Improving care for people with renal disease managed without dialysis.

Background

The number of frail, older and increasingly dependent patients with advanced chronic kidney disease has risen alongside an awareness that renal replacement therapies may be of little benefit to this group. Renal replacement therapy such as haemodialysis is demanding, requiring patients to attend hospital three times a week in order to undergo four hours of dialysis. Patients may feel very unwell following treatment and importantly dialysis may not improve survival and impacts considerably on quality of life (NHS Kidney Care and the NHS National End of Life Care Programme 2009). Some patients will opt not to embark on dialysis accepting instead an alternative treatment known as conservative kidney management where a palliative care approach is adopted and supportive care provided by the multidisciplinary team often in liaison with the community team and GP. The experience of deciding not to dialyse to treat advanced chronic kidney disease and the subsequent impact on quality of life over time warrants investigation as does the effects on carers and the associated costs of this palliative approach. A need was identified to describe the experiences of quality of life and resource use in those receiving conservative kidney management. The aim was to study the patients’ trajectory over 12 months and also the experiences of carers and to measure and describe health and social care costs to patients and carers. In order to carry out this work a research proposal had to be developed. An application was made to the Florence Nightingale Foundation to apply for funding to finance three modules in epidemiology at The London School of Hygiene and Tropical Medicine which would help inform the research proposal. It was felt that the modules offered by The London School of Hygiene and Tropical Medicine would be useful to me as a nurse and researcher who wanted to improve outcomes for people with renal disease,  as epidemiology is a key discipline for understanding and improving global health. I received the epidemiological training by distance learning. By completing the modules I hoped for a comprehensive understanding of the basic concepts and methods in epidemiology together with advanced skills in specific applications of epidemiological research methods.

The Epidemiology modules

Three modules were completed including Fundamentals of Epidemiology, an introduction to the basic ideas and methods of epidemiology; Practical epidemiology which included a step-by-step guide to the practical stages involved in the planning and conduct of an epidemiological study and Writing and Reviewing Epidemiological Papers which aimed to provide basic skills for writing epidemiological research papers and searching and evaluating the scientific literature. The modules were completed over a 9 month period. As I was completing the modules I was applying for a large research grant from the National Institute of Health Research. I have no doubt that the interview panel looked favourably on the fact that I was completing modules at the School of Hygiene and Tropical Medicine to increase my knowledge of epidemiology and that the knowledge I gained through the module informed my application. The proposal was written during 2012 and the application to the NIHR was made in January 2013. I had a successful interview in July 2013 and was awarded a Post Doctoral Fellowship worth approximately £500.000 to undertake the research. I am presently in the process of applying for ethical and Governance support for the study.

The research study successfully funded by the NIHR

This study, across seven UK sites, is designed to capture patient and carer profiles when conservative kidney management is implemented and understand trajectories of care-receiving and care-giving. It will explore the interactions that lead to clinical care decisions and the impact of these decisions on informal carers with the intention of improving clinical outcomes for patients and the care giver experience. An economic analysis of conservative kidney management will facilitate greater transparency of resource allocation processes for persons with chronic kidney disease.

Conclusions

Conservative kidney management is a treatment option offered to patients who do not commence dialysis and includes ongoing medical input and support from a multidisciplinary team (Da Silva Gane et al 2011). It involves collaboration with health professionals in primary care settings particularly as the patient’s health deteriorates and they require specialist palliative care at home. The total number of patients opting for this approach remains unknown but is likely to be increasing as the numbers of frail patients with advanced chronic kidney disease presenting to renal services rises. There is limited evidence concerning quality of life, decision making, resource use, costs and impact on carers in this population. To facilitate improved patient decision making, accurate information on expected quality of life is needed. Staff also require an understanding of the potential impact a decision not to dialyse may have on the quality of life of carers; resource use and costs and issues that influence decision making from a patient/carer and health care practitioner perspective. This is important as renal services are developed nationally to support those receiving conservative kidney management and will help to inform clinicians internationally beginning to explore this population recognising the dearth of research in this area.

In completing the Research Scholarship my career has developed in ways that I might otherwise have not considered. I believe that the funding offered to me strengthened my position when I applied for the National Institute of Health Research grant. I am also now in an improved position to consider how I might usefully use my research and epidemiological skills to enhance outcomes for patients with advanced chronic kidney disease.  I now have confidence that the skills and knowledge acquired on the epidemiology modules are developed and transferable.

I look forward to my continued journey now that the scholarship period has come to an end and will actively promote the Florence Nightingale Foundation scholarships with others, in the knowledge that they offer great opportunities personally and for the patients and carers we help and support.