05 August 2016

Lessons from Australia in palliative care trials for people with disabling breathlessness

Over 2.5 million people in the UK suffer from illnesses such as lung and heart diseases, which cause disabling breathlessness, but better research is required to address the lack of palliative treatments, according to a new report by Professor of Palliative Medicine at Hull York Medical School, Miriam Johnson.

Professor Johnson recently returned to the UK having spent four weeks in Australia observing hospices and hospitals that are part of the Palliative Care Clinical Studies Collaborative (PaCCSC), which is the world’s biggest palliative care clinical trials group. Her travels were funded by a Winston Churchill Memorial Trust Travelling Fellowship Award, in partnership with the Royal College of Physicians of Edinburgh.

Breathlessness trials are particularly challenging as they need to be designed to ensure they do not add to the patient’s burden, and there are many examples of abandoned studies as a result of this. However, PaCCSC has developed a series of clinical trials which address clinical problems associated with regularly used medications.

Professor Johnson concluded that in order to have successful trials, organisations must recognise the time and resources required for research. In addition to institutional support, it is crucial that the trial principal investigator works effectively with the research nurse and is engaged in recruiting patients. It is also essential that the trial team responds to referrals quickly, enabling interested patients to participate while they are able.

“Embedding research into clinical practice requires a culture change in many palliative care units and hospices. The patients cared for by palliative care teams are at the most risk of unwanted side-effects from the very medications intended to help them. In order to make sure that patients receive treatments that do good, rather than harm, we must continue to conduct high quality research to identify effective and tolerated treatments” – Professor Miriam Johnson

“Good palliative care is critically important and we’re delighted to have been able to support Miriam to meet world leaders in palliative care trials. We hope that through sharing her findings and implementing them initially through her own palliative care unit, Miriam’s recommendations will go on to benefit people right across the UK” – Julia Weston, Chief Executive of the Winston Churchill Memorial Trust

Professor Johnson’s Fellowship has inspired a fresh vision of how a palliative care unit can be actively engaged in research. At St Catherine’s Hospice in Scarborough, Professor Johnson’s own clinical palliative care unit, the findings are already reinvigorating and building upon ongoing research. The York Trials Unit has begun incorporating regular research nurse group meetings into their clinical trials as a direct response to Professor Johnson’s recommendations regarding the importance of research nurse support.

“I welcome the debate this has generated about how we can further the opportunities available for our patients in the area of research and how we can incorporate research outcomes more consistently into our everyday practice” - Dr Carina Saxby, Medical Director at St Catherine’s Hospice

Professor Johnson presented her findings at a research group seminar at the University of Hull, as part of a review of the recruitment strategies in clinical studies, and they will be shared across Yorkshire and the Humber’s clinical research network's palliative care specialty group. She also recently shared her report with and directly contributed to a Hospice UK ‘research in hospices’ workshop.

The PaCCSC team is using Professor Johnson’s report as an external expert review in their next application for continued core funding from the Australian Department of Health and Ageing.

“The study tour undertaken by Professor Miriam Johnson was a fantastic opportunity to share and discuss key success factors for effective palliative care. This crucial research will help us in identifying better solutions that both countries can share” - David Currow, Professor of Discipline of Palliative and Supportive Service, Flinders University, Australia

In addition to her research, Professor Johnson contributed to the University of Hull’s successful bid for £500,000 from the Wolfson Foundation to develop a world-leading centre for palliative care research. The £2.4million Wolfson Palliative Care Research Centre will form part of the University’s £28million Health Campus, currently under construction.

Read Professor Johnson’s report here.