EDTNA/ERCA European Dialysis and Transplant Nurses Association/European Renal Care Association Riga 2014
Patient-centred Renal Care – A Multidisciplinary Approach to Holistic Health
Journal of Renal Care

EDTNA/ERCA Journal 1.2006

A new Internet Resource for Chronic Kidney Disease Patients

Paula Ormandy1, Hans Vlaminck2, Maurice Harrington3, Mark Forest4 , Ronald Visser5 for the EDTNA/ERCA Research Board

1 Institute for Health and Social Care Research, University of Salford, UK
2 University of Leuven, Belgium
3 Chief Technician, Salford Royal Hospitals NHS trust, UK
4 Technician and Web site designer, Salford Royal Hospitals NHS trust, UK
5 Dianet Dialysis Centres, Amsterdam, the Netherlands

Key words:
Chronic kidney disease
Information
Internet

Abstract
This paper focuses on the development of a portal in the World Wide Web (WWW), which captures and locates quality information for patients with chronic kidney disease (CKD). It examines the problems patients face when accessing and understanding information gleaned from Web sites and describes an idea from a Research Board Member to facilitate patient access to quality information. The idea germinated into the development of a patient specific Web site, providing one stop access and links to appropriate CKD information, assessed by patients and health professionals. Collaboration between the EDTNA/ERCA Research Board and CEAPIR the European Federation of Kidney Patients has enhanced the project.

References

  1. Calderon JL, Zadshir A, Norris K. Structure and content of chronic kidney disease information on the World Wide Web: Barriers to public understanding or a pandemic.
    Nephrology News and Issues 2004; 18 (11): 76-84
  2. Thakurdesai PA, Kole PL, Pareek RP. Evaluation of the quality and contents of diabetes mellitus patient education on Internet.
    Patient Education & Counseling 2004; 53 (3): 309-313
  3. Jaffrey JB, Becker BN. Evaluation of eHealth Web sites for patients with chronic kidney disease.
    American Journal of Kidney Disease 2004; 44 (1): 71-76
  4. Bedell SE, Agrawal A, Petersen LE. A systematic critique of diabetes on the World Wide Web for patients and their physicians.
    International Journal of Medical Information 2004; 73 (9-10): 687-694
  5. Wilson P. How to find the good and avoid the bad and ugly: a short guide to tools for rating quality health information on the Internet.
    BMJ 2002; 324: 598-602
  6. Eysenbach G, Köhler C. How do consumers search for and appraise health information on the World Wide Web? Qualitative study using focus groups, usability tests, and in-depth interviews.
    BMJ 2002; 324: 573-577
  7. Gagliardi A., Jadad A.R. Examination of instruments used to rate quality health information on the Internet: chronicle of a voyage with unclear destination.
    BMJ 2002; 324: 569-573
  8. Da Silva-Gane M, Goovaerts T, Elseviers MM, Lindley EJ. Information and counselling for patients approaching end-stage renal failure in selected centres across Europe.
    EDTNA/ERCA Journal XXVIII (1): 28-55
  9. Rigby M, Forsström J, Roberts R, Wyatt J. Verifying quality and safety in health informatics services.
    BMJ 2001; 323: 552-556
  10. Commission of the European Communities eEurope 2002: Quality Criteria for Health related Web sites
    HON Code of Conduct (HONcode) for medical and health Web sites HON Foundation: URL: http://www.hon.ch/
  11. Ahern T. More on eInformation for CKD patients.
    Nephrology News and Issues 2004; 18 (11): 84
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Comparison of Renal Care Practice in Europe: Centre and Patient Characteristics

Monique Elseviers (1), Jean-Yves De Vos (2), Maurice Harrington (3), Alessandra Zampieron (4), Paula Ormandy (5), Theodora Kafkia (6) for the EDTNA/ERCA Research Board.

(1) University of Antwerp, Belgium, (2) AZ Werken Glorieux, Ronse, Belgium, (EPD project Co-ordinators), (3) Department of Renal Medicine, Salford Royal Hospitals NHS trust, Salford, UK, (4) Padua University Hospital, Italy, (5) Health Care Practice R&D Unit, Salford, UK, (6) 2nd. I.K.A. Hospital, Thessaloniki, Greece.

Summary

The European Practice Database (EPD) contains data from 8 countries including 276 centres and 21,861 dialysis patients. Comparing patients and centre characteristics, remarkable similarities and pronounced differences in renal practice between different European countries and between centres within each country were found.

References

  1. Pancirova J, Kracikova J, Lopot F, De Vos JY, Elseviers MM.
    European Practice Database in the Czech Republic.
    EDTNAERCA Journal 2004; 30 (2): 71-74
  2. Zampieron A, Elseviers MM, De Vos JY, Favaretto A, Geatti S, Harrington M
    The European Practice Database (EPD): results of the study in the North-East of Italy
    EDTNAERCA Journal 2005; 31 (1): 49-54
  3. Kafkia T, Kourakos M, Basiliki L, Eleftheroudi M, Panagiota T, Doula M, Laskari A, Thanasa G, De Vos JY, Elseviers MM
    European Practice Database: Results of Greece
    EDTNA/ERCA Journal 2005; 31 (1): 43-48
  4. Picavet L, Boullé S, De Vos JY, Elseviers MM for the Research Board of EDTNA/ERCA
    European Practice Database in Belgium
    EDTNAERCA Journal 2006; 32 (1): ????
  5. Lindley E, Pancirova J, Kracikova J, Lopot F, Green D, Harrington M, De Vos JY, Elseviers MM.
    Management of renal anaemia: Comparison of practice in the Czech Republic and Northern England.
    EDTNAERCA Journal 2004; 30 (2): 75-83
  6. De Vos JY, Elseviers MM, Harrington M, Zampieron A, Vlaminck H, Ormandy P, Kafkia T for the EDTNA/ERCA Research Board.
    European practice in haemodialysis: results of the EPD.
    EDTNAERCA Journal 2006; 32 (1): ???
  7. John Wright J, Harrington M, Picavet L, De Vos JY, Elseviers MM for the EDTNA/ERCA Research Board.
    Technical aspects of haemodialysis treatment: comparative of Scotland and Belgium.
    EDTNAERCA Journal 2006; 32 (1): ???
  8. De Vos JY, Elseviers MM, Harrington M, Zampieron A, Vlaminck H, Ormandy P, Kafkia T for the EDTNA/ERCA Research Board.
    Infection control practice across Europe: results of the EPD
    EDTNAERCA Journal 2006; 32 (1): ???
  9. Kafkia T, De Vos JY, Elseviers MM, Zampieron A, Ormandy P, Harrington M.
    transplant Practice in Europe: selection of patients.
    EDTNAERCA Journal 2006; 32 (1): ???
  10. Elseviers MM
    Statistics Corner. The box plot: an alternative way to present a distribution of observations
    EDTNAERCA Journal 2004; 30 (2): 114-116
  11. CIA – Central Intelligence Agency. The world fact book.
    www.cia.gov/cia:publications:factbook
  12. Van Dijk PCW, Jager KJ, Stengel B, Gronhagen-Riska C, Feest TG, Briggs JD. Renal replacement therapy for diabetic end-stage renal disease: Data from 10 registries in Europe (1991-2000).
    Kidney International 2005; 67 (4): 1489-1499
  13. Harvey JN
    trends in the prevalence of diabetic nephropathy in type 1 and type 2 diabetes.
    Current Opinion in Nephrology Hypertension 2003; 12 (3): 317-322
  14. Research Board of EDTNA/ERCA
    National EPD booklet of Czech Republic (2003), Italy (2003), England (2004), Greece (2004), Belgium (2004) and Scotland (2004).
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Development of indicators to measure differences European variation of nursing activities

