The ultimate aim of my work is to help improve the quality of life and death for those with end-stage kidney disease.
I worked for many years in the renal speciality having been drawn to the complex collection of dialysis treatments offered to patients with end-stage kidney disease, and wondering how they might impact on their quality of life and that of their carers. I worked as a renal Ward Manager and Matron in London followed by a Senior Clinical Nurse Specialist role where I had the opportunity to set up a new supportive and palliative care service for patients with end-stage kidney disease who had decided not to dialyse, at the Royal London Hospital, Whitechapel. This was followed by a PhD where I followed people up once referred into the service and was able to describe their illness trajectory in relation to symptoms, prognosis, communication and the impact on carers.
I have just completed the PAlliative Care in chronic Kidney diSease (PACKS) study. This study explored quality of life, symptoms, cognition, frailty, performance decision making, costs and impact on carers when patients decide not to embark on dialysis, and was funded by the National Institute of Health Research in the UK. The study provides substantive new information for health and social care planning of conservative management in both the United Kingdom and other countries with a comparable health service structure.
I am presently leading the qualitative arm of the Advance Care Planning with Older Patients Who Have End-stage Kidney Disease (ACREDiT) study. This study is testing the feasibility of carrying out a randomised controlled trial to evaluate advance care planning with older patients who have end-stage kidney disease. In addition, I am co-investigator on a study led by Professor Joanne Reid which is identifying cachexia in an end-stage kidney disease population. I am also principal investigator on the SOLITUDE study which is exploring the benefits of reflexology on sleep in patients receiving unit haemodialysis. In my role as Research Chair for the European Dialysis and Nurses Association (EDTNA), I am leading an international Delphi study exploring challenges and opportunities for renal palliative care.
We held a successful Arts in Health Research Symposium in 2018 with the University of Florida Center for Arts in Medicine, designed to provide a rich dialogue on research and practice in arts in health with a cross-national perspective. Educators, students, artists, researchers, and practitioners joined to share practice, evidence and perspectives, often centred around illness and loss in this dynamic two-day round table event. We also held a public event attended by over 60 service users and healthcare staff from the Northern Ireland Renal Arts Group which I established and Chair with patient William Johnston. The workshop in April 2018, focused on areas of complex decision making in end-stage kidney disease including advance care planning and included break out sessions focussed on decision making in older people deciding between dialysis and conservative management. Recommendations included a clear need to a) improve patient centred decision making; b) involve those effected by kidney disease at all stages of any study c) provide up-to-date information on progression of studies and how they might contribute to informing and improving patient-centred decision making towards the end of life
Dr Helen Noble
Dr Noble (far right) with members of the Northern Ireland Kidney Patient Association and Kidney Care UK at the recent renal workshop.
Dr Noble at QUB, with students from the University of Florida
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