Chronic Illness and Palliative Care
The Chronic Illness and Palliative Care research theme engages patients, families, and clinicians in cutting edge research to improve the health and wellbeing of those affected by chronic illness and those receiving palliative care.
Our interdisciplinary team delivers ambitious and impactful research through tackling some of the world’s greatest challenges: from using Artificial Intelligence to provide 24hour personalised support for patients with heart failure; to reinventing advance care planning to support patients and carers living with dementia and those affected by end-stage kidney disease.
We specialise in co-design and ensuring patients, families and services users are central to the development of supports, services and treatments. We develop effective solutions which can be integrated into routine care for example social prescribing for those affected by suicide, online platforms for those affected by cancer and exercise as a prescription to manage chronic illness.
Meaningful patient and public involvement (PPI) in research co-design – to optimise client centered innovation across the research process.
Design and evaluation of complex healthcare interventions – to provide the evidence base to improve health related outcomes.
Together we achieve transformative research by:
- Fostering interdisciplinary integration
- Embracing innovation through digital technologies
- Promoting knowledge exchange with our regional, national, and international partners
EXAMPLE RESEARCH PROJECTS
Gillian Prue is the PI of a programme of work examining the impact of exercise in cancer. She is currently the NI lead for the global Movember funded study on exercise and survival in advanced prostate cancer.
INTERVAL-MCRPC is a global study involving researchers in countries across 3 continents and is a large scale multi-centre trial designed to test the effects of high intensity exercise on prostate cancer progression and treatment side effects. She is also running a parallel study to INTERVAL (EXACT-MCRPC) which offers the benefits of participating in a multicomponent physical activity programme to those men with mCRPC who are ineligible for the INTERVAL programme i.e. high intensity exercise. A third trial, PRECISE, is focused on the feasibility of exercising during chemotherapy for pancreatic cancer. This trial is the first of its kind to be delivered in the UK.
Informing the Development of a Psychosocial Intervention.
Patients with end-stage kidney disease managed conservatively, often become very dependent on their carers, including family and close friends.
In this research, funded by Marie Curie we will explore the experiences and needs of these carers across Northern Ireland and London to gain insight into their everyday caring role. Findings will be shared with renal healthcare staff and carers at national workshops in order to guide the development of a helpful intervention to support carers in their role.
The my Support study is an international team of healthcare researchers and clinicians from six countries, working together to support healthcare staff to have end-of-life care discussions with family carers of people living with advanced dementia.
The study implements an educational resource called the Family Carer Decision Support (FCDS) intervention in nursing homes, using the Comfort Care Booklet to guide conversations around end-of-life. The study aims to reduce family carer decision-making uncertainty and to improve satisfaction with fundamental choices related to their relative’s comfort and care.
Research Expertise of Chronic Illness and Palliative Care Staff:
- Using both qualitative, quantitative, and participatory methodologies to promote an understanding of the impact of chronic illness, including those with palliative care needs , from the perspectives of patients, carers, and health care professionals.
- To explore, test and implement feasible solutions to improve care and support for those with chronic illness, including those with palliative care needs, and their carers.
Research led by Professor Joanne Reid on cancer cachexia has informed evidence based guidelines, developed to translate current best evidence into recommendations for multi-disciplinary teams responsible for the identification and treatment of reversible elements of cachexia and improvement in quality of life for both patients who have cancer cachexia and their carers.
Cancer Cachexia: Developing Evidence Based Guidelines
Research led by Professor Joanne Reid on cancer cachexia has informed evidence based guidelines, developed to translate current best evidence into recommendations for multi-disciplinary teams responsible for the identification and treatment of reversible elements of cachexia and improvement in quality of life for both patients who have cancer cachexia and their carers. Guidelines include;
1. Royal College of Nursing (RCN)
2. European Society for Clinical Nutrition and Metabolism (ESPEN). ESPEN guidelines on nutrition in cancer patients.
3. British Columbia (B.C.) Centre for Palliative Care Inter-professional palliative symptom management guidelines.
4. American Society of Clinical Oncology (ASCO) guideline for cachexia in advanced cancer. (DOI: 10.1200/JCO.20.00611 Journal of Clinical Oncology).
Professor Reid’s work in cachexia also extends to renal cachexia, where she has led multi-disciplinary local and international studies, example publications:
McKeaveney, C., Slee, A., Davenport, A., Adamson, G., Farrington, K., Fouque, D., Kalantar-Zadeh, K., Mallett, J., Maxwell, P., Mullan, R., Noble, H., O'Donoghue, D., Porter, S., Seres, D. S., Shields, J., Witham, M., & Reid, J. (2020). Using a generic definition of cachexia in patients with kidney disease receiving haemodialysis: a longitudinal (pilot) study. Nephrology Dialysis Transplantation. https://doi.org/10.1093/ndt/gfaa174
McKeaveney, C., Noble, H., de Barbieri, I., Strini, V., Maxwell, A. P., & Reid, J. (2019). Awareness, Understanding and Treatment Practices when Managing Cachexia in End-Stage Kidney Disease. Journal of Renal Care. https://doi.org/10.1111/jorc.12301
Research by Dr Olinda Santin has transformed supportive cancer care for patients and families in Northern Ireland. This research was instrumental in the launch of a 1.3 million-pound project ‘Transforming cancer follow up’ for Northern Ireland (NI).
The evidence led to the implementation of a new model of cancer patient follow up, termed ‘A recovery package’, which included a holistic assessment, a treatment summary record, an individualised pathway and rapid entry back into the system.
This model improved experience for over 10,000 patients by improving self management and reduced anxiety, travel time to appointments, need for dual speciality appointments and reduction in surgical review waiting times. This research also led to the co-design of an online support system www.cancercaringcoping.com that was integrated into services across NI providing support to 10,000 families per year and which has been adapted to support families affected by cancer in Australia and Vietnam.
The Passion-HF (PAtient Self-care uSing eHealth In chrONic Heart Failure) project, led by Dr Loreena Hill, co-designs and feasibility tests an e-health product to support, educate and empower patients living with heart failure. Funded by European Interreg NWE, heart failure researchers and clinical experts, patients and caregivers from Belfast, Netherlands, Ireland and Germany, have informed the development of an IT platform.
Incorporating guideline-driven software and Artificial Intelligence the e-health product will be personalized, meeting the needs of the patient 24hours per day, 7 days/week. Through engagement with the e-health product, patients will be educated, upskilled and empowered to self-manage their heart failure condition. Ultimately this research has the potential to reduce the frequency of consultations with GP, cardiologist or heart failure nurses, as well as unnecessary and avoidable hospitalisations.