TOTAL XVII – TOTAL Therapy Study

Paediatric acute lymphoblastic leukaemia (ALL) is the most common childhood cancer. Yet, despite the latest in clinical advances, it still remains the leading cause of cancer related death in young people. 

Thanks to the Good Friday Appeal Run for the Kids, newly diagnosed patients with ALL and lymphoblastic lymphoma at The Royal Children’s Hospital (RCH) have been able to access the latest in personalised medicine.  

The trial, known as the TOTAL Therapy Study XVII or TOTAL 17, is an international collaboration led by St Jude Children’s Research Hospital in America.  

Over the past two years, 61 patients at the RCH have been enrolled in the innovative program, far exceeding the initial aim of enrolling 20 patients per year. Recruitment for the trial ceased in mid-2023, with patients enrolled continuing with follow up including neurocognitive assessments.

Once enrolled, the child’s blood and bone marrow samples were sent to St Jude. There, clinicians used state-of-the-art tools and gene mapping to identify the specific cancer-causing gene combinations, providing patients with the opportunity to receive treatment that is specifically designed to fight their type of cancer.  

As well, the study offers an opportunity to identify the likelihood of cancer impacting patients and their families again in the future, while also providing information about the suitability of different drugs, to minimise side effects.  

Currently, the RCH is the only hospital in Australia participating in the TOTAL Therapy Study XVII, providing access to the best outcomes globally.   

This would not be possible without support of the Good Friday Appeal and Run for the Kids, something Dr Di Hanna, a Paediatric Oncologist at the RCH Children’s Cancer Centre, is grateful for.  

“The Good Friday Appeal fundraising is critical for every piece of the cancer journey. We need the latest research, diagnostic tools, best clinical trials, and patient and family support networks, and the Good Friday Appeal has been a cornerstone for each part of that.  

“Importantly, thanks to the Good Friday Appeal, we are also able to provide children with leukaemia and lymphoma access to one of the best clinical trials in the world,” said Dr Hanna.  

One of the patients enrolled in the trial is five year old Bobby, who was diagnosed with B-cell ALL when he was three.  

For patients like Bobby, the long term impacts of the TOTAL Therapy Study XVII are life changing.  

“One of the best things the trial has offered us is the additional supports, including the neurocognitive and physio assessments. It has been invaluable for us when considering things like getting Bobby ready for school, including any adjustments we need to make,” said Trudy, Bobby’s mum.  

“Additionally, the idea that we could be part of that larger pool of research is significant to us. Being able to contribute to future developments to benefit other families made our decision an easy one,” she added. 

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RCH Health Literacy

Recent findings have shown over half of all Australian adults have low health literacy. There is a need to empower future generations of Australians by developing accessible reputable health information.

The Royal Children’s Hospital (RCH) Health Literacy Project aims to create a range of new, engaging and inclusive digital health resources with and for young people, to elevate the voice of the child. The project will expand on two current health communications initiatives – the RCH National Child Health Poll and RCH Kids Health Info (KHI). 

Through understanding children and young people’s perspectives, this project aims to increase community health literacy, helping to keep them well, and out of hospital.

Thanks to the support of the Good Friday Appeal, the RCH can extend its unrivalled reach as a trusted online source of children’s health information, leading to better outcomes for young people in Australia and beyond.  

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Creating evidence for telehealth-delivered neurodevelopmental assessments

Thanks to the Good Friday Appeal, The Royal Children’s Hospital (RCH) and the Murdoch Children’s Research Institute (MCRI) are coming together to undertake research to provide clinicians with guidance and evidence-based information on how to best deliver telehealth developmental assessments.

Patients accessing healthcare via telehealth appointments have increased following the COVID-19 pandemic.

It is vital children and young people with complex neurodevelopmental needs are given accurate and timely diagnoses and appropriate plans to manage their symptoms. This funding will ensure the quality and accuracy of assessments, so patients receive the best possible care.

For most children, the gift of learning, communicating with others, developing friendships, and engaging in day-to-day activities comes naturally. Yet for many children with a developmental disability, this is not the case.

Effective diagnosis and treatment plans for developmental disabilities traditionally rely on a series of in-person assessments that look at social and communication skills, speech and language abilities, and behaviour and brain function. Clinicians have shifted parts of these assessments to telehealth to treat vulnerable or disadvantaged patients.

Currently, the reliability of telehealth developmental assessments is not known. This makes a study in the area crucial in preventing incorrect diagnoses, unsafe clinical practices, and substandard clinical outcomes.

The Royal Children’s Hospital (RCH) and the Murdoch Children’s Research Institute (MCRI) are working together to develop evidence-based telehealth assessments.

The study will provide clinicians with guidance and guidelines on how to deliver high-quality telehealth assessments. This will result in positive health outcomes across the fields of neuropsychology, clinical psychology, developmental paediatrics and speech pathology.

The outcome of this study will be published in journals, discussed at national and international conferences, and shared in workshops to allow clinicians globally to deliver greater care and provide best practices.

