Research symptom nodes
To achieve our goal of better symptom management and improved quality of life for people with life-limiting illness or cancer diagnosis, we focus our research on eight symptoms under the direction of eight Symptom Node Subcommittees (SNSCs).
To express your interest in joining an SNSC related to an interest in palliative care, email firstname.lastname@example.org, or if you are interested in cancer symptom management and supportive care, email email@example.com.
If accepted, you will be required to become a member of PaCCSC or CST, or both. Membership information, including eligibility criteria is available on the PaCCSC membership page and the CST membership page.
Expert members may be co-opted or invited to join and SNSCs are encourage to extend their reach by inviting new members with expertise in a variety of areas, including consumers.
Appetite and cachexia
Cancer cachexia is a syndrome characterised by progressive weight loss, loss of appetite, skeletal muscle wasting and reduced adipose tissues. A loss of appetite can occur as a result of the illness and/or treatment. Quality of life is severely impacted, leading to a poor prognosis. Currently, this is a seriously unmet need with no long term treatments available.
The Appetite and cachexia SNSC is undertaking a comprehensive program of work including systematic reviews, survey studies, phase I and II trials as well as facilitating Rapid program series.
Dr Tina Naumovksi is a researcher in the fields of pharmaceutical sciences and pharmacology, with expertise in complementary medicines. She is one of very few researchers in the world with a multidisciplinary approach spanning the cultivation and preparation, analytical (isolating and identifying compounds), pharmacological (mechanism of action, drug interactions, pharmacokinetics) and clinical research of plant material.
Currently, Dr Naumovski provides organisational leadership as the program coordinator/associate investigator of clinical trials using medicinal cannabis for anorexia in advanced cancer. She is the inaugural Chair of the Appetite and Cachexia Symptom Node Subcommittee tasked with mapping a program of work to improve anorexia cachexia syndrome, thus making her research career truly original and translational. She is based at the School of Medicine, University of New South Wales, is a sessional lecturer/adjunct at Western Sydney University and is an honorary IMPACCT fellow.
The Chair of the Breathlessness Symptom Node Subcommittee is Dr Peter Allcroft.
Cognitive and neurological disorders
Interested in finding out more? To express your interest in joining the Cognitive and Neurological Disorders SNSC, email firstname.lastname@example.org (palliative interest) or email@example.com (cancer symptom interest).
Professor Meera Agar is a palliative medicine physician with particular interests in delirium and supportive care needs of people with brain tumours and geriatric oncology. Professor Agar leads a clinical research portfolio at UTS, including clinical trials and health services evaluation in cancer and palliative care. She led a world-first clinical trial of anti-psychotics in delirium and is leading New South Wales Government-funded clinical trials of medicinal cannabis for anorexia in people with advanced cancer. A Fellow of the Royal Australian College of Physicians, Fellow of the Australasian Chapter of Palliative Medicine, and a clinician scientist, she holds a Masters in Palliative of Care. Her doctorate was awarded in the area of delirium in advanced illness.
Fatigue is one of the most common symptoms encountered by palliative care patients, affecting more than 80% or patients, and is the most associated with moderate/severe distress. It is defined as the subjective feeling or tiredness, weakness or lack of energy and can affect people physically, emotionally and cognitively. It affects those with cancer and non-cancer diagnoses. It is frequently under-recognised, significantly impacting on a patient's quality of life, independence and dignity.
The Fatigue SNSC aims to improve our understanding of fatigue in the palliative care population - both the impact is has on patients and carers, and how best we should be managing it. Our program of work includes a prospective analysis of PCOC data, qualitative studies for both patients' experiences and healthcare professionals' management strategies, the use of education tools, multi-disciplinary randomised controlled trails and Rapid program series.
Fatigue study - honours student opportunity
Are you a student looking for an honours project in palliative care? We are looking for an student who is interested in collaborating in an exciting new research project.