Alessandra Zampieron1, Monique Elseviers2, Paula Ormandy3, Hans Vlaminck4, Jean-Yves de Vos5, Theodora Kafkia6, E. Lindley7, Maurice Harrington8.

  1. Diploma Universitario per infermiere, Padova, Italy
  2. University of Antwerp, Belgium
  3. University of Salford, United Kingdom
  4. University Hospital Leuven, Belgium
  5. Werken Glorieux Dialyseafdeling, Ronse, Belgium
  6. University Hospital, Thessaloniki, Greece
  7. St. James’s University Hospital, Leeds, United Kingdom
  8. Salford Royal Hospitals NHS trust, United Kingdom

Key Words:
Nephrology nurse role
Indicators
Tasks
Activities

Abstract
This paper describes a study to capture the key roles and activities of nephrology nurses across different countries in Europe. The concept of the study and the need to clarify the activities of the nephrology nurse arose as part of a larger study to develop the European Practice Database (EPD)1. The Research Board (EDTNA/ERCA) needed to identify key questions that would detect significant differences in the role and responsibilities of nephrology nurses in different countries and monitor the evolution over time of nephrology nursing practice in Europe. It was therefore appropriate to devise a separate small study to generate evidence based questions for the EPD and confirm the reliability and usefulness of the information captured.

References

  1. Elseviers M, De Vos JY, Pancirova J, Zampieron A, Lindley E, Green D, Harrington M. EDTNA/ERCA Research Board. European Practice Database: comparative results of the year 1 pilot project. EDTNA ERCA Journal 2004; Apr-Jun; 30 (2): 64-70
  2. Royal College of Nursing (RCN) (1993) Role of nephrology nurse: counsellor, teacher, resource person, advocate, leader, technical expert. Available at http://www.rcn.org.uk/ Open: 12/12/2003.
  3. American Nephrology Nurses Association (ANNA). Sub-specialities of nephrology nursing: nephrology, peritoneal dialysis, haemodialysis and transplantation (1995). Available at http://www.annanurse.org/ Open: 12/12/2003.
  4. CANNT. Standards of nursing practice. Available at http://www.cannt.ca/nursing_standards.htm Open: 12/12/2003.
  5. McCann MM. The renal nurse in a nephrology ward setting. Abstract book 32nd EDTNA-ERCA Conference, 20-23 September 2003; pp. 40.
  6. Mc Closkey Dochterman J, Bulecheck GM. Nursing interventions classification (NIC) (Fourth Edition). St. Louis: Mosby, 2004.
  7. Mc Closkey JC, Bulecheck G, & Donahue W. Nursing interventions core to specialty practice. Nursing Outlook 1998; 46: 67-76.
  8. Zampieron A, Elseviers M, De Vos JY, Favaretto A, Geatti S, Harrington M. The European practice database (EPD): results of the study in the North-East of Italy. EDTNA ERCA Journal 2005; 31 (1): 49-54.
  9. Ridley J, Harwood L, Lawrence-Murphy JA, Locking-Cusolito H, Wilson B. How five advanced practice nurses in nephrology spend their time. CANNT Journal 2000; 10 (4): 38-42.
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Editorial Comment

Professor Gert Mayer
Division of Nephrology
Department of Internal Medicine
Medical University Innsbruck
Anichstrasse 35
A – 6020 Innsbruck
Austria

In the late 19th century the famous Sir William Osler wrote “Medicine is a science of uncertainty and an art of probability” and this statement remains true despite all the progress made since then. Medical professionals as well as patients find it hard to accept that definite solutions in medicine are more the exception than the rule, as many decisions have to be made in the absence of completely adequate information. Even at the conclusion of a diagnostic process we almost never can completely exclude or prove the presence of a specific disease. Sometimes, for example in the emergency room, we have to start therapy without a definite diagnosis. Even if a specific diagnosis is extremely likely, we often have various treatment options that can be utilised. Therefore if complete certainty in clinical medicine is unattainable we constantly have to do everything possible to reduce the chance of error and try to reach optimum decisions in the interest of our patients.

The concept of ‘Evidence Based Medicine’ (EBM, but the term evidence based nursing is also present in the literature and follows the same principles) as originally defined by David Sackett and colleagues in Canada provides excellent tools to improve our clinical performance in this respect. Basically EBM asks that the personal experience of the medical professional with best available external evidence from systematic research is used to define the optimum options for an individual patient.

