Patient education in The Netherlands

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Patient education in The Netherlands
Jozien M. Bensinga,*, Adriaan Visserb, Hans Saanc
aDepartment of Health Psychology, Netherlands Institute of Primary Care (NIVEL), University of Utrecht,
P.O. Box 1568, 3500 BN Utrecht, The Netherlands bHelen Dowling Institute for Biopsychosocial Medicine, Utrecht, The Netherlands
cNational Institute for Health Promotion, Woerden, The Netherlands
Received 20 February 2000; received in revised form 16 October 2000; accepted 16 November 2000
Abstract
This article presents the development of patient education (PE) in The Netherlands from a historical perspective. A
description is given of the first pioneering years from the 70s till the late 80s, in which early topics like the organization of PE,
the orchestration of PE between different disciplines, the role of the social environment, the provision of PE in difficult patient
groups and — most of all — the technical development of educational materials took the time and attention of the growing
group of professionals that were engaged in patient education. Recent developments concern the legal aspects of PE, national
policy, the role of health insurance, the position of patient organizations and the development of patient education in specific
professional groups, e.g. general practitioners, nurses, physiotherapists, pharmacists, and dentists. There is no doubt that
patient education has been professionalized considerably during the last decades. Nevertheless, new issues emerge and some
old issues still need to be solved. The effective use of information material, the need for counseling as part of PE, and the
relevance of coordination of care are longtime, but still actual problems in PE. More recent issues are the pressures on PE
because of capacity restraints, the influence of the media and perhaps most of all: the apparent need for a patient-centered
attitude and a more two-sided way of communication. Finally, the future policy topics in the Dutch patient education are
discussed. # 2001 Elsevier Science Ireland Ltd. All rights reserved.
Keywords: Patient education; History; Restraints; Policy; The Netherlands
1. Introduction
In the last 30 years, Dutch patient education has
been strongly developed in hospitals as well as in
primary health care. After pioneering years since the
beginning of the 70s, the implementation of patient
education has been gradually incorporated in several
health care professions. Patient education is now an
integrated and well accepted part of the communication
in health care [1]. During the years, several issues
were emerged, both in the structure and process and
content of patient education. Some of these issues
have been solved quite well, others have proven to be
quite stubborn. Besides, changing conditions in health
care system, and advancing insights in the efficacy and
effectiveness of patient education have raised several
new challenges that need be addressed in the future.
2. Pioneering years of patient education
Since the beginning of the 70s, patient education
(PE) has received a modest, but steady stream of
Patient Education and Counseling 44 (2001) 15–22
* Corresponding author. Tel.: þ31-30-27-29-666; fax: þ31-30-27-29-729. E-mail address: j.bensing@nivel.nl (J.M. Bensing).
0738-3991/01/$ – see front matter # 2001 Elsevier Science Ireland Ltd. All rights reserved. PII: S 0 7 3 8 - 3 9 9 1 ( 0 1 ) 0 0 0 9 7 - 0

attention from health policy makers as well as health
care providers and researchers. The need for systema-
tic patient education was firstly felt in the hospital
world. Studies in the US and the UK showed effects of
PE on the length of stay in hospitals, reducing the
health care costs. Later on cultural changes (including
patient empowerment), rapid developments in health
care technology, and the growing differentiation
among medical specialists influenced the need of
PE [2].
In contrast, a lot of satisfaction studies showed that
many patients were not satisfied with the quality of
PE; they did not grasp what was happening to them,
and were beginning to ask for more information on
their illness, treatment and prognosis [3,4]. This gave
an impetus to the professionalization of patient educa-
tion. Till then, patient education was not acknowl-
edged as a separate discipline. Awareness of teaching
techniques was completely lacking. The doctor
decided without much reflection which information
patients should get about their medical condition, the
prognosis, and the most adequate treatment. At that
time, openness about serious and life-threatening
diseases (like cancer) was not the general habit.
In the wake of the turbulent days of Paris 1968
(which spread its influence throughout Europe), a
growing amount of health care professionals, policy
makers and initial patient groups began to express new
opinions on patients’ right to be fully informed about
their diseases. This required specific communication
skills, with which most health care professionals were
not familiar. At the beginning of the 70s, the first
courses in communication skills were developed
within medical faculties [3]. Around the same time
the first experiments with patient education were
launched and the first educational materials developed
[5].
