On behalf of the Medical Advisors to the Northern Ireland Kidney Research Fund it is my pleasure to highlight recent clinical and research activity in Northern Ireland.
Clinical Renal Services in Northern Ireland
Transplantation: Fortunately, Northern Ireland has a high quality renal transplant programme which has been further developed to ensure we have the expertise and capacity to undertake all types of kidney transplant procedure. We need to make strenuous efforts to maintain this vital service for patients with end-stage renal disease and provide the highest standards of care possible.
In recent years, the transplant programme has been transformed by expansion in the number of living kidney donor transplants performed. Over 50 living kidney donor transplant operations are now carried out each year. In addition, some of the transplant procedures are now very complex. For example, a kidney transplanted from a donor to a recipient, with an incompatible blood group, would previously have resulted in rapid loss of the transplanted kidney. It is now possible, with very careful management, to successfully carry out an ABO blood group incompatible kidney transplant procedure. This special type of transplant procedure has been successfully performed in Northern Ireland.
In 2014, 98 patients from Northern Ireland received a kidney transplant. In this year (2015), 55 persons have already received a kidney transplant by mid-June. The sustained increase in the Northern Ireland kidney transplant rate has meant a welcome reduction in the waiting time for transplantation for many of our patients. There are still 184 persons in Northern Ireland on the waiting list today. Nevertheless, the overall number of patients waiting has decreased substantially because more transplants are being performed locally.
The transplant team has been fully supported by the Belfast HSC Trust and Department of Health. This team consists of surgeons, anaesthetists and nephrologists working with nursing and laboratory colleagues. The work of scientific staff in the Histocompatibility and Immunogenetics (Tissue Typing) Laboratory is particularly important for the safety and success of transplantation.
Our new transplant and renal failure surgeons, Mr Tim Brown, Mr James McDaid and Miss Hannah Magowan, have integrated with our existing surgeons, Mr John Connolly, Mr Mohie Omar and Mr Peter Veitch (part-time locum). The consultant surgical team is now at full strength and pushing the boundaries of what is possible.
As I reported last year, Northern Ireland continues to have the highest rate (per million population) of live donor kidney transplant operations in the UK. We have the best results at 1 year post transplant (in terms of the level of kidney function provided by the transplant).
It is an exciting new era of transplantation in Northern Ireland. Within the very near future we will have reached the milestone of 2000 kidney transplant procedures – a remarkable achievement for our local programme.
Number of dialysis patients in Northern Ireland: Over the last 25 years the total number of persons requiring chronic dialysis treatments has steadily increased. This reflects an increasing demand from an aging population with multiple medical problems such as diabetes and hypertension. This expansion in the need for dialysis required careful planning to ensure dialysis capacity was available and has resulted in development of renal units in Tyrone County Hospital, Antrim Hospital, Daisy Hill Hospital, Ulster Hospital and Altnagelvin Hospital as well as further expansion at Belfast City Hospital. Over the previous three years, the numbers of patients receiving chronic dialysis decreased slightly. This was primarily because of the excellent results from the transplant programme with some patients actually receiving their kidney transplant before they needed to start dialysis. This year, however, the number of persons having chronic dialysis is starting to rise again.
In June 2015, there are 746 persons being treated with chronic dialysis. Presently, 640 patients are receiving hospital-based haemodialysis, a further 27 individuals have independent home haemodialysis and 79 persons perform home-based peritoneal dialysis. The large number of hospital-based chronic haemodialysis patients continues to put pressure on some of the individual renal units which are unable to accommodate all of their local haemodialysis patients. This has been particularly challenging for the unit at Antrim which is still working at or beyond its capacity. Unfortunately this still means that some patients have longer journey times to receive treatment at other renal units e.g. to Belfast City Hospital or Ulster Hospital Dundonald.