This research can lead to high-quality telehealth-delivered assessments. It can also increase access to accurate assessments for vulnerable patients, such as those with immune deficiency, reduced mobility, mental health and neurodevelopmental problems, and those in regional or rural areas.

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Child Life Therapy in the Emergency Department

Thanks to Woolworths and the Good Friday Appeal, The Royal Children’s Hospital (RCH) will be expanding its Child Life Therapy (CLT) program to the Emergency Department (ED). This will reduce stress for patients, families and staff, and help make visits to the hospital a more positive experience for everyone. 

Through using proven techniques such as play therapy, CLT focuses on the needs of children, ensuring compassionate and individualised trauma-informed care. This can reduce anxiety, and create a space where patients and their families feel supported. The expansion of CLT to the ED will lead to improved patient flow, and a more positive experience for staff and families. 

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Implementing a Vascular Access Specialist Team at the RCH

Thanks to the generosity of the Good Friday Appeal and its supporters, children receiving care at The Royal Children’s Hospital (RCH) will soon have an expert team of specialist nurses providing support with the insertion of peripheral intravenous catheters (PIVCs).   

Eloise Borello, a Clinical Nurse Consultant who specialises in vascular access, said the Vascular Access Specialist Team (VAST) will make an enormous difference in the quality of care patients receive. 

“PIVCs, which are more commonly known as cannulas or drips, are used to deliver lifesaving medications and fluids to our patients,” Eloise said. 

“Many children who present to the RCH often require urgent medical treatment, and the fastest way to administer the medications and fluids they so vitally need is through a PIVC.  

“While PIVCs are common, it can be challenging to insert these devices in children as they have smaller, more fragile veins which are often difficult to see. This becomes even more difficult in critically unwell children. No child likes to have a needle inserted, and young children can become very scared and distressed when they need a cannula.   

“For some of our patients, the trauma of their first PIVC insertion can leave a lasting impact, causing high levels of anxiety and fear. Routine assessments or even simple checks, such as looking at the site, can become distressing triggers for children and young people.  

“We know inserting a cannula is one of the scariest procedures for children in hospital. Children and families have told us that the memories of a bad experience can last many years which can impact care in and out of the hospital. We are committed to reducing pain, anxiety and trauma that can be associated with PIVC insertion.”  

The VAST will work closely with patients, families, and clinical teams to improve this experience, enhance staff education, and create a patient-centred approach to inserting PIVCs. 

“The ultimate goal of the VAST is to create the best experience possible for children and their families,” 

By ensuring a best-practice approach to PIVC insertion, including the use of advanced technology like ultrasound-guided insertion, by a team of highly skilled clinicians who are experts in the field, the RCH will be at the forefront of care for children and families. 

While ultrasound guidance is proven to be the best technique to insert PIVCs, its uptake has not been widespread across most Australian healthcare settings because it takes clinicians months of training and experience to develop the advanced ultrasound skills required.  

The new ultrasound machines, also supported by the Good Friday Appeal and its partners, will be instrumental in allowing clinicians to use ultrasound guidance routinely for PIVC insertion, which is key to the successful outcomes of this treatment.   

“Growing a team of nursing experts skilled in the advanced ultrasound techniques will provide children who need this treatment with the best opportunity of having a successful insertion of the PIVC on the first attempt, drastically improving their experience,” said Eloise.   

Committed to revolutionising paediatric care, the VAST brings together a group of expert clinicians equipped with advanced knowledge and skills in vascular access.  

Recognising the challenges and trauma faced by young patients, the VAST is dedicated to improving expertise, reducing complications, enhancing staff education, and championing a patient-centred approach to PIVC insertion.  

Importantly, the impact of the VAST will reach beyond the four walls of the RCH.   

“Our goal is to create a service that includes a team of expert PIVC inserters and educators who will mentor and train junior doctors and nurses in best practice in PIVC insertion. As these clinicians rotate to different hospitals as part of their training, the skills they have developed will benefit children across Australia,” Eloise said. 

“We will also share our learnings around service design, data and outcomes. This collaboration will expand on the existing relationships the RCH has with our national colleagues and will ensure we cultivate a community of practice where ideas and learnings can be shared, and where implementation of best practice PIVC insertion is spread to all states.   

The introduction of VAST at the RCH will be a turning point for paediatric healthcare in Australia, something that Eloise knows would not be possible without the generosity of the Good Friday Appeal and its supporters.   

“We’re so grateful for the community in making this project possible. For our team, receiving this support represents how our community shares a vision that values improving the hospital experience for sick children across Victoria and Australia.    

“Your generosity allows us to innovate and develop a service which will be an Australian first in paediatric healthcare, and for that I would like to say thank you,” Eloise said.   

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Chronic Illness Peer Support (ChIPS) Program

The Chronic Illness Peer Support (ChIPS) program at The Royal Children’s Hospital (RCH) has been transforming the lives of young people aged 12 to 25 living with chronic illnesses for 30 years.