Personal experience certainly is a source of uncertainty and error but nonetheless cannot be replaced by any other means. Research in the field of the so-called ‘cognitive sciences’ (with proponents such as the Nobel laureates Amos Tversky and Daniel Kahneman) tries to dissect out and understand inherent problems of the human mind, which can lead to poor judgements. Their findings show that the so called eminence based (meaning based on expert opinion only) medicine is not the way to proceed.

However, if there is the successful transfer of knowledge and absolute logical reasoning dominates the medical world, the need for solid external evidence still persists as unfortunately common sense alone does not help in many situations and might even be distractive. To clarify this issue I would like to present one example. It was known for quite some time, that patients with heart failure and ventricular arrhythmias had a high risk of sudden cardiac death. In the 1980s drugs became available, which were able to suppress ectopic electric activity and common sense suggested a resulting prevention of sudden cardiac death and thus improvement of the prognosis of affected patients. The drugs were used until a prospective, randomised, controlled study demonstrated the opposite and it was only after this study that severe side effects of antiarrhytmic drugs, such as a reduction in cardiac contractility, were increasingly recognised. Without solid and clean data collection we still would use these agents in the best spirit but nonetheless harm our patients. Collecting data, summarizing and presenting the results as well as critically discussing them is not a process just to satisfy the ego of researchers. It is more the duty of almost everybody involved in patient care and clearly we all should aim to produce excellent external evidence and use it. The best achievable evidence according to the concept of EBM comes out of randomised controlled studies. Unfortunately we do not have these studies available for every question we might ask. So what should we do then? Some people try to tell us that if there is no high level evidence for a specific treatment option we should not use this approach at all. This certainly does not follow the principles of EBM, as this concept asks for the best available (but not the absolute best) evidence to use. If there is no perfect study, we have to look for the next best level of evidence, which should then be incorporated into our clinical work.
Everybody should realize that every piece of information added to the literature is important and therefore anybody, who is collecting data contributes to the progress of medicine and improves patient care. Research in the field of medicine is the duty of everybody and not the holy grail for some extraordinary people.

In this issue of the journal several pieces of evidence are presented, many involving epidemiological or cross sectional data. We might find other external evidence on some of the topics covered, maybe with different conclusions. Nonetheless reading these articles will open our minds, provide the basis for discussions and finally lead to a re-judgement of our daily work.

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European Practice Database in Belgium

Luc Picavet (1) (EPD coordinator Belgium), Sylviane Boullé (2), Jean-Yves De Vos (3), Monique Elseviers (4) for the Research Board of EDTNA/ERCA

(1) Maria Middelares Hospital, Gent, Belgium
(2) University Hospital St Luc, Brussels, Belgium
(3) Werken Glorieux, Ronse, Belgium
(4) University of Antwerp, Belgium

After the successful pilot EPD Project in 2002-2003, we decided to perform the EPD project in four additional countries: Belgium, Greece, Norway and Scotland.

Data collection took place on 31st December 2003 and was finalised in April 2004.

The EPD Project Belgium 2003 – 2004 was extremely successful with a high response rate and good quality data. Within Belgium there are 64 main centres for the treatment of chronic renal failure (29 in Flanders and 35 in Wallonia) and 52 satellite units (36 in Flanders and 16 in Wallonia). Fifty-seven centres, including 5056 patients, decided to participate in this ambitious survey. Participation rate in Belgium was exceptionally high, particularly in Flanders with a participation rate of 97%. The participation rate in Wallonia was also very good at 83%.

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European Practice in Haemodialysis: Results of the EPD

Jean-Yves De Vos (1), Monique Elseviers (2), Maurice Harrington (3), Alessandra Zampieron (4), Hans Vlaminck (5), Paula Ormandy (6), Theodora Kafkia (7) for the EDTNA/ERCA Research Board.

(1) AZ Werken Glorieux, Ronse, Belgium, (2) University of Antwerp, Belgium (EPD project Co-ordinators), (3) Department of Renal Medicine, Salford Royal Hospitals NHS trust, Salford, UK, (4) Padua University Hospital, Italy, (5) University of Leuven, Belgium, (6) Health Care Practice R&D Unit, Salford, UK, (7) 2nd. I.K.A. Hospital, Thessaloniki, Greece.

Summary
The European Practice Database (EPD) project, developed by the EDTNA/ERCA Research Board, collects data on renal practice at centre level in different European countries. Results presented in this paper focus on the European Practice in Haemodialysis centres from 8 European countries or regions following data collection from 2002 to 2004. These results will enable international comparison in practice and will stimulate further research and the development of new practice recommendations.

Address for Correspondance
Jean-Yves DE VOS
AZ Werken Glorieux
Glorieuxlaan 55
9600 RONSE
BELGIUM
devosjy@skynet.be

Key Words

  • European Practice in Haemodialysis
  • Haemodialysis
  • Prescriptions in Haemodialysis
  • Vascular Access

References

  1. De Vos JY, Elseviers MM. The EDTNA/ERCA European Practice Database. EDTNA/ERCA Journal 2002; 28 (2): 88
  2. M.Elseviers, JY. De Vos, J. Pancirova, A. Zampieron, E. Lindley, D. Green, M. Harrington. European Practice Database: Comparative results of the year 1 pilot project.
    EDTNA/ERCA Journal 2004; 30 (2): 64-70>
  3. JP.Van Waeleghem, M. Elseviers, JY. De Vos. EDTNA/ERCA Vascular Access recommendations for nephrology nurses.
    EDTNA/ERCA Journal 2004; 30 (2): 97-105
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European Study on Epidemiology and Management of Hepatitis C Virus (HCV) Infection in the Haemodialysis Population. Part 3: Prevalence and Incidence

Alessandra Zampierona, Heather Jayasekerab, Monique Elseviersc, Elizabeth Lindleyd, Jean-Yves DeVose, Ronald Visserf Maurice Harringtong

a Padua University Hospital (Italy); b,g Hope Hospital, Salford (United Kingdom); c University of Antwerp (Belgium); d St. James’s University Hospital, Leeds (United Kingdom); e Werken Glorieux, Ronse (Belgium); f Dianet Dialysis Centres, Amsterdam (The Netherlands).

