Engaging childhood brain cancer survivors

Over 90% of childhood brain cancer survivors develop life threatening and disabling health conditions after they finish cancer treatment. Engage is a consumer co-designed telehealth trial that helps these survivors manage their health and improve their quality of life.

Date published:
General public

Childhood brain cancer has life-long effects

Professor Claire Wakefield is the Director of the Behavioural Science Unit at the Kids Cancer Centre at Sydney Children’s Hospital. Claire leads the Engage trial with Medical Director Professor Richard Cohn.

‘People often believe that if you survive cancer treatment you can go back to your normal life. But for most childhood brain cancer survivors, that is not the case,’ Claire says.

‘When a child has a brain cancer, the cancer can affect brain functions such as attention, memory and cognitive function. Cancer treatments they receive such as radiation and chemotherapy can affect every body system.

‘Survivors can develop obesity or mobility problems, suffer vision or hearing loss or have fertility issues. But more than half of childhood brain cancer survivors do not have survivorship care. After the age of 18, they face many barriers to finding the services they need.’

Consumer co-design

Claire’s team co-designed Engage with cancer survivors and their families, such as Heather Boreham and her mum Carole. It is 31 years since Heather had brain cancer treatment. Mum Carole still helps Heather manage the effects of her disease.

‘Heather was diagnosed with brain cancer 2 days after her 6th birthday,’ Carole says. ‘She has done very well. She is 37 now and she has a job as a learning support assistant in a primary school. But she has serious health issues caused by her brain cancer treatment.

Consumers need survivor support

‘After Heather transitioned from paediatric care to adult care, we found the adult specialists didn’t always understand the needs of childhood cancer survivors. I had to explain to them what care Heather needed.

‘That’s why it's so important to keep a connection open with the medical people who treated her. They can't treat her anymore of course, but they have knowledge to share. They can direct us where we need to go.’

Nurse-led telehealth delivery

Nurse Karen Johnston leads the Engage program delivery. Engage is a telehealth program, which makes it easy for all survivors to access. ‘We contact survivors to check where they’re at. If it is clinically appropriate, we offer them Engage and if they participate in the program, we do a telehealth assessment,’ Karen explains.

‘Our multidisciplinary team uses the assessment to create a health care plan. This is an action plan to help the survivor and their GP navigate their future health,’ Karen says.

Survivors are struggling

56 childhood brain cancer survivors have entered the Engage trial so far. ‘We’ve found they are struggling with difficulties with their physical and mental health,' Claire says.

‘Most haven't had any specialist care for the late effects of their brain cancer for a long time. Sometimes they didn't realize their difficulties were due to their cancer or their cancer treatment. They were just battling on.

'Each patient that's come through has a different collection of difficulties and that highlights the fact that it needs to be an individualized program because there's not a one size fits all.’

Improving survivors’ confidence to manage their healthcare

The team aims to help survivors believe they can reach their health care goals. ‘If we can improve survivors’ confidence to manage their own care and their knowledge about what they need, that will make a world of difference,’ Claire says.

‘The other component is improving their engagement with the health system. If they start going to the GP regularly, and the GP gives them valuable screening and checks, they're more likely to keep up with that.’

Survivor health education

Karen is learning that survivors need information about their childhood cancer treatment. ‘They don’t always know the medical details,’ she says. ‘This history is important because it affects their long-term care.’

‘If they’ve had radiotherapy but their GP doesn’t know about this, they might be under treated for thyroid function. This can affect their mood and wellbeing. If they can be prescribed hormones, they should start feeling a bit more sprightly.’

‘We've certainly helped some people,’ Karen emphasises. ‘There's been physical benefits to participants from us pointing them in the right direction of services that they should be having.’

National roll-out for the Engage program

‘The feedback from people in the program has been really positive,’ Claire says.

Once the trial ends, Claire’s team will analyse the data. She expects the results will show the value of Engage to childhood brain cancer survivors. Claire hopes these results will encourage health care providers to roll out Engage across Australia.

‘With cancer, cure is not enough,’ Karen explains. ‘We want survivors to lead their best lives. If we can identify their health needs and fix them, that can really enhance their experience.

‘With Engage we are seeing real time benefits.’

Engage brain is supported by $1.94 million from the MRFF. The Kids Cancer Centre at Sydney Children’s Hospital also offers Engage to survivors of all kinds of childhood cancer.

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