The project will be a qualitative study, interviewing patients and carers to investigate how fatigue affects them during their illnesses and what kind of treatments they may be able to tolerate or be willing to accept. The chosen student will gain an understanding of project protocols, ethics applications and patient interviewing skills.
Find out more on the IMPACCT honours opportunities page.
Dr Gemma Ingham is a Palliative Medicine Specialist at Prince of Wales Hospital, Sydney. As an early career researcher, her area of interest include fatigue and anorexia cachexia management. She is currently coordinating and/or involved in multiple research projects, including a prospective review of PCOC fatigue data, a review of the psychometric properties of cancer-related fatigue measures, and a randomised controlled trial of a multi-disciplinary, goal-orientated intervention for the management of fatigue. She also holds a conjoint lecturer position at UNSW.
Abnormalities of normal gastrointestinal (or gut) function at all levels of of the gastrointestinal tract leading to a myriad of symptoms. While poorly defined, it is likely that the symptoms experienced by people reflect the level of abnormality. This may result in symptoms such as weight loss, dental deterioration, salivary excess, dysphagia, gastroparesis, decreased bowel movement frequency, and anorectal dysfunction.
The Gut Dysfunction SNSC's program of work includes secondary data analysis, population data analysis, questionnaire and qualitative studies to try to understand people's experiences, Rapid program series and more recently, randomised controlled studies.
The Gut Dysfunction SNSC would be delighted to hear from anyone who is interested in joining them in their work to enhance the evidence base about how best to approach the distressing problem of impaired gut function. To find out how to get involved, email firstname.lastname@example.org (palliative interest) or email@example.com (cancer symptom interest).
Professor Katherine Clark is the Clinical Director of Palliative Care Northern Sydney Cancer and Palliative Care Network. In this role, she has made significant enhancements to palliative and end-of-life care, including attracting new funding and reorganising existing services. Professor Clark is a strong clinical leader with a good track record as a palliative care teacher and researcher. She is actively engaged with other lead palliative care researchers in Australia as a leader and a participant in projects.
Professor Clark has served as a PaCCSC Advisory Board member and was a foundation member of the IMPACCT group at UTS. She was the chief investigator for one the largest investigator-driven studies of disturbed bowel function in palliative care patients. She has participated in several studies investigating interventions for the palliation of breathlessness.
Professor Clark led the systematic review for a study investigating octreotide versus placebo in the palliation of inoperable bowel obstructions at the end of life. She holds conjoint professorial appointments at The University of Sydney (USyd), University of Technology Sydney (UTS) and the University of Wollongong (UOW).
Nausea is an unpleasant sensation in the area of the abdomen, often associated with the feeling of an urge to vomit. It is a common and disabling symptom that can be related to an underlying illness, medications or disease-related treatments.
The Nausea SNSC program of work includes systematic reviews and pilot studies as a well as data analysis and facilitation of Rapid program series.
Associate Professor Phillip Good is the Director of Palliative Care at St Vincent's Private Hospital, Brisbane Senior Specialist in Palliative Care at Mater Health Services and Associate Professor at the Mater Research Institute, The University of Queensland. Having trained in Queensland, New South Wales and Victoria, he spent seven years working in Newcastle, NSW before returning to Brisbane in 2010.
In 2012, Associate Professor Good completed a PhD on evidence-based palliative care and is involved in both quantitative and qualitative research studies. His research interests include nausea management, medicinal cannabis in palliative care, activity monitors to monitor pain outcomes, gastrografin for bowel obstruction and qualitative studies about patient and carer journeys in palliative care as well as the experience of Culturally and Linguistically Diverse (CALD) patients, carers and interpreters. He works across a variety of settings including inpatient care, outpatients, consultation liaison and visiting patients in the community.
Pain is an unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage (International Association for the Study of Pain, 2020). It is experienced by approximately two-thirds of patients with advanced cancer, and also affects many patients experiencing non-malignant terminal illnesses. It may be caused by the disease or its complications, treatments or comorbidities.
