Lessons from Australia in palliative care trials for people with disabling breathlessness
Published: 17 Aug 2016
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 Miriam Johnson, Professor of Palliative Medicine at Hull York Medical School.
Miriam 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.
Miriam 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” – Miriam Johnson
At St Catherine’s Hospice in Scarborough, Miriam’s own clinical palliative care unit, her 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 Miriam’s recommendations regarding the importance of research nurse support.
Miriam 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.
Read Miriam’s report here.
Notes to Editors
Contact: Chloe Roach, Hull York Medical School Media Enquiries - 01482 464 416 / 01482 463 327
The Royal College of Physicians of Edinburgh (RCPE) is an independent standard-setting body and professional membership organisation. The College’s aim is to improve and maintain the quality of patient care. RCPE helps qualified doctors to pursue their careers in specialist (internal) medicine through medical examinations, education and training. It also provides resources and information to support and facilitate professional development for physicians throughout their careers. The College will be joint funding a Medical Practice & Education Travelling Fellowship in 2017.
Hull York Medical School (HYMS) is a partnership between the Universities of Hull and York. HYMS, currently ranked in the NSS UK top ten for student satisfaction, aims to increase the number of doctors and make a difference to local health services. Since opening in 2003, HYMS has become known as one of the UK’s most welcoming and inclusive medical schools with a reputation for innovative, inspiring, exciting and rigorous medical education. HYMS’s research is organised into centres which each conduct world-class research. Much of this is interdisciplinary, spanning traditional subject boundaries and reaching out into other departments within the Universities of Hull and York.