Nephrol Dial Transplant (1999) 14: 2106-2109
© 1999 European Renal Association-European Dialysis and Transplant Association
Dialysis and Transplantation News
30 years of the Dutch Kidney Foundation
Correspondence and offprint requests to: Paul Beerkens, current Managing Director, Nierstichting Nederland, P. O. Box 2020, 1400 DA Bussum, Netherlands. E-mail to mwoudstra{at}nierstichting.nl. Information at http/www.nierstichting.nl.
Introduction
In 1966 Dr William Drukker, co-founder and first secretary–treasurer of the EDTA, was consulted by a colleague of a close friend, Henk Vogel, director of a firm of accountants in Amsterdam. This colleague had end-stage kidney disease (ESKD). However, at that time dialysis facilities were extremely scarce and long-term haemodialysis could only be arranged for this patient with the greatest effort. For Drukker and Vogel this was the real motive to establish the Dutch Kidney Foundation (DKF). Independently from their initiatives the Kiwanis Service Club of Amsterdam formed a society for the financial support of the DKF (SSDKF) in 1968. From that time on the DKF and its supporting society have worked together in a close, fruitful, and very successful relationship.
Mission statement
The DKF supports initiatives, action, advice, information, research and development in order to achieve the following objectives:
- (i) adequate dialysis and transplantation facilities for all patients with ESKD;
(ii) further improvement in treatment and therapy for patients with kidney disease, aimed particularly but not exclusively at patients with ESKD;
(iii) social and financial support for patients with ESKD;
(iv) applied as well as fundamental scientific research within the broad scope of nephrology;
(v) prevention of kidney diseases.
Organization
The DKF is controlled by a board of nine people, elected by co-option. Two members represent the SSDKF. The DKF and SSDKF are supported by an office of 34 people. The DKF is advised by four councils:
- (i) the Scientific Council (ScC)
(ii) the Social Committee (SoC)
(iii) the Dialysis Advisory Committee (DAC)
(iv) the Transplant Advisory Committee (TAC)
On the basis of 5-year plans, these four advisory councils and the office develop annual programmes. Depending on the financial position of the foundation and the spending in previous budgets, the board awards budgets for the coming year. The four advisory committees are responsible for the execution of their annual programmes. The office prepares the programmes for information and direct mailing campaigns.
The SSDKF draws up plans and organizes fund-raising in 27 regions of about half a million inhabitants each. Moreover the SSDKF is responsible for the collection of donations and various other fund-raising activities.
The Association of Kidney Patients, with its 5000 members, is independent, but is financed almost 100% by the fund-raising of the DKF. The patients' association receives nearly 25% of the proceeds of the annual income as far as obtained by collecting boxes. Its activities include the promotion of mutual contacts, medical information, interests and a programme for employment exchange.
Rank and file
In Holland the DKF is a widely-known fund-raising organization, in third place to the Cancer Foundation and the Heart Foundation. Fund-raising is supported by over 60 000 volunteers by means of collection boxes during the annual collection week. Moreover, 500 000 people send donations by post every year or every other year. So in 1998 the DKF received an income of nearly 30 million Dutch guilders, equivalent to 13.3 million Euros. The DKF became one of the first organizations awarded the hallmark for proper fund-raising and subsidising practices by the national authority for charities in the Netherlands.
More than 100 volunteers are engaged in managing and organizing activities of the DKF and also in accompanying people with ESKD on holidays and excursions.
Present status of kidney replacement therapy
In the Netherlands with a population of 16.2 million inhabitants, dialysis treatment is given to about 4500 patients in 50 well-distributed centres. Four of them are specialized in dialysis for children. Nearly 1200 (29%) of the patients undergo peritoneal dialysis, one-fifth of them CCPD and four-fifths CAPD.
Nearly 45% of the patients under 45 are PD patients but only 10% of patients over 75 are on PD. Only 2% receive their haemodialysis at home. Of patients under 15, only 50 are on dialysis and more than 100 have functioning grafts.
About 500 kidney transplants are performed annually in seven academic hospitals, 400 from cadaveric donors and nearly 100 from living donors. At present nearly 1200 patients are on the waiting list. In total 700 grafts from living donors and over 3800 cadaveric grafts enable about 4500 people with kidney disease to lead a more or less normal life.