The novel self-care dialysis unit opened in late 2013 at the Knockbreda Centre, near Forestside in Belfast, and has proved very popular with some individuals. This unit provides more flexible timing of dialysis treatments for those patients who are willing to undertake “self-care” i.e. they will operate the dialysis machine. In addition, this unit is training persons for home haemodialysis and is already providing a more “patient-centred” approach to dialysis support in the community.
We are fortunate, compared to many other parts of the UK, in having a relatively low percentage of patients presenting late and as an emergency with end-stage kidney failure. We think this is because of widespread education on chronic kidney disease and very good links with General Practitioners who refer patients early for assessment. Of note, we also have the oldest average age of patients on dialysis in the UK which certainly confirms that there is no rationing of these treatments in Northern Ireland.
Vascular access for haemodialysis: This remains a very important issue for patients on chronic haemodialysis. A vascular access device is needed to allow the patient’s blood to be dialysed. Ideally this should be a surgically created arteriovenous fistula (an operation to connect an artery and vein in the arm) to ensure reliable access to the circulation with the lowest future risk of bloodstream infection. In Northern Ireland we are trying to reach the target of having more than 60% of persons on dialysis using a fistula. We are now getting close to achieving this target. Dr Jennifer Hanko, has led many improvements in how patients are managed in a vascular access pathway. The additional surgeons appointed are working to increase the percentage of patients using a fistula and they have also introduced some new innovative surgical procedures. The NIKRF is now supporting crucial research into vascular access.
Chronic kidney disease: Every person who develops end-stage kidney disease (needing chronic dialysis or a kidney transplant) will have progressed through the various stages of chronic kidney disease. Chronic kidney disease (CKD) is common and increasing (again reflecting an aging population with multiple other health problems). Approximately 5% of the adult population have kidney function that is less than 50% of normal. Earlier detection of CKD is now possible by simple changes to the routine reporting of commonly performed blood tests, improved education of health care professionals including the publication of clinical guidelines, and increased awareness amongst General Practitioners.
Northern Ireland nephrologists developed local guidelines for the management of chronic kidney disease in conjunction with patient groups including the Northern Ireland Kidney Patients’ Association and NIKRF. These are published by the Guidelines and Audit Implementation Network (GAIN) and Regulation & Quality Improvement Authority (RQIA) www.gain-ni.org andhttp://www.gain-ni.org/Library/Guidelines/index.asp. We have recently revised our CKD guidelines and it will be published on the GAIN website within the next few weeks. The NIKRF continues to support a whole portfolio of research projects focused on chronic kidney disease.
Acute Kidney Injury: This is still a very important problem as acute kidney injury (AKI) is common, costly and associated with prolonged stays in hospital. Persons with the most severe form of AKI have a high mortality. It has been estimated that up to 25% of hospitalised patients develop some degree of acute kidney injury and it is therefore important that this is recognised and changes to practice are made to reduce the impact of AKI. Nephrologists in Northern Ireland have been very active in working to improve AKI outcomes. In 2009, the National Confidential Enquiry into Perioperative Deaths (NCEPOD) published a report highlighting that AKI was often recognised at a late stage and some steps could have been taken to reduce the risk of it occurring. We responded to this NCEPOD AKI report by developing guidelines for use by medical staff in hospitals and general practice in Northern Ireland. These were published in 2010 by GAIN (www.gain-ni.org and http://www.gain-ni.org/Library/Guidelines/index.asp). We revised these guidelines and GAIN re-issued them in 2014 (http://www.gain-ni.org/images/GAIN_-_AKI_-_Northern_Ireland_Guidelines_for_Acute_Kidney_Injury_PDF.PDF). We also continue to deliver educational seminars on AKI to every junior doctor in Northern Ireland during their 2nd year of training and all medical students are taught about AKI and their knowledge assessed in exams. An electronic alert for AKI has been introduced throughout Northern Ireland to trigger clinical teams to take important steps to reduce the harm from AKI. These initiatives build on local research into AKI that was supported by the NIKRF. Dr Emma Borthwick was a NIKRF clinical research fellow and since her appointments as a consultant Emma has worked energetically to improve recognition of AKI in hospital and ensuring optimal care is provided for persons with this condition.