An analysis of the literature showed a high prevalence of HCV in the European dialysis population in the nineties. The prevalence was similar in most countries in northern Europe, but infection was more common in France, Italy, Spain, Portugal and Greece and in Eastern European countries . The reported prevalence of anti-HCV-positive patients in the EDTA registry was 21% in 1992 and 18% in 1993 ranging from 1% in Finland to 42% in Egypt. The incidence of HCV, in new patients starting renal replacement therapy, ranged from 3% to 7% , and reported seroconversion rates during dialysis treatment varied between 1% and 16% per year.

The Research Board of EDTNA/ERCA undertook a research project investigating the problem of HCV infection in haemodialysis. We had already published the results of the centre policy investigation (11) and the description of patients with seroconversion during the one-year observation period (12). Within the framework of this HCV project, we were also able to obtain a better insight into the prevalence and incidence of HCV infection in the European dialysis population. This last part of the HCV study will be reported in this paper.

References

  1. Department of Health. Good practice guidelines for renal dialysis/transplantation units. Prevention and control of blood-borne virus infection. London: Crown Copyright, 2002.
  2. Cendoroglo Neto M, Draibe SA, Silva AE, et al. Incidence and risk factor for hepatitis B virus and hepatitis C virus infection among hemodialysis patients: evidences for environmental transmission. Nephrology Dialysis transplantation 1995; 10 (2): 240-46.
  3. Geerlings W, Tufveson G, Ehrich JHH, et al. Report on management of renal failure in Europe, XXIII. Nephrology Dialysis transplantation 1994; 9 (suppl 1): 6-25.
  4. Valdebarrano F, Jones EHP, Mallick NP. Report on management of renal failure in Europe, XXIV, 1993. Nephrology Dialysis transplantation 1995; 10 (suppl 1): 1-25.
  5. Touzet S, Kraemer L, Colin C, Pradat P, Lanoir D, Bailly F, Coppola RC, Sauleda S, Thursz MR, Tillmann H, Alberti A, Braconier JH, Esteban JI, Hadziyannis SJ, Manns MP, Saracco G, Thomas HC, trepo C. Epidemiology of hepatitis C virus infection in seven European Union countries: a critical analysis of the literature. HENCORE Group. (Hepatitis C European Network for Co-operative Research). European Journal of Gastroenterology Hepatology 2000 Jun; 12 (6): 667-78.
  6. trepo C, Pradat P. Hepatitis C virus infection in Western Europe. Journal of Hepatology 1999; 31 Suppl 1: 80-3.
  7. Chaveau P, Courouce AM, Lemarec N, et al. Antibodies to hepatitis C virus by second generation test in haeafre JM. Late seroconversion of C virus markers in haemodialysis patients. Kidney International Supplement 1993; 41: S153-6.
  8. Oliva JA, Maymo RM, Carrio J, Delgado O, Mallibodies to hepatitis C virus by second generation test in haemodialysed patients. Kidney International Supplement 1993; 41: S149-52.
  9. Jadoul M, Cornu C, van Ypersele de Strhou C. Incidence and risk factors for hepatitis C seroconversion in haemodialysis; a prospective study. The UCL Collaborative Group. Kidney International 1993; 44:1322-6.
  10. Jadoul M, Poignet JL, Geddes C, Locatelli F, Medin C, Krajewska M, Barril G, Scheuermann E, Sonkodi S, Goubau P; HCV Collaborative Group. The changing epidemiology of hepatitis C virus (HCV) infection in haemodialysis: European multicentre study. Nephrology Dialysis transplantation 2004; 19 (4): 904-9.
  11. Zampieron A, Jayasekera H, Elseviers MM, Lindley E, De Vos JY, Visser R, Harrington M.
    European study on epidemiology and management of hepatitis C in the haemodialysis population. Part 1: Centre Policy.
    EDTNA/ERCA Journal 2004; 30 (2): 84-90
  12. Zampieron A, Jayasekera H, Elseviers MM, Lindley E, De Vos JY, Harrington M, Ormandy P.
    Sero conversion of HCV negative patients: A European study on epidemiology and management of HCV haemodialysis patients.
    EDTNA/ERCA Journal 2006; 32 (1):
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Infection Control Practice Across Europe: Results of the EPD

Jean-Yves De Vos (1), Monique Elseviers (2), Maurice Harrington (3), Alessandra Zampieron (4), Hans Vlaminck (5), Paula Ormandy (6), Theodora Kafkia (7) for the EDTNA/ERCA Research Board.

(1) AZ Werken Glorieux, Ronse, Belgium, (2) University of Antwerp, Belgium (EPD project Co-ordinators), (3) Department of Renal Medicine, Salford Royal Hospitals NHS trust, Salford, UK, (4) Padua University Hospital, Italy, (5) University of Leuven, Belgium, (6) Health Care Practice R&D Unit, Salford, UK, (7) 2nd. I.K.A. Hospital, Thessaloniki, Greece.

Summary
The European Practice Database (EPD) project, developed by the EDTNA/ERCA Research Board, collects data on renal practice at centre level in different European countries. Results presented in this paper focus on infection control practice in haemodialysis centres from 8 different European countries or regions following data collection from 2002 up to 2004. The prevalence of hepatitis B (HBV), hepatitis C (HCV), human immune deficiency (HIV) and methicillin-resistant staphylococcus Aureus (MRSA) was studied as well as the use of screening and preventive actions. These results will enable international comparison in practice and will stimulate further research and the development of new practice recommendations.

KEY WORDS
European Practice
Haemodialysis
Infection control

Refences

  1. De Vos JY, Elseviers MM. The EDTNA/ERCA European Practice Database. EDTNA/ERCA Journal 2002; 28 (2): 88
  2. European Renal Association-European Dialysis and transplant Association.
    European Best Practice Guidelines for Haemodialysis (Part 1), 2002; 17 (Supplement 7): 72 – 87
  3. Elseviers MM, De Vos JY, Pancírová J, Zampieron A, Lindley E, Green D, Harrington M.
    European Practice Database: Comparative results of the year 1 pilot project.
    EDTNA ERCA Journal 2004; 30 (2): 64-70
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Paediatric Access Care in Europe: Results of the Paediatric Access Care (PAC) Project

An Demol (PAC project coordinator) (1), Jacqueline Knoll (PAC project coordinator) (2), Monique Elseviers (3), Maurice Harrington (4), Jean-Yves De Vos (5), Alessandra Zampieron (6), Paula Ormandy (7), Theodora Kafkia (8) for the EDTNA/ERCA Research Board.

