Adolescents and young adults (AYAs) aged 15-39 with cancer face developmental, psychological, and medical-related challenges. When cancer treatment is not successful and cure becomes unlikely, they can be especially at risk. There is little guidance to define and support best-practice communication with AYAs towards end-of-life.
We conducted a narrative review to address this research gap. Overall, we found that evidence points to the importance of introducing palliative care teams earlier. Additionally, it is important to explore AYAs’ preferences around end-of-life issues in a repeated, consistent manner; this offers multiple ‘openings’ to these difficult conversations, and also allows for the fact that AYAs’ preferences can and do change over time as their medical and support needs change. Our review also highlighted that AYAs may have strong preferences on a range of issues such as being able to stay in their own home, being comfortable and free from pain, and expressing their wishes to loved ones.
We highlighted a number of best-practice recommendations to guide clinicians around the critical elements of when, who, what, and how end-of-life conversations may be best had with AYAs. These included:

1. When: Introduce palliative care team members earlier during treatment to facilitate opening conversations to end-of-life concepts prior to disease/symptom-related ‘crises’ or the end of active (curative) treatment.

By introducing palliative care teams earlier, AYAs and their families have time to develop relationships with these new health-professionals prior to formal changes in care.

1. Who: Ensure the wider multidisciplinary team is confident and adequately skilled to support end-of-life conversations with AYAs.

Given that AYAs can develop relationships with various different team members involved in their care, it is important that all team members – whether it is the doctor, social worker, radiation therapist, or ward nurse – feel comfortable to talk to AYAs in age-appropriate ways if and when the young person is ready to talk about end-of-life issues. Taking this team approach is also consistent with a developmentally-appropriate AYA model of care.

1. What: Tailor the content of end-of-life conversations to the individual patient, and the unique context of the particular time point the conversation is being introduced.

There are many important topics to broad with AYAs who may die from their disease, such as preferences for pain/symptom control, ongoing active/palliative treatment, and potential place of dying/death. These topics can include thoughts and preferences about which family and friends a young person would like to have visit/close, and when (e.g., do they want visitors when they are sad or feeling unwell?); or what activities they really value and make them happy in their day-to-day lives (are there ways we can continue to make these possible as their disease progresses?). Opening conversations focused more on the identity of the AYA patients sitting in front of you (who are you, and what’s important to you?) can be a useful way to set up some of the more difficult/confronting conversations later on.

1. How: Use structured advance-care planning tools to scaffold conversations, and as a mechanism to facilitate communication between AYA patients, their families, and members of the multidisciplinary care team.

Communication tools such as the American Voicing my ChoicesTM may be useful in supporting discussion around different topics at different times. These tools can also be useful in ‘externalising’ the discussion in some ways – clinicians can refer to the fact that the tool was developed together with other young people, so the patient sitting in front of you may or may not find the topics helpful. Studies are underway, including here in Australia, to tailor this American tool to be culturally- and linguistically-appropriate to different countries.
 
Numerous gaps in the evidence base remain. For example, there is a lack of data to guide practice when disagreement between AYAs’ and their parents’ preferences exists. However, based on our research synthesis, we proposed a new model (below) to support clinicians and researchers to better understand how individual, familial, and socio-cultural factors impact end-of-life communication with AYAs in clinical settings. We hope this model will continue to spark new research questions and support clinical advocacy for AYAs with cancer and their families facing end-of-life.
Figure 1: Model of the developmental context for end-of-life communication with AYA cancer patients.
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Just one exercise physiology consultation is enough to improve motivation and exercise levels among most child cancer survivors, a UNSW Sydney study has found.

Almost three quarters of child cancer survivors increased their general exercise after just one consultation with an exercise physiologist, a UNSW Sydney study has found. The sessions were also motivational, with 9 out of 10 kids reporting they wanted to increase their fitness levels.

“Currently, less than one-third of survivors are achieving recommended exercise guidelines, but they are ten times more likely to develop cardiovascular disease than the general population,” says Dr David Mizrahi, lead author of the study and Clinical Research Officer at UNSW Medicine’s Prince of Wales Clinical School. 
Published this week in Heart and Mind, the study assessed the response of child cancer survivors and their parents to a fitness consultation from an exercise physiologist. The research involved 102 cancer survivors aged between 8 and 18 years old, with 70 families of these survivors surveyed on their satisfaction with the consultation.

96% of parents and survivors found the consultation an acceptable part of oncology care and would recommend it to other survivors. While some were eager for a consultation during cancer treatment, 4 out of 5 would prefer the consultation after treatment or in a follow-up session. 
Parents were also twice as happy with the exercise information provided when compared to routine treatment.

In each consultation, the exercise physiologist assessed the child’s cardiorespiratory fitness and body composition before creating a personalised exercise plan. Together, they set short and long term fitness goals and discussed ways to safely increase the child’s exercise abilities to their needs and preferences. 
“The kids found the individualised lifestyle support really important and helpful in their recovery,” says Dr Mizrahi.

Survivors are already at a higher risk of developing health conditions later in life, such as cardiovascular disease and diabetes – regular exercise could help minimise this risk, while also providing other physical and psychological benefits.

“Individualised and tailored guidance from an exercise professional will help mitigate the risk of developing future health problems,” says Dr Mizrahi.

Exercise and survivorship

Despite the well-known benefits of exercise to physical and psychological health, fitness consultations are not currently part of standard oncology care in Australia. 

Post cancer treatment, patients will usually have a consultation with their doctor about survivorship. This conversation may include exercise guidelines, but it really depends on the doctor, explains Dr Mizrahi.
“The doctor won’t be trained specifically in exercise science, and they have so many other things to worry about. They might mention exercise in general terms, but not exactly what and how much the patient should be doing.”

In some cases, the lack of information surrounding exercise after cancer can lead parents to be hesitant of their child moving back into higher-intensity sport – which is why Dr Mizrahi thinks it’s crucial to keep parents informed and assured that the exercise plan is tailored to their child’s needs.
“Childhood cancer is often called a family disease as well, because it doesn't just affect the child – it affects everyone around them.

“When the child is young, they will need support and encouragement from the parents to be active. It can even be something they do together, like going to the park.
“If we can make a child active, they are more likely to be an active adolescent, and in turn an active adult.”
Regular exercise isn’t just something to help the children with their physical health, but also their mental health.

“Children didn’t do anything to get cancer, but they have to live with the consequences of it for their whole lives – like being at high-risk for developing other health issues later in life.
 
“Exercise is something that’s in their control, and they can also get enjoyment out of.”

An opportunity for change 

Dr Mizrahi hopes the findings will help build the case for government to fund exercise physiology programs in oncology departments across Australia. He sees this move as not only the right thing to do, but the smart thing. 

“We have this evidence that parents and kids want this to happen – they enjoy this type of service – but it's not standard of care. Why is that the case in Australia?

“When kids are more active after cancer treatment, they may be less likely to develop chronic diseases later in life. In terms of cost-benefit ratio, the government will save a lot of money in the long run by providing hospitals with exercise physiologists.”

The use of exercise in cancer treatment is already common in some American hospitals, and Dr Mizrahi hopes to make this a reality in Australia. 

Next year, he will be travelling to St. Jude's Children's Research Hospital in Tennessee, a leading institution in paediatric oncology and exercise research, as part of his Australian-American Fulbright Postdoctoral Scholarship.

“St. Jude’s has all sorts of interventions during and after treatment, including technology such as fitness trackers and mobile apps.

“I have a lot to learn and bring back to try and improve the health outcomes for Australian cancer survivors,” says Dr Mizrahi.

This article was originally published on UNSW newsroom
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