Dr Chris Hill (previous NIKRF clinical fellow 2012-14) took up his consultant nephrologist post in September 2014 at the Belfast City Hospital with special interest in renal transplantation.
Reorganisation of clinical services in Belfast:
As I have previously outlined, the A&E department at the Belfast City Hospital was closed almost 3 years ago. Patients with acute medical problems are initially assessed in the Emergency Department at the Royal Victoria Hospital (RVH). If the patient is known to nephrologists and their problem is primarily related to dialysis or renal transplantation they are then usually transferred directly to level 11, Belfast City Hospital. If the patient is known to nephrologists but their problem is unrelated to their kidney condition e.g. stroke or hip fracture then they will be admitted to the RVH. A clinical team of a consultant nephrologist, renal registrar and many renal nurses now provide daily care of RVH inpatients. A very busy 3-station haemodialysis unit is operating 7 days a week in the RVH to support dialysis patients admitted for surgery or with medical emergencies.
In summary, the local clinical teams are working hard to deliver high quality care to persons with kidney disease throughout Northern Ireland.
Research activity supported by NIKRF
Research is the engine of creativity and innovation that creates new evidence and opportunities for changing clinical practice. With NIKRF support, a number of excellent research projects are underway and we aim to ensure that these studies have longer term impacts on the quality of patient care.
There are many areas of renal medicine practice that require better evidence to improve outcomes for patients. The NIKRF is supporting a broad range of excellent renal research projects. These include
· Diabetic kidney disease (the commonest cause of end-stage kidney failure)
· Factors influencing the long term success of renal transplantation
· Risks for heart disease in persons on dialysis and following renal transplantation
· Better ways to manage chronic kidney disease in the community
I would like to highlight the work of some of the individual staff you have supported over the past year.
In 2014-2015 the NIKRF provided support to three young researchers. They are Dr Jennifer McCaughan, Miss Katherine Benson and Dr Agnes Masengu.
Jennifer McCaughan (2012-15) is a clinical academic trainee who is supported by the NIKRF and an externally funded research training fellowship. Jennifer has been studying factors that contribute to the long term success of kidney transplantation. Jennifer has just published an interesting study in the American Journal of Transplantation describing the special characteristics of persons who have had a functioning kidney transplant for more than 20 years (http://www.ncbi.nlm.nih.gov/pubmed/25683898). During her research, Jennifer focused on a new area of research called “epigenetics” which provides links between inherited variation in DNA (the genome) and environment (or “nature versus nurture”). Jennifer has recruited several hundred renal transplant patients from Northern Ireland to discover if epigenetic changes to their DNA over time are important hallmarks of the long term success of transplantation. She has discovered the genetic basis for New-Onset Diabetes After Transplantation (NODAT) with a major publication in the “Journal of American Society of Nephrology” - 2014 (http://www.ncbi.nlm.nih.gov/pubmed/24309190). Jennifer also made a significant contribution to a study of skin cancer risk following transplantation. This work was undertaken jointly between researchers in Northern Ireland and the Republic of Ireland and was published in the journal “Transplantation” in September 2014 (http://www.ncbi.nlm.nih.gov/pubmed/24798309). Jennifer has just successfully defended her PhD thesis earlier this week at the viva exam and will graduate later this year.
Katherine Benson (2013-16) is a science graduate who is completing her second year as a PhD student in the Nephrology Research Laboratory based at the Belfast City Hospital. Katie has been exploring the important role of genetic and epigenetic risk factors in causing end-stage renal disease (ESRD) and the role of vitamin D in diabetes following transplantation. Katie has become an accomplished scientist mastering complex laboratory methods for epigenetic profiling and DNA sequencing. She hopes to present some of her work at the American Society of Nephrology meeting in San Diego later this year. We are optimistic that her research will yield new information to explain why some individuals have such a high risk of severe kidney failure.