(1) Paediatric Renal Unit, University Hospital of Leuven, Belgium; (2) Paediatric Renal Unit, University Hospital of Nijmegen, the Netherlands; (3) University of Antwerp, Belgium; (4) Department of Renal Medicine, Salford Royal Hospitals NHS trust, Salford, UK; (5) AZ Werken Glorieux, Ronse, Belgium; (6) Padua University Hospital, Italy; (7) Health Care Practice R&D Unit, Salford, UK; (8) 2nd. I.K.A. Hospital, Thessaloniki, Greece.

Summary
Part two of the Paediatric Access Care (PAC) project, a research project of EDTNA/ERCA, investigated PAC in HD and PD patients including the policy for the creation and maintenance of access, and the registration of access related complications that occurred during the registration year of 2004.
Data were collected from 39 centres of 13 European countries and included 379 paediatric patients. Fatal complications, resulting in terminating the use of the access, were noted in 59 HD and 22 PD patients.
Paediatric access care varied considerably between European centres and in many areas consensus or best practice evidence is still lacking. There is a need for recommendations for the paediatric renal nurse, handling access care in the paediatric renal population.

References

  1. Van Waeleghem JP, Elseviers MM, Lindley EJ
    Management of vascular access in Europe Part I: A study of centre based policies.
    EDTNA/ERCA Journal 2000; 26 (4): 28-33.
  2. Elseviers M, Van Waeleghem JP
    Management of vascular access in Europe: Part 2 – A multicentre study of related complications
    EDTNA/ERCA Journal 2003; 29 (1): 45-50.
  3. Elseviers MM, Van Waeleghem JP
    Complications of vascular access: results of a European multi centre study of the EDTNA/ERCA Research Board.
    EDTNA/ERCA Journal 2003; 29 (3): 163-7.
  4. Vijt D, Castro MJ, Endall G, Elseviers MM, Lindley E.
    Post insertion catheter care in Peritoneal Dialysis (PD) centres across Europe: Results of the PI project of the Research Board.
    EDTNA/ERCA Journal 2004; 30 (1): 42-46
  5. Vijt D, Castro MJ, Endall G, Elseviers MM, Lindley E.
    Post insertion catheter care in Peritoneal Dialysis (PD) centres across Europe: Complication rate and individual patients’ outcome.
    EDTNA/ERCA Journal 2004; 30 (2): 91-96
  6. Brem AS, Lambert C, Kitsen J, Somers M, Shemin DG.
    Chronic Dialysis and Access-related morbidities in children
    Dialysis & transplantation 2005; 34 (5): 278-282
  7. National Kidney Foundation. K/DOQI Clinical Practice Guidelines for Vascular Access Update 2000
    http//www.kidney.org/professionals/kdoqi/guidelines
  8. Van Waeleghem JP, Elseviers MM, De Vos JY, on behalf of the Research Board of EDTNA/ERCA.
    EDTNA/ERCA Vascular access recommendations for nephrology nurses.
    EDTNA/ERCA Journal 2004; 30 (2): 97-105
  9. De Vos JY, Elseviers ME, Harrington M, Zampieron A, Vlaminck H, Ormandy P, Kafkia T, for the EDTNA/ERCA Research Board.
    European Practice in haemodialysis: results of the EPD.
    EDTNA/ERCA Journal 2006; 32 (1): ????
  10. Watson AR, Gartland C.
    Guidelines by an ad hoc European Committee for Elective Chronic Peritoneal Dialysis in Paediatric Patients
    Peritoneal Dialysis International 2001; 21 (3): 240-244
  11. Flanigan M, Gokal R.
    Peritoneal catheters and exit-site practices toward optimum peritoneal access: a review of current developments.
    Peritoneal Dialysis International 2005; 25: 132-139
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Sero-conversion of HCV Negative Patients: A European study on the Epidemiology and Management of HCV Haemodialysis Patients

Alessandra Zampieron1 (project coordinator), Heather Jayasekera2 (project coordinator), Monique Elseviers3, Elizabeth Lindley4, Jean-Yves DeVos5, Maurice Harrington6, Paula Ormandy7

1Padua University Hospital, Italy
2,6 Salford Royal Hospitals NHS trust, Salford, UK
3 University of Antwerp, Belgium
4 St. James’s University Hospital, Leeds, UK
5 Werken Glorieux, Ronse, Belgium
7 Institute of Health and Social Care Research, University of Salford, UK

Key words:
Hepatitis C virus (HCV)
Epidemiology
Seroconversion

Biodata
Alessandra Zampieron has been working in renal paediatric transplantation for nine years. She is currently working in the Nursing School of Padua University, Italy. Heather Jayasekera is working as renal hypertension nurse specialist in Salford Royal Hospitals NHS trust, Salford UK.

Address for correspondence
Alessandra Zampieron
Corso di Laurea in Infermieristica, Universita di Padova
Azienda Ospedaliera di Padova
Palazzina dei Servizi (II piano)
Via Giustiniani 235100 Padova,
Italy
zampieron@lycos.com

Abstract
This paper reports part of the findings from a larger study reported earlier, the European study on epidemiology and the management of HCV in the haemodialysis population.1 Centres recruited to the larger study were monitored for a further one year observation period to measure and generate a deeper understanding of HCV sero-conversion. From 4724 patients who were studied at the baseline, in 68 centres, only 13 patients were found to have sero-converted. These sero-conversions occurred in 7 hospitals within 5 different countries. Possible routes of transmission and risk factors are described with respect to the individual centres and good practice recommendations based on current evidence presented.