3. Early issues and solutions
Early topics in patient education were: (1) the
organization of PE, institutional policy on the devel-
opment of leaflets, and videos; (2) the ‘‘orchestration’’
(tuning of patient education among different disci-
plines); (3) the role of the social environment, the
presence of family-members, especially in the treat-
ment of children; (4) individual competence (e.g. in
having bad-news conversations); (5) coping with cer-
tain patient categories (aggressive or impertinent
patients; older patients; gender issues).
The typical Dutch solution was the introduction in
hospitals of a special coordinator for patient educa-
tion, who was responsible for the organization of PE,
the development of new materials, and the enhance-
ment of the skills and motivation of the health care
professionals [6]. Moreover, in most hospitals specia-
lized nurses and patient educators were recruited as
focal persons at the admission departments. Much
effort was given to the development of new patient-
oriented educational materials. These were in most
cases organizational and technological solutions. The
coordination within hospitals got strong priority.
There was not much exchange of expertize and experi-
ences between the projects: ‘‘all flowers were allowed
to blossom’’ [7]. Dissemination of knowledge to other
health care professionals, like general practitioners
was slow, although patient education became part of
the formal task-profile of general practitioners, and in
its slipstream of the GP-curriculum in the mid-80s [8].
Several developments stimulated the exchange of
experiences in PE: the Dutch Society for Patients was
founded and — right from the start — put ‘the need for
information’ high on its agenda. As support for the
health care professionals, the National Center for
Health Promotion was founded to coordinated pro-
jects and provide information on PE. Also the start of
Faculties of Health Education, with a curriculum in
patient education was an important condition in the
early development of PE. Since the late 80s, PE is
incorporated in the curriculum of most allied health
professionals: GP’s [9]; dentists [10]; hospital doctors
[11] and nurses [12]. In the meantime, the Ministry of
Health showed its interest in patient education by
financing local initiatives, stimulating PE-efforts in
public health, and by supporting general and catego-
rical patient organizations. At the national level,
patient education got a firm position in several policy
papers aimed at the strengthening of patients’ position
in health care. After the Structuurnota Gezondheids-
zorg (1974) which was the first to mention patients’
rights in health care, several white papers on ‘‘patient
policy’’ were published (1981, 1983, 1988 and 1989).
By the end of the 80s, patient education was firmly
placed on the agenda. PE became a factor in the
market of health care [13].
16 J.M. Bensing et al. / Patient Education and Counseling 44 (2001) 15–22

4. The implementation of PE in health care
4.1. Legal aspects of PE
In the late 80s and the 90s, the position of PE in the
health care system was further formalized. In the
white ‘‘paper on quality of care’’ (1990), much atten-
tion was given to patients’ influence on health care in
general. Along with patients’ ‘‘right-to-speak’’ (reg-
ulating patients democratic rights and handling of
formal complaints in health care), patients ‘‘right-
to-know’’ was formulated and supported by the devel-
opment of patient-information systems and a series of
so-called ‘‘patient laws’’. For PE, the most far-reach-
ing law was the ‘‘act on the medical treatment agree-
ment’’ (WGBO), that came into effect in 1995. In this
law, patients’ right is established to receive all infor-
mation that is necessary to give an ‘‘informed con-
sent’’ on all diagnostic, therapeutic and research
procedures. As a result of this law, a flood of stan-
dardized educational materials were developed for the
most common diseases and medical interventions. All
hospitals and every general practice now has display
cases with numerous leaflets in its waiting room; often
accompanied by running videos and other informa-
tional gadgets.
A second major impulse has been the introduction
of legislation on quality systems in health care orga-
nizations. Under this law health care organizations
were obliged to involve patients in their systems of
quality assurance. Specific criteria were elaborated by
patient organizations, among which ‘information giv-
ing’ took a prominent place in most occasions. While
patients are in general very satisfied with the quality of
delivered care, lack of adequate information is one of
the most common complaints in systematic patient
satisfaction surveys. This made the management of
health care organizations very much aware of the need
to professionalize PE and relate it to customer invol-
vement.