A survey of important activities
From the start of the DKF the ScC has activated and stimulated scientific research, not only by financial support but also by suggestions for improvement in research protocols. Already in 1969 the SoC began to financially support individual dialysis patients in order to compensate them for their loss of income due to kidney disease. This committee also started to organize and finance holidays abroad, initially for 4-day periods in between two dialysis sessions, and later for longer periods of time with locally provided dialysis facilities.
Home haemodialysis was initially facilitated by financing dialysis machines. Active haemodialysis away from hospital was promoted by setting up and financing dialysis hotels (Diatels). The development of CAPD/CCPD was supported by financing the training of nurses. Strong support was given to encourage dialysis centres for children.
Much attention has been paid to the promotion of kidney transplantation, for instance by financing Belzer perfusion machines and—from the late seventies onwards—by appointing transplant co-ordinators.
Donor cards were promoted and distributed and strong support has been given to the development of post-mortal kidney donation.
From 1988 onwards the stagnation in the increase of the number of kidney transplants became a major concern and more attention was paid to this important issue. A joint venture between Eurotransplant and the DKF resulted in the successful European Donor Hospital Education Programme, aimed at improving communication with the next-of-kin where a family member was dying in hospital. The DKF strongly advocated the introduction of a law on organ donation. During the discussions in parliament the DKF facilitated a co-ordinated lobby with the patients' organizations based upon opinion polls, to introduce improvements and to counter opposition to the law. Recent subsidies have resulted in a pilot protocol for the approach of the next-of-kin, a concept registration form of all deceased in hospital including what steps were taken to identify potential donors and contact the relatives. Awaiting formal regulation by the government, the DKF is financing insurance premiums for inadvertent damage in living donors. The DKF has in fact always financed pilot schemes and new developments—where necessary side-stepping bureaucracy and other obstructions—until regular financing was provided. For instance in 1985 DKF spent 2 million Euros to introduce at least one shock-wave lithotripter. It took until 1987 before regular funding by sick-funds and health insurance enabled Dutch hospitals to buy another two machines.
Advisory Committees and current activities
The Scientific Council
The Scientific Council of 11 people meets four times a year to discuss the proposals submitted for research projects. At present these projects concern research on:
- Mechanism of renal diseases
- immunology
physiology
genetics
Clinical aspects
- paediatric nephrology
adult nephrology
urology
Renal replacement therapy
- dialysis
transplantation
On average the Scientific Council spends 4–5 million Euros a year. This is about 50% of the total research effort for the topics mentioned. The DKF gives subsidies for pilot projects and for fundamental and applied research. The ScC also advises the TAC and DAC in connection with their projects for implementing new knowledge (as opposed to finding new knowledge) or for implementing new knowledge into treatment.
The Scientific Council provides subsidies for the following types of project:
projects of 3 or 4 years
programmes of 4–6 years
education and training of scientific personnel:
- scientific visits abroad for 1–6 months for students
scientific visits abroad for 1–12 months for scientific staff
fellowships for post-doctoral staff of 3–5 years,
including a research practical abroad
special chairs as professor for outstanding scientists
Awards
An annual award for the best presentation by a young research scientist in co-operation with the Dutch Association for Nephrology.
And during the Lustrum festivity:
the prestigious award for the group with the best results in the past 5 years
a reward for the best thesis in the past 5 years.
It should be noted that the Scientific Council makes a great effort in improving submitted proposals by commenting on these proposals in long letters with critical remarks and questions that need to be answered satisfactorily before a subsidy is granted.
One of the main concerns is the stagnation of government finance for research. The effect on the field of research for kidney diseases is that the activities of senior research staff, who could produce satisfactory proposals and guide young research personnel, are reduced. In this way the number of proposals that request financing from the DKF is also stagnating. A new initiative is the start of a summer school and an increase in pilot projects and post-doctoral fellowships. Special attention is given to the fields of paediatric nephrology, urology, and paediatric urology. In the future the programme subsidies will be given to outstanding post-doctoral staff with the objective of training them as research supervisors.
