to assist with financial decision-making. This referral could occur during treatment completion as a potential preventative measure.
Flexible workplace agreements appear important for parents of children with cancer, and may be particularly important for mothers returning to work after their child’s treatment completion. Cancer-related disruptions are likely to continue for years after treatment completion. Organisations should therefore offer flexibility to parents where possible (e.g. working from home and time in lieu).
These measures are essential to ensure we avoid long-term financial and employment inequalities between families with and without childhood cancer.
 
This blog post was written by Dr Lauren Kelada. The original manuscript has been published in Pediatric Blood & Cancer at: https://onlinelibrary.wiley.com/doi/abs/10.1002/pbc.28345

The long-term impact of cancer: The impact of treatment for childhood cancer is felt well beyond cure. Survival rates for childhood cancer have significantly improved over recent decades. However, there is growing evidence of treatment-related health conditions that compromise the quality of life and health of childhood cancer survivors. These may include second cancers, organ dysfunction, cognitive and psychosocial difficulties, developmental delays, and in some cases late mortality.
 
Managing health after cancer: Survivorship care services are available for survivors to effectively manage these long-term health problems. Research shows that survivors who are engaged in long-term follow-up care have better physical and psychosocial outcomes in childhood cancer survivors. Yet many survivors don’t receive follow-up care leading to missed opportunities for surveillance and early intervention, including screening and healthy lifestyle education). Poor engagement in follow-up care indicates that current models of survivorship care need improvement.
 
New models of survivorship care: The success of any model of survivorship care requires aligning with key stakeholders’ needs and preferences, including survivors and healthcare professionals. In our recent survey study, we aimed to learn about survivors’ engagement in survivorship care, barriers to accessing follow-up care, their satisfaction with care, and preferences for receiving future care. To achieve this, we surveyed 633 participants in total; including 187 parents of young survivors, 251 adolescent and young adult survivors (AYAs) and 195 older survivors from 11 hospitals across Australia and New Zealand. Of these survey participants, 151 also completed an optional telephone interview to help us learn more in-depth about their experiences and preferences.
 
Satisfaction with care: Worryingly, up to 70% of long-term survivors were not engaged in follow-up care. Engagement in follow-up care was significantly lower in older survivors of childhood cancer, yet the number of cancer-related health conditions they reported were much higher. Survivors who reported receiving follow-up care were more satisfied with their care than those not receiving cancer-related care.

Barriers to survivorship care: Survivors reported many barriers to accessing survivorship care, most commonly i) 67% had a poor understanding about the need for, or availability of, follow-up care, ii) 65% experienced logistical barriers such as not having appointment reminders, and iii) 57% reported that the costs associated with attending follow-up clinic prevented them from going, including the cost of travel or taking time off work. Another important barrier was the emotional challenge of returning to the hospital where they, or their child, was treated as it brought back painful memories for them. Further analysis showed that survivors reported a great number of total barriers to accessing care if they were older, a longer time from diagnosis, and lived further away major cities. This suggests that older and more geographically isolated patients need more support to access survivorship care.
 
Preferences for future care: even though survivors reported many difficulties to accessing survivorship clinics, most preferred to receive specialised follow-up care delivered through oncologists, survivorship nurses and multi-disciplinary teams. Fewer survivors preferred their survivorship care to be delivered through community based follow-up, specifically general practitioner’s (GP). Survivors seemed to have low confidence in their GP’s ability to offer survivorship care, possibly due to their GP’s lack of involvement during their cancer treatment, and the strong connection many establish with primary treating oncology team. This represents a key challenge for healthcare systems, as survivorship clinics are under resourced to manage the growing population of long-term survivors of childhood cancer.
 
Importance of these findings: Our findings offer insight into how best we can deliver survivorship care, to cater to survivors’ and parents’ preferences and to ensure that the survivorship needs of this vulnerable population are adequately met. Given that many high-risk survivors are disengaged from cancer-related care, identifying patient preferences can be used to re-engage survivors who should be receiving cancer-related follow-up. Future research should evaluate healthcare professional preferences to ensure system- and physician-reported barriers are also considered in developing an optimal model of care for survivors of childhood cancer. Aligning survivors’, physicians’, and system needs will remain a challenge in developing a preferred and yet sustainable model of care.
 
This blog post was written by Dr Christina Signorelli and Mr Joe Alchin. The original manuscript has been published in BMJ Supportive & Palliative Care Journal at: https://spcare.bmj.com/content/early/2019/11/11/bmjspcare-2019-002001