4.2. National support
In Dutch policy, health care providers themselves
are supposed to take responsibility for patient educa-
tion, while the government adopts a supporting policy
towards the implementation of PE. Largely financed
by the Ministry of Health, the Netherlands Institute for
Health Promotion and Education (NIGZ) was
assigned to support all kinds of patient education
activities. The institute published a journal and a series
of books on PE for several target groups, for instance:
nurses in hospitals and in home care; pharmacists;
allied professionals; psychiatrists; professionals in
urgent care; diabetic; surgical and cancer patients [14].
Furthermore, the NIGZ got a formal task in sup-
porting and coordinating research projects in hospitals
and primary health care. A handbook on the role and
responsibilities of the PE coordinator was produced
that helped to integrate patient education in hospital
care. Also a book on the state of the art of health
promotion and patient education has been published
[15].
4.3. General practice
Consistent with the distribution of responsibilities
in the Dutch health care system, all kind of PE
activities were initiated by professional organizations.
The Netherlands Academy of General Practitioners
(NHG), who is responsible for the development of the
so-called ‘‘standards on good quality of care’’ in
general practice, has developed the habit of devoting
a paragraph on PE in each new standard that is
published. In this PE paragraph, guidelines are pre-
sented about how patients should be informed about
the etiology and the prognosis of their illness, and
about the most adequate treatment [16]. Advises about
lifestyle and coping with illness are also often incor-
porated. In this way, PE has become a regular part of
GP-care [3]. At present, a selection of PE material for
inclusion in the GP desktop computer is prepared.
Even personalized print-outs can be provided.
4.4. Nurses
Nurses often were a stimulating factor in the devel-
opment of PE, because nurses are daily confronted
with the information needs of patients. Some nurses
took the initiative to develop patient activities in
hospitals. Also specialized nurses extended their role
in PE. Good examples are diabetes nurses and psy-
chosocial cancer nurses. Several studies confirmed
their beneficial role for patients. Nurses are able to
fulfill an important role in PE; the threshold in the
communication with patients is low [12].
J.M. Bensing et al. / Patient Education and Counseling 44 (2001) 15–22 17

4.5. Dentists
Dentistry was rather early in adopting education in
their package [10]. Mainly the tasks were delegated to
dental hygienists who applied teaching interventions
both in treatment and in public programmes. The
‘‘ivory cross’’ acted as a source of educational mate-
rial and was in collaboration with universities instru-
mental in evaluation and feedback. For anxious
patients special programs for counseling and educa-
tion were developed.
4.6. Physiotherapists
More recently, physiotherapists recognized the rele-
vance of PE. The trigger was given by the disappoint-
ing results from MTA-research on physiotherapy. The
evidence-base of applied treatments was rather mea-
gre in most research projects. But many professionals
in the field argued, that this was due to the low
compliance of their patients. As home-exercising is
an important element in this type of treatment, it is
very important that patients know and understand
what they have to do, and get the motivation to sustain
these exercises. At this point, PE comes as an impor-
tant factor [17].
4.7. Pharmacies
At the same time, PE was acknowledged as a
relevant task in pharmacies. In 1994, the Royal Neth-
erlands Association of Pharmacists (KNMP) estab-
lished a working party on communication in the
pharmacy. This was part of a general tendency to
change the role-profile of the pharmacist from a
deliverer of medicines into a health care provider
who is responsible for information and advice. The
NIGZ has developed a self-diagnostic instrument with
which pharmacists can assess themselves on these
educational tasks. As in other health care organizations,
the link with quality systems is used as a stimulant.
4.8. Health insurance
Health insurance organizations (Dutch sickfunds)
became a strong regulating factor in the health care by
means of controlling the budgets. This was leading to
a growing interest in factors influencing the use of
health care. PE is applied to influence the adequate use
of health care provisions and the awareness of costs.
Also attention has been paid to primary health pre-
vention by means of a national magazine. Further-
more, research projects on the role of PE in the
application of new technologies like CD-ROMs have
been financially supported by health insurance orga-
nizations.