Effective pain management relies on thorough clinical assessment and includes pharmacological, non-pharmacological, spiritual and psychological aspects, leading to improved quality of life for patients and their carers. Further research in this area is needed to ensure that all patients receive appropriate pain assessment and effective management while minimising adverse effects.
Reference: Raja, Srinivasa N.; Carr, Daniel B.; Cohen, Milton; Finnerup, Nanna B.; Flor, Hertaf; Gibson, Stephen; Keefe, Francis J.; Mogil, Jeffrey S.; Ringkamp, Matthias; Sluka, Kathleen A.; Song, Xue-Jun; Stevens, Bonnie; Sullivan, Mark D.; Tutelman, Perri R.; Ushida, Takahiro; Vader, Kyle. The revised International Association for the Study of Pain definition of pain, PAIN: May 23, 2020 - Volume Articles in Press - Issue - doi: 10.1097/j.pain.0000000000001939
The Pain SNSC works collaboratively to support a range of research initiatives and to facilitate active research idea development. Currently this symptom node encompasses Rapid program series for NSAIDS and methadone conversion, in addition to systematic reviews on cancer pain and its treatment.
Phase II and III studies for the assessment and management of cancer pain are in development, including LICpain (continuous sub-cutaneous lidocaine infusions), the role of virtual reality in pain management and the DEPART Pain study (duloxetine versus pregabalin for neuropathic cancer pain).
Our goal is to progress research that will reduce symptom burden and improve quality of life for people with life limiting illnesses.
The Pain Node welcomes membership applications and new concept ideas from health professionals and researchers from Australia and New Zealand with an interest in pain research in palliative care.
Dr Carly Kiani is an advanced trainee in palliative medicine in Perth, Western Australia, having relocated from Adelaide in 2019. Her interests include neuropathic cancer pain, medical education and the equitable provision of health care. She is currently exploring how best to balance family life with clinical work, training, research and education.
Dr Andrew Webster has a special interest in occupational sleep medicine, including insomnia and fatigue management and circadian rhythm disorders. He is currently the Co-Chair of the Occupational Health, Safety and Performance Council of the Australasian Sleep Association.
Andrew's other are of interest is sleep disorders associated with psychiatric disorders. He is currently the Co-chair of the Neurosciences Council of the ASA. He is also experienced in the management of all aspects of general respiratory medicine.
Andrew completed the Fellowship in Sleep Medicine at Sir Charles Gairdner Hospital, after which he worked as a Consultant Sleep Physician at SCGH. He has been the Respiratory and Sleep Physician for the Aboriginal Health Service in Perth. He practices in clinical located in West Perth, St John of God Hospital as well as Sir Charles Gairdner Hospital. He also conducts regional telehealth clinics.
Andrew graduate from the University of Glasgow and did his advanced training in respiratory and sleep medicine in Sydney a the Royal Prince Alfred Hospital and St Vincent's Hospital, including advanced lung diseases and transplantation. He obtained his FRACP in 2006 and subsequently obtained a research grant and spent three years a research fellow.
Each symptom node is overseen by a group of dedicated clinicians and researchers who lead research and clinical trials that build our knowledge about the best medications and treatments for people affected by these symptoms.
Symptom node subcommittees (SNSC) are approved by the Trials Management Committee (TMC). SNSCs have oversight of all individual clinical research studies undertaken about the symptom. The SNSC and TMC form part of both the Palliative Care Clinical Studies Collaborative PaCCSC governance and Cancer Symptom Trials (CST) governance.
Terms of reference
The SNSC terms of reference set out the objectives and work program for each symptom node as well as member expectations and reporting requirements.
Members of PaCCSC and CST are eligible for membership of any SNSC by self-nomination. Experts may be co-opted or invited to join and SNSCs are encouraged to extend their reach by inviting new members with expertise in a variety of areas, including consumers.