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A Deakin biostatistician is working with US researchers on a clinical trial to improve the quality of life of children with advanced cancer.
Caring for children with advanced cancer and other complex, life-threatening diseases is distressing for everyone involved, but a US-based trial is hoping to ease the situation for seriously ill children and their parents.
Funded by the US National Institutes of Health (NIH), “The Paediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) Response Randomised Controlled Trial” proposes an intervention that couples electronic patient reported outcomes with palliative care.
The trial is the next stage of an ongoing research project to develop interventions aimed at improving quality of life for children with advanced cancer and their families.
Co-investigator on the project, Deakin University’s Associate Professor of Biostatistics Liliana Orellana, said the “PediQUEST Response” is one of the first trials to evaluate the effect of an early and symptom-focused palliative care intervention for children with advanced cancer.
The study will compare two groups of children attending four large US paediatric oncology centres. One group will receive the intervention and the other standard oncological care.
“Research in adults shows that early integration of palliative care can not only improve the patient’s quality of life, but also that the patient can survive longer,” Associate Professor Orellana said.
She explained that while recommendations call for early palliative care integration for seriously ill children to ease suffering, very few randomised controlled trials have evaluated whether palliative care improves child and family outcomes.
“Children and teens with advanced cancer endure a high degree of suffering, but their distress – regardless of the evolution of the disease – can be relieved,” Associate Professor Orellana said.
“However, our formative work shows that symptom distress is currently not systematically elicited; that families and oncologists tend to ‘normalise’ distress and accept it as inevitable; that symptoms are mostly treated with pharmacological strategies; and that palliative care is rarely consulted early.”
The study uses a computerised survey tool devised by the project’s Principal Investigator, Dr Joanne Wolfe from Boston’s Dana Farber Cancer Institute and Harvard University, called PediQUEST that collects patient-reported outcomes and generates feedback reports.
The tool questions the child and the parents about how the child has been feeling emotionally and physically, and about other areas of life such as school and friendships. When a child in the intervention group reports moderate to high distress from any symptom, an email is automatically sent to the parents, the primary providers and the palliative care team, alerting them of the child’s distress.
“The palliative care nurse then contacts the family as soon as possible to see what can be done to alleviate the situation, whether that’s altering pain medications or trying a wider approach such as meditation, counselling or alternative therapies,” Associate Professor Orellana said.
“This intervention combines two highly innovative strategies aimed at improving the care of children with cancer. We will target family activation through child-reported outcomes combined with early palliative care integration to improve symptom management.
“If the study is successful, the results will greatly inform future research and clinical strategies aimed at easing suffering in children with cancer and other serious illnesses that can be applied in countries outside of the US.”
According to Associate Professor Orellana, one of the strengths of the study is asking the children themselves to report on their symptoms and quality of life.
“Usually, the oncologist will talk to the parents about how the child is feeling, and this reduces the opportunities to find out mild symptoms that might be bothering the child and causing them distress,” she explained.
“In addition, what the parent sees is often different to what the child reports. What we’re discovering is that when the children have the opportunity to report their own symptoms and feelings, they will report symptoms which are not necessarily found on their medical records.”
Associate Professor Orellana was invited to join the research team in 2012 as the senior biostatistician. She has a longstanding collaboration with Dr Wolfe and Co-Chief Investigator Dr Veronica Dussel, a paediatrician and academic with Harvard University and the Institute of Clinical Effectiveness in Buenos Aires, Argentina.
Associate Professor Orellana has been involved in all stages of the design of the NIH funded trial, including the two-year pilot study. She is responsible for the analysis plan, will provide guidance in biostatistical matters, supervise database design, and participate in the Safety Monitoring Committee for the study.
For all media enquiries please contact Deakin’s media team.
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Biostatistician Associate Professor Liliana Orellana is Co-Investigator on a US-based clinical trial aiming to improve the quality of life of children with advanced cancer.