References

  1. Zampieron A, Jayasekera H, Elseviers M, Lindley L, DeVos J-Y, Visser R, Harrington H. European study on epidemiology and management of HCV in hemodialysis population. part 1: centre policy. EDTNA/ERCA Journal 2004; XXX (2) ; 84-90.
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The Research Board of EDTNA/ERCA: Research Activities and Deliverables

Maurice Harrington1, Monique Elseviers2, Jean-Yves de Vos3, Alessandra Zampieron4, Paula Ormandy5, Theodora Kafkia6.

1 Salford Royal Hospitals NHS trust, United Kingdom
2 University of Antwerp, Belgium
3 Werken Glorieux Dialyseafdeling, Ronse, Belgium
4 Diploma Universitario per infermiere, Padova, Italy
5 University of Salford, United Kingdom
6 University Hospital, Thessaloniki, Greece

Key words
Research Board,
Multi-professional research,
Multi-disciplinary research,
Collaborative research project,
Comparative audit,
European Practice Database,
Renal care

Summary
The Research Board (RB) of EDTNA/ERCA was formed ten years ago to provide opportunities for our members to participate in collaborative research projects at a European level. It provides educational support for our members in research methodology via workshops at conference and in articles published in the Journal. The group has completed a total of seven collaborative research projects in diverse areas of renal care and has recently developed an ambitious new project, the European Practice Database (EPD). The EPD project aims to capture the current practice of renal care professionals in European centres on a three-year repeating cycle. The results of projects are presented at conference and at international scientific meetings by invitation and abstract submission. Recommendations, guidelines or educational material are produced collaboratively with the renal multi-disciplinary community.

Introduction
The Research Board (RB) of EDTNA/ERCA was formed in 1996 under the chair of Dr Elizabeth Lindley, as the collaboration and financial investment of the association with the EDTA register was proving to be of no benefit to the association’s members. It was decided to invest in the development of its own programme of research. The aim was to promote multi-disciplinary collaborative research at a European level. Research projects are chosen every year to study topical issues in different areas of renal care. Seven collaborative projects have been successfully completed in this period covering a wide range of research questions.

In 2002/3 the RB embarked on an ambitious project to develop a European multi-professional registry of renal practice, collecting data on a repeating three-year cycle. This project collects a wide range of renal practice data from the multi-professional team and has the potential to collect data at national level in specific areas of interest to the national situation.
As Michel de Montaigne noted; “nothing is so firmly believed as that which we least know”.

Methods
Collaborative research projects are chosen each year to study proposed research questions in different areas of renal care. Two co-ordinators with a research interest in this area of practice are invited to work with the research board team. A recognised international expert in the subject is invited to provide advice and guidance to the project and attend some of the research meetings and final presentation at conference. A research design and protocol is developed with the assistance of the research statistician and this is submitted with a proposed project budget to the Executive and Financial committee for approval. On project approval the two co-ordinators with a special interest and relevant expertise are invited to join the RB for the period of the study (2-3 years).

A questionnaire is developed over a period of one year during the RB meetings with the essential support and advice of the RB statistician who provides invaluable expert advice on the validity of the questions. The questionnaire is pilot tested in a number of countries and where required, help text is added to the questionnaire. The questionnaire is translated into the seven languages of the association and a computerised version is produced (in later projects a paper version was also produced).

The marketing of the project takes place via advertising through the newsletter, the Journal, at conference and via the association’s European network. One of the strengths of the association is its European network of key members and active volunteers with an interest in research. These invaluable contacts are a tremendous help in recruiting centres in each country to join the projects and help in achieving good data returns.

The data collection is aided by the use of centrally organised administration (RB office) for the distribution, registration, ongoing advice and support to participants of the projects. The research office follows up the data return over the next 6 months with final analysis and initial presentation of results for discussion at the RB meeting just prior to conference. The review of these results is essential in order to prepare the final presentation. The co-ordinators thus gain valuable experience in all phases of the research process up to the final presentation and publication of results. Participants in the centre receive copies of the PowerPoint presentation to present at their own hospital, thus gaining valuable experience and thus aiding in the dissemination and discussion of the findings.

Results
The RB has developed seven collaborative research projects and the EPD over the last 10 years.

The date and participation rate of the projects are listed in Table 1.

Project title Project date Centre participation Patients
Vascular Access
1996 (part1)
103
-
 
1997 (part 2)
47
1386
Dietary Advice
1997
52
-
Pre-treatment counselling
1998
35
-
Water treatment
1999 -2000
69
-
Post insertion catheter care
2000
54
298
HCV
2001 (part 1)
136
-
 
2002 (part 2)
73
5124
European Practice Database
2003-5
276 centres
(8 countries)
21,861 (HD & PD)
Paediatric access care
2005
37
379
Table 1 Date and participation rate of the projects

The Research Board and co-ordinators have published a total of 43 papers/articles, two water treatment guidelines, and recommendations for vascular access 1-32. The outcome from the findings of the pre-treatment counselling project was the need for better patient information. We are at present developing a patient information Web site to fulfil this identified need.

Discussion

The main problems encountered have been:

  • Financial limitations due to reducing contributions to the association from industry in the prevailing economic climate.
  • Limitation of volunteer time due to pressures of work and personal life.
  • Less well developed volunteer network and contacts in some countries.

The RB projects have professional support from Monique Elseviers the RB statistical advisor for the administration, statistical support, presentation and publication of the projects. Without this excellent service it would be impossible to run such an active and dynamic research programme. We are fortunate that a significant amount of the input is generously offered on a volunteer basis. Volunteer overload is not uncommon in today’s pressurised working environment. However as the philosophy of the group is so positive and dynamic each gains enthusiasm and energy from each other.

Future plans of the RB are to investigate particular research questions that have been highlighted from the EPD project in greater depth involving fewer centres.

Conclusions
These first 10 years of the RB have been fruitful in both the scope and the range of research in renal practice investigated.

It has given members of the association the opportunity to question their practice and the opportunity to study in depth particular issues of interest at a European level. It is only by actively being involved in research that the association will be able to contribute and identify the need for guidelines, recommendations and education in European renal care.

Comparative audit systems such as the EPD project offer a practical and useful way of monitoring trends in clinical practice, perhaps highlighting areas of unusual practice and generating hypotheses for further research. The project reports provide a rich source of information about the economic, legal and cultural framework of national health care systems. The EPD has the potential over the coming years to become a valuable resource of data for the members of the association and renal community.