Thanks to the Good Friday Appeal, ChIPS provides a supportive community for those navigating the complex world of chronic illness. It offers young people the opportunity to connect with each other through organised activities and twice yearly camps. There are currently 135 young people registered with ChIPS and up to 700 young people have participated in the program since 1993.

Reflecting on the ChIPS program’s incredible journey, Harry Lengelsen-Brown, Program Manager of ChIPS shared: “When people from other hospitals across the world hear about the ChIPS program, they say, ‘How have you managed to do that?’.” 

“The program is such a simple idea when you think about it: here’s a bunch of young people supporting each other, let’s put them into a program and see what happens. I wish the supporters of the program could meet some of the young people and hear from them and their families what this has meant for them because it’s genuinely life-changing.” 

The longevity of ChIPS is not just measured in numbers but in the countless stories of resilience, hope and transformation. 

“A particular story that stands out to me is a young person who said she wouldn’t be here if it wasn’t for ChIPS. When she first joined the program, she was in a very dark place. And now, she’s finished her degree and is just killing it,” Harry shared. 

As the ChIPS program continues to go from strength to strength, its future is full of possibilities. 

“Thirty years ago, they said, ‘Let’s listen to the young people and what they want, and we’ll do what we can to make that happen!’. And that’s still what we’re doing now, so as long as we remember that we can’t go wrong,” said Harry. 

“I want to say a massive thank you to all the ChIPS supporters! It’s hard to capture in words what ChIPS means to the young people that have been in the program.” 

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Upgrade of Retcam

Each day some of Victoria’s sickest babies and infants are admitted to the Butterfly Ward at the RCH, the Newborn Intensive Care Unit (NICU), with many teams from across the hospital coming together to provide specialist care. One of the teams caring for these babies is the Ophthalmology Department.

Through Good Friday Appeal support, RCH Ophthalmologists will have access to the latest equipment and technology, with the upgrade of a vital tool used in screening for eye disease in newborns, known as a RETCAM.

Using the RETCAM, clinicians are able to take digital photos of structures inside the eye to screen for paediatric eye conditions. The device will also play a pivotal role in how a patient’s evolving eye disease is managed. For example, for children with retinoblastoma, an eye cancer that develops in the retina, the RETCAM can be indispensable in detecting changes in the retina which can progress from sight-affecting to life threatening. The current system has been in use at the RCH since 2002 with almost 6,000 babies already directly benefiting from this sight-saving technology.

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New Electrosurgical Units

On average, over 13,000 surgeries are undertaken at the RCH every year. Thanks to support from the Good Friday Appeal and 3AW, clinicians across the hospital will have access to the latest equipment through the upgrade of 19 electrosurgical units.

Used in almost every surgery, and across multiple departments, the electrosurgical unit uses a high-frequency electrical current to cauterise blood vessels during surgery. The new devices will contain the latest technology available and will ensure safer, quicker, and more precise surgeries.

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Cardiology Research

Thanks to support from the Good Friday Appeal, researchers at the Murdoch Children’s Research Institute (MCRI) are helping to ensure a brighter future for children with cardiac conditions.

Associate Professor Jonathan Mynard is a bioengineer and cardiovascular researcher at the MCRI, specialising in paediatric hypertension, medical devices, cardiovascular modelling, blood pressure and flow dynamics (haemodynamics), and congenital heart disease. Jonathan’s current research project is looking at the difference in blood pressure measurements between a child’s arms, and the impact this may have on a child’s diagnosis. It is the first study worldwide to determine the size and frequency of inter-arm blood pressure differences in children and adolescents.

Initial findings revealed that even a small difference in blood pressure measurements between one arm and the other could lead to a wrong diagnosis. “Children with high blood pressure, many of whom appear to be healthy, have a greater risk of developing hypertension in adulthood, a major risk factor for cardiovascular disease,” said Jonathan.

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Garden Program Vision: A Breath of Fresh Air

Thanks to support from the Good Friday Appeal, patients and families at The Royal Children’s Hospital (RCH) will have access to a dedicated Garden Program, offering a supportive and interactive space for all. This educational and therapeutic initiative will be led by a multidisciplinary team including child life therapists, garden staff, and volunteers and aims to decrease stress for patients and their families, which helps to improve patient recovery. Beth Dun, Manager, Child Life Therapy at the RCH said that garden programs have great benefits for patients and families.

“The Garden Program will be incredibly beneficial for patients at the RCH. As well as giving them a place to breathe in fresh air, it can also be a welcoming space for children and young people from regional areas, who often find the city very intimidating,” said Beth.

“Gardening itself has many benefits for patients, including offering a safe, natural setting to participate in a non-clinical, fun activity that provides a welcome distraction from their illnesses. The use of familiar garden tasks that are simple and diverse offers patients the chance to feel successful as well as tasks that cater to different levels of capacity or energy.”

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