Dr Agnes Masengu (2014-16) is a clinical trainee supported by an NIKRF research fellowship (2014-2016). Agnes is studying the very practical issue of vascular access for haemodialysis. Unfortunately for many persons who have an arteriovenous fistula procedure the outcomes are poor i.e. the surgical operation was not successful or the fistula did not mature afterwards. This “failure” of vascular access creation is costly in terms of resources and unpleasant for patients. Agnes is trying to discover what factors are really important when creating a fistula to help streamline the pathway for patients and to reduce unnecessary procedures. Agnes is making very good progress with a series of linked projects and already has some of her work published.
The nephrology research staff at Queens University includes Dr Amy Jayne McKnight, Dr Gareth McKay and Professor Peter Maxwell. We are ably supported by a very capable research laboratory manager, Ms Jill Kilner. There have been 13 students in the nephrology research group over the last year. The Nephrology Research Laboratory at the Belfast City Hospital, funded jointly by the NIKRF and Renal Unit Fund, continues to be a very busy hub of research activity. Students have presented papers at the annual meetings of European Society of Human Genetics, American Society of Nephrology, Renal Association; British Transplantation Society and Irish Society for Human Genetics.
Future research plans
We have a really dynamic research group which is linked with the clinical teams. In June 2015, we have 9 research students in the nephrology research group. The NIKRF will continue to support Dr Agnes Masengu and Miss Katie Benson with their research during 2015-2016.
We are very keen to continue building on our success and have a number of plans for new staff.
- Dr Jennifer McCaughan will be embarking on several years of rigorous training in Histocompatibility and Immunogenetics (H&I) supported by scientists in NHS Scotland H&I laboratories in Edinburgh and Glasgow. Jennifer’s training will be generously supported by the NIKRF. The skills that Jennifer will learn are essential for the long term viability of the renal transplant programme in Northern Ireland
- Mr Clark Mills is a new PhD student starting in our group in September. Clark will be working on very large genetic and epigenetic databases to try and integrate these to find new risk factors for kidney disease. Clark will mainly be funded by the Department of Education and Learning (DEL)
- Miss Jennan Zhang is another new PhD student starting work in September. Jennan will be following up patients attending diabetes and cardiovascular disease clinics looking for new markers for chronic kidney disease. Jennan will be mainly funded by the China Scholarship Council (CSC).
- An application has been made to the NIKRF for a post-doctoral research fellowship which will allow us to recruit a talented doctoral student to help speed up the pace of the laboratory based genetic and epigenetic research.
The Medical Advisers are pleased to highlight to the NIKRF that in 2014 and 2015 (to date) there have been more than 40 kidney research papers published in peer-reviewed scientific journals by staff that you have supported. This is the highest total number of papers published during the period covered by a Medical Advisors annual report. You can see this evidence by using PubMed (http://www.ncbi.nlm.nih.gov/pubmed) and searching under the names of the research staff you support. Alternatively, when you are at an NIKRF meeting on level 11, Belfast City Hospital, you can look at the noticeboard outside the seminar room where this work is displayed. This research output is really remarkable and it reflects the energy and creativity of the scientists and clinicians you support. The NIKRF continues to be acknowledged as a primary source of funding in these publications. The papers have local, national and international impacts. Arguably even more important is that the training provided to these young scientists and doctors helps in their future careers as scientists and medical staff working for kidney patients.
The Medical Advisers are always immensely grateful for the excellent work done by NIKRF in supporting research into kidney diseases and highlighting the importance of organ donation and kidney transplantation.
I would like to thank everyone within the NIKRF, on behalf of the researchers and clinical teams, for your superb support of both the renal services and kidney research.
Professor Peter Maxwell MD PhD FRCP
on behalf of the Medical Advisers to the NIKRF
(Dr Aisling Courtney MPhil FRCP & Mr James McDaid PhD FRCS),24 June