Acknowledgements
We would like to thank all the present and past members of the Research Board, project co-ordinators, expert advisers, Interest Groups, translators, The Journal team, The Executive and Financial Subcommittee, Head Office, Mediqal Ltd and The Research Office.

We would also like to thank all of the participating members of the projects for giving their valuable time in submitting data.

Elizabeth Lindley UK, Willem Geerlings NL, Neville Selwood UK, Gunilla Gustavsson SE, Jean-Yves De Vos BE, Monique Elseviers BE, Paula Ormandy UK, Theodora Kafkia GR, Jean-Pierre Van Waeleghem BE, Gail Nevett UK, Christa Nagel NL, Carin Potting NL, Franta Lopot CZ, Andre Stragier BE, Tony Goovaerts BE, Maria da Silva-Gane UK, Doris Rosenkranz AT, Gerry Endall UK, Maria José Castro ES, Ram Gokal UK, Heather Jayasekera UK, Rosa Moll ES, Maria Angeles Prieto ES, Alessandra Zampieron IT, Ronald Visser NL, Hans Vlaminck BE, Mark Forrest UK, Michel Jadoul BE, Denise Vijt BE, Ian Morgan UK, Diane Green UK, Borge Rolfsen NO, Jitka Pancirova CZ, Luc Picavet BE, Dirk De Weerdt BE, Colin Aldridge, Jan Aldridge, Steve Farrington and Jago Taylor UK, Georgia Thanasa GR, An Demol BE, Jacqueline Knoll NL, Cordelia Ashwanden GB.

References

  1. Lindley EJ. Introduction to the research forum. EDTNA/ERCA Journal. 1996 Jul-Sep; 22 (3): 46-7
  2. Lindley EJ. EDTNA/ERCA research forum. EDTNA/ERCA Journal. 1997 Apr-Jun; 23 (2): 50-1
  3. Elseviers M. M Assessment of problems: which study design? EDTNA/ERCA Journal. 1999 Jul-Sep; 25 (3): 23-6. Review
  4. Nevitt G, Nagel C, Elseviers MM, Lindley EJ. Provision of dietary advice in selected centres across Europe. EDTNA/ERCA Journal. 2000 Oct-Dec 26 (4): 22-7.
  5. Van Waeleghem JP, Elseviers MM, Lindley EJ. Management of vascular access in Europe Part I: A study of centre based policies. EDTNA/ERCA Journal 2000 Oct-Dec 26 (4): 28-33.
  6. Lindley EJ, Lopot F, Harrington M, Elseviers MM. treatment of water for dialysis: A European survey. EDTNA/ERCA Journal 2000 Oct-Dec; 26 (4): 34-40.
  7. Van Waeleghem JP, Elseviers MM, Lindley EJ. A review of vascular access management in Europe. Nephrology News Issues. 2000 Nov; 14 (12): 30-4.
  8. Lindley EJ, Lopot F, Harrington M, Elseviers MM. treating and monitoring water for dialysis in Europe. Nephrology News Issues 2001 Jan;15 (2):27, 30, 33-6. Review.
  9. Elseviers M, Moll R, Jadoul M, Jayasekera H, Zampieron A, Harrington M, De Vos JY; EDTNA/ERCA Collaborative Research Programme. Epidemiology and management of hepatitis C in haemodialysis patients: an informal multidisciplinary review. EDTNA/ERCA Journal 2001 Jul-Sep;27 (3): 156-62.
  10. Jayasekera H. Hepatitis C virus: overview of clinical and technical perspectives.
    EDTNA/ERCA Journal 2001 Jul-Sep; 27 (3): 125-8
  11. Da Silva-Gane M, Goovaerts T, Elseviers MM, Lindley EJ; EDTNA/ERCA Collaborative Research Programme. Information and counselling for patients approaching end-stage renal failure in selected centres across Europe.
    EDTNA/ERCA Journal 2002 Jan-Mar;28 (1): 49-55.
  12. Elseviers MM. Statistics Corner: N = the sample size: please handle with respect!
    EDTNA/ERCA Journal 2002 Apr-Jun;28 (2): 77-8.
  13. Lindley E, Canaud B. New European guidelines for microbiological quality of dialysis fluid: a review. Nephrology News Issues. 2002 Jun;16 (7): 46-8, 49
  14. EDTNA/ERCA produces draft nutritional guidelines for renal patients.
    Nephrology News Issues 2002 Jun; 16 (7): 34, 39.
  15. Lindley L. EDTNA/ERCA Guidelines: Technical section EDTNA/ERCA Journal 2002 Jul-Sep; 28 (3): 107-15.
  16. Elseviers MM. Statistics Corner: Distribution of study observations. EDTNA/ERCA Journal 2002 Jul-Sep;28(3):153-5
  17. Elseviers M, Van Waeleghem JP Management of vascular access in Europe: Part 2 – A multicentre study of related complications. EDTNA/ERCA Journal 2003 Jan-March: 29 (1): 45-50.
  18. Elseviers MM. The mysterious standard deviation. EDTNA/ERCA Journal 2003 Apr-Jun;29 (2): 101-3
  19. Harrington M. European Practice Database (EPD) update. EDTNA/ERCA Journal 2003 Apr-Jun: 29 (2): 103
  20. Elseviers MM, Van Waeleghem JP. Identifying vascular access complications among ESRD patients in Europe. A prospective, multicenter study. Nephrology News Issues 2003 Jul;17 (8): 61-4, 66-8, 99.
  21. Elseviers MM, Van Waeleghem JP. Complications of vascular access: results of a European multi centre study of the EDTNA/ERCA Research Board. EDTNA/ERCA Journal 2003 Jul-Sep;29 (3):163-7.
  22. Vijt D, Castro MJ, Endall G, Elseviers MM, Lindley E. Post insertion catheter care in Peritoneal Dialysis (PD) centres across Europe: Results of the PI project of the Research Board. EDTNA/ERCA Journal 2004; 30 (1): 42-46
  23. Zampieron A, Harrington M, Elseviers MM, Lindley E, De Vos JY, Visser R.
    The Research Board of the EDTNA/ERCA. EDTNA/ERCA Journal 2004; 30 (2): 59-61
  24. Vijt D, Castro MJ, Endall G, Elseviers MM, Lindley E. Post insertion catheter care in Peritoneal Dialysis (PD) centres across Europe: Complication rate and individual patients’ outcome. EDTNA/ERCA Journal 2004; 30 (2): 91-96
  25. Van Waeleghem JP, Elseviers MM, De Vos JY, on behalf of the Research Board of EDTNA/ERCA. EDTNA/ERCA Vascular access recommendations for nephrology nurses. EDTNA/ERCA Journal 2004; 30 (2): 97-105
  26. Morgan I, Lindley EJ. Guidelines on activated carbon filtration. EDTNA/ERCA Journal 2004; 30 (2): 106-112.
  27. Zampieron A, Jayasekera H, Elseviers MM, Lindley E, De Vos JY, Visser R, Harrington M. European study on epidemiology and management of hepatitis C in the haemodialysis population. Part 1: Centre Policy. EDTNA/ERCA Journal 2004; 30 (2): 84-90
  28. Elseviers MM, De Vos JY, Pancírova J, Zampieron A, Lindley E, Green D, Harrington M. European Practice Database: Comparative results of the year 1 pilot project. EDTNA/ERCA Journal 2004; 30 (2): 64-70
  29. Pancirova J, Kracikova J, Lopot F, De Vos JY, Elseviers MM. European Practice Database in the Czech Republic. EDTNA/ERCA Journal 2004; 30 (2): 71-74
  30. Lindley E, Pancírová J, Kracikova J, Lopot F, Green D, Harrington M, De Vos JY, Elseviers MM. Management of renal anaemia: Comparison of practice in the Czech Republic and Northern England. EDTNA/ERCA Journal 2004; 30 (2): 75-83
  31. Elseviers MM Statistics Corner. The box plot: an alternative way to present a distribution of observations. EDTNA/ERCA Journal 2004; 30 (2): 114-116
  32. Elseviers MM. Statistics Corner. The difference between two means: is it significant? EDTNA/ERCA Journal 2004; 30 (4): 238-240
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Transplant Practice in Europe: Selection of Patients