The Social Committee
The SoC spends about 2.5 million Euros to support individual patients who find themselves in a difficult financial position due to their ESKD. About 1000 dialysis patients receive monthly support for household help, sickness insurance, diet costs, dental treatment, increase in mobility, and generally for those extra costs that are not covered by social insurance. As the number of elderly patients is increasing and these patients are of a generation that receive only a state pension, the cost of these individual subsidies will increase in the near future because of stagnation in government funding for these state pensions.
About 1000 patients use the annual holiday programme offered by the SoC. They go abroad in groups of 15 patients, with their partners, accompanied by two dialysis nurses and a hostess. Currently special steps are being taken to compensate for the decreased availability of dialysis nurses. About half of the patients prefer individual holidays with their families in campers, bungalows, or apartments abroad, also provided by the holiday programme. The foreign dialysis centres which supply the treatment for the group holidays and for the patients who have their own apartments, are inspected periodically by the Social Committee.
Finally, a special employment exchange for ESKD patients was established. The Association of Kidney Patients took responsibility of it after the successful start.
The Dialysis Advisory Committee
The Dialysis Advisory Committee provides subsidies for the education and training of therapists and general practitioners. The therapists include nephrologists, social workers, nurses, dieticians and technicians. The main effort is targeted at supporting the introduction of a quality control system. Development subsidies were given in previous years. The DAC also finances and supervises the execution of projects to investigate and improve the formal education of children who receive dialysis treatment, and to investigate the permanent physical and social consequences of dialysis during youth. A project was also started to evaluate the scope of the education required for children on dialysis treatment, including possible solutions for those who had fallen behind. The focus of attention is the project in which the factors for successful dialysis are investigated and in which requirements for adequate dialysis with regards to quality of life are developed. All new patients in about 40 dialysis centres participate in this so-called NECOSAD project for 4 years.
The Transplant Advisory Committee
The TAC stimulates research and analysis into the facts which can improve the number and quality of donated kidneys. The committee is involved in improving information to both the general public and the medical profession, especially in hospitals, and also with the introduction of measures to improve the organization of donation procedures. At present the main concern is to increase donor awareness and improve donation procedures in hospitals. The TAC hopes that the prospective registration of each deceased will soon be introduced in order to gain further insight about the real donor potential as well as the most important negative factors affecting the availability of donor potential. In a recent study called Don Quichot—Donor Question Charting for Organ Transplantation—carried out in 11 hospitals, it was established that the question of organ or tissue donation only came up with 23% of the deceased and only 26% of the next-of-kin agreed with donation. Apart from these negative results, it was noted that the introduction of a registration form itself promoted increased donor awareness. The TAC is convinced that further improvements can be expected following the introduction of the Dutch organ donation law last year.
Further activities to encourage donation procedures are the support for the organization and training of transplant co-ordinators, subsidies for information to medical staff, support for meetings with next-of-kin of deceased donors, but also for the development of a Hospital Attitude Test to promote organ donation and a protocol for approaching the next-of-kin. Apart from these initiatives the introduction of deceased donors continues to be supported and there are various measures to increase the number of living donors. As to the general public, the DKF encourages steps to start regional and local meetings among the general public to discuss organ donation, to increase transplantation awareness, and to stimulate the use of the donor registration form. With the law a general donor registration was introduced for the whole country. Nearly 40% of the adult population has returned the registration forms and over 55% of these have stated their positive attitude as a potential donor.
The DKF is stimulating analysis of the present registration in order to target future campaigns at those sectors of the public which responded in low numbers or not at all.
Information
The DKF organizes courses and symposia and supplies information material for the medical staff of dialysis and transplant centres. Television programmes and special television documentaries are broadcast for the general public. Information is also available on the Internet and in leaflets distributed in hospitals and fairs, at general practitioner surgeries, and pharmacies. For its own members the DKF has a magazine and a special paper during the collection period.
If similar activities do not exist in your country or region, the DKF hopes this summary may inspire you to initiate similar activities which, in our opinion, will be beneficial to medical research and improvement in the treatment and social well-being of your patients. Finally, the DKF would welcome further contacts with similar organizations abroad for mutual benefits.
Acknowledgments
The author thanks Dr E. W. Boeschoten, Prof. Dr J. M. Wilmink, and Prof. Dr P. E. de Jong for their help and advice in relation to this paper.
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