Researchers from the Cancer Symptom Trials go where others do not. In the process, they change the lives of people living with cancer for the better.

Sometimes, research needs to be done by universities because it's important for the public good – and because nobody else will do it.

Cancer Symptom Trials was established in 2017 to address the unmet symptom management needs of Australians living with cancer.

The program is building a comprehensive portfolio of clinical trials that will accelerate the improvement of cancer symptom management and quality of life for all people living with cancer.

"CST clinical trials often address research questions not supported by pharmaceutical industry but of utmost importance to people with cancer," says CST chair, Professor Meera Agar.

"We do trials of drugs and interventions, led by academics and clinicians."

Off-label prescribing

Health headshot Meera Agar circle

Meera Agar

Some of our trials evaluate "off-label prescribing", where a medication is registered for use but for another population, formulation, or purpose – the role is to understand whether these interventions can be 're-purposed' for a broader application.

Palliative care is an area where many drugs are used off label.

This is combined with a reluctance by the pharmaceutical industry to fund trials, because palliative care – by its nature – is about managing symptoms, and not about finding a cure.

"Any drugs that have come off patent carry little commercial gain, so there is no incentive for pharmaceutical companies to do these trials," Professor Agar says.

We are one of the only groups looking to alleviate the symptoms, which people affected by cancer can sometimes experience for many years from diagnosis until remission or the end their life.

Driving change

Cancer Symptom Trials (CST) is a multidisciplinary research collaborative with more than 200 members working in research and health care organisations across Australia and worldwide.

They have expertise in clinical trial design, symptom interventions and supportive care, with a consumer advisory panel who help in prioritising research and ensuring that the studies are well-designed.

CST members are the driving force behind new study ideas and help identify key gaps and clinical challenges for which clinical trials will be needed in the future.

CST has a broad focus, inclusive of health interventions, training approaches as well as the evaluation of drug treatments.

The two critical research focus areas are:

  • Find better ways to manage symptoms that occur as a result of a cancer diagnosis or its treatments.
  • Improve the quality of life of people with cancer and their carers through prevention, early identification, assessment and treatment of symptoms.

The group is co-located with the Palliative Care Clinical Studies Collaborative, which started at Flinders University in 2006 and moved to UTS in 2017.

What works …

  • Kapanol is an opioid that has been available for more than 20 years in Australia for reducing pain.
  • Thanks to UTS research it became the world’s first approved treatment for chronic breathlessness.
  • People late in any life-limiting illness often start to lose muscle strength including the muscles that assist us to breathe comfortably. Feeling breathless is therefore a common symptom.
  • Kapanol is now routinely prescribed to alleviate this symptom.

… and what doesn't

  • One in 10 people will experience delirium when taken to, or while in hospital care.
  • The eight-year study was the world-first trial of people with delirium in hospice and palliative care where delirium can be the hardest to treat.
  • They compared the antipsychotic medicines risperidone and haloperidol with a placebo, whilst optimising care through orientation, sleep, hydration and mobility.
  • The study found these commonly used medications led to worse symptoms.
  • The study instead recommended early diagnosis and non-medication based care.

Staying objective

"The most important thing is that before we undertake the trial, we don't know which treatment option is best," says Professor Agar.

"Sometimes, our trials support our hypothesis and the new treatment is found to be effective, and this provides a strong argument to put forward for both registration and subsidy for this indication."

Other times, the trials find that the study intervention has no benefit or worse, or even causes harms.

"Our trial exploring antipsychotics for delirium is a good example of this," Professor Agar said.

While we recommended further research to find effective drug treatments, what we found was that the most effective treatments were about support.

"This could be regularly checking that patient hearing aids and glasses are worn, ensuring they are orientated to their environment, maintain hydration and optimal nutrition, and have regular sleeping patterns."

It's been a difficult year because most clinical trials in hospitals have paused and redirected to responding to the COVID-19 pandemic.

"Importantly, the needs of people with cancer continue, and CST has half a dozen trials waiting to reopen and hope to continue this important work from early next year," says Professor Agar.

  • Key symptoms for research

    • Appetite and cachexia (chronic weight loss)
    • Breathlessness
    • Fatigue
    • Pain
    • Nausea
    • Sleep
    • Cognitive and neurological disorders
    • Gut dysfunction
  • Health nurse with pen and clipboard
  • Health headshot Meera Agar circle
    Professor Meera Agar
    Director of Centre for Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT)

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Acknowledgement of Country

UTS acknowledges the Gadigal people of the Eora Nation, the Boorooberongal people of the Dharug Nation, the Bidiagal people and the Gamaygal people, upon whose ancestral lands our university stands. We would also like to pay respect to the Elders both past and present, acknowledging them as the traditional custodians of knowledge for these lands.