Theodora Kafkia1, Jean-Yves De Vos2, Monique Elseviers3, Alessandra Zampieron4, Paula Ormandy5, Maurice Harrington6

1 Dialysis Unit, 2nd IKA-ETAM Hospital, Thessaloniki, Greece
2 Werken Glorieux, Ronse, Belgium
3 University of Antwerpen, Belgium
4 Padua University Hospital, Italy
5 University of Salford, Institute for Health and Social Care Research, UK
6 Salford Royal Hospitals NHS trust, Salford, United Kingdom

Keywords:
transplant
Patients
European Practice Database

Abstract
This paper reports the findings from the European Practice Database project1 providing an overview of transplant practice in Europe and patient selection. From the 276 centres surveyed 25 recorded performing patient transplants across eight different countries. The overall figures indicate that the waiting list for transplants is made up of 38% women and 9% of patients above the age of 65 years. All countries offered pre- transplant counselling and screening and post-transplant follow-up, but the extent to which these activities occurred varied. The waiting/transplant ratio ranged from one in Norway to eight in Slovakia. Differences still exist as a result of country specific policies and legislation regarding transplantation.

References

  1. Elseviers M, De Vos JY, Pancirova J, Zampieron A, Lindley E, Green D, Harrington M. EDTNA/ERCA Research Board. European Practice Database: comparative results of the year 1 pilot project. EDTNA ERCA Journal 2004 Apr-Jun; 30 (2): 64-70
  2. Lindley E, Green D, Harrington M. European Practice Database in England (north). Booklet of the EPD results, 2003.
  3. Scottish transplant Group Report. An organ donation strategy for Scotland. Edinburgh, June 2002.
  4. Theodora Kafkia, Michael Kourakos, Lagkazali Basiliki, Eleftheroudi Marianna, Tsougia Panagiota, Doula Maria, Laskari Anastasia, Thanasa Georgia, Jean-Yves De Vos, Monique Elseviers. European Practice Database: Results of Greece. EDTNA/ERCA Journal 2005; 33 (1): 43-48
  5. Pancirova J. European Practice Database in Czech Republic. Booklet of the EPD results, 2003.
  6. Alessandra Zampieron, Monique Elseviers, Jean-Yves DeVos, Andrea Favaretto, Sandro Geatti, Maurice Harrington. The European Practice Database (EPD): results of the study in the North-East of Italy. EDTNA/ERCA Journal 2005; 31 (1): 45-49
  7. Roels L, Deschoolmeester G, Vanrenterghem Y. A profile of people objecting to organ donation in a country with a presumed consent law: data from the Belgian National Registry. transplant Procedures 1997; 29: 1473-1475.
  8. Michielsen P. Presumed consent to organ donation: 10 years’ experience in Belgium. Journal of the Royal Society of Medicine 1996; 89: 663-666.
  9. Kennedy I, Sells RA, Daar AS, et al. The case for “presumed consent” in organ donation. Lancet. 1998; 351: 1650-1652.
  10. De Vos JY, Elseviers MM. The EDTNA/ERCA European Practice database. EDTNA/ERCA Journal 2002; 28 (2): 88.
  11. Elseviers M, De Vos J-Y, Pancirova J, Zampieron A, Lindley E, Green D, Harrington M. European Practice Database: comparative results of the year 1 pilot project. EDTNA/ERCA Journal 2004; 32 (2): 64-70.
  12. trevitt R, Whittaker C, Ball EA. Evaluation of potential transplant recipients and living donors. EDTNA/ERCA Journal 2000; 26 (1): 26-28
  13. Rochera Gaya A. The evolution of kidney transplantation in Spain. Role of the nurse. EDTNA/ERCA Journal 1999: 25 (1); 15-18
  14. Randhawa G. The challenge of kidney transplantation among minority ethnic groups in the UK. EDTNA/ERCA Journal 2004; 30 (4): 182-187
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