4.9. Patient organizations
However, the strongest impetus for the systematic
implementation of PE in the Dutch health care system
has undoubtly come from general and categorical
patient organizations. Since the so-called ‘‘Leidschen-
damconferenties’’ (a series of conferences in which all
Dutch policy makers in health care made agreements
about the implementation of quality systems in health
care), patient organizations have been looked upon as
the third relevant actor (besides health care providers
and health insurance companies). Empowered and
financially supported by the national government,
patient organizations are developing growing influ-
ence. One of the main activities of these patient
organizations is providing information to their mem-
bers. Much information, advice and support is also
exchanged in self-care groups. This is partly informa-
tion that stems from own experiences (the term
‘‘experience-expert’’ has been given to the typical
advice-role of fellow-patients), but the more advanced
patient organizations also provide medical informa-
tion from medical sources. Some even employ med-
ical doctors for that purpose. It is remarkable that how
well these patient organizations are in the use of new
media, like Internet. The national government sup-
ports a national platform for patient organizations,
including a journal and regional offices for patient
complaints. A special group are the categorical patient
organizations that are backed up by strong national
organizations, e.g. Heart or CARA Foundation. They
combine roles of linking persons, fund raising and
local advocates.
5. Problems to solve
The pioneering days of PE are definitely over. PE is
now acknowledged as an essential part of health care.
18 J.M. Bensing et al. / Patient Education and Counseling 44 (2001) 15–22

The overall change in morbidity from acute to chronic
diseases, which all ask for changes in lifestyle and a
lifelong adjustment to illness (including the intake of
medicine and the necessity of exercising) has made
clear that doctors can and should not any longer take
the responsibility for patients’ health alone. Patient
rights (embedded in legislature) go hand in hand with
the view that patients themselves must take respon-
sibility for their health. As a consequence, health care
providers have an important role in informing and
advising patients on the most adequate way to main-
tain the best health possible. Patient education is the
tool to reach these relatively new aims in health care.
However, these developments do not mean that every-
thing is clear, nor that all PE is a success. There are
still many problems to solve.
5.1. Effective use of information material
We have learned quite well to develop all kind of
informational material, like leaflets, videos, self-care
books, etc. but in effect studies, the results of this type
of PE are often a bit disappointing. One of the reasons
might be that too much is expected from a too simple
intervention. Another reason is that this information is
not tuned to the individual circumstances, preferences
and needs of the patients to whom it is directed.
Slowly a differentiation of materials to fit to stages
in the patients career is being applied. Patients can be
very different in their informational needs. In order to
reach the educational aims, information material
should be better tuned to patients’ characteristics.
One way of doing this is to provide information in
a face-to-face consultation in which the needs, pre-
ferences and individual wishes can be established in a
two-sided way of communication. Health care provi-
ders should be aware of the fact that educational
material may support patient education, but can never
replace it. Taking home audio- or videotaped consul-
tations may strengthen the individualized education.
Another way to individualize the information can be
based on patients’ risk profiles and other character-
istics. In this way, one can provide very efficient,
Taylor-made information. This is successfully applied
in The Netherlands in a campaign on anti-smoking
and fat intake, in which the target groups were pro-
vided with individualized educational letters. These
examples of public health activities may be applied to
patient education in hospitals (e.g. tuning the informa-
tion at the age of patients, their condition, and received
therapy). In general, new technology like hyperlinks is
seen to be able to adapt education more closely to the
users need.
5.2. Need for counseling
Another problem in PE is that it is never performed
in a neutral situation. Health problems are often laden
with emotions. From psychology, it is known that
emotions block the reception and retention of relevant
information. The shock of a bad-news message, but
also the relief when nothing serious has been found,
both result in an emotional status that prevents the
patient from hearing what the doctors tell them
(regardless the effort doctors take to provide techni-
cally correct and patient-oriented information).
Patients mention this issue as one of the main com-
munication problems in health care: doctors are giving
them all kind of medical-technical information, while
they are still in need of emotional support and under-
standing. As George Engel (the American founder of
the biopsychosocial model in medicine) once poeti-
cally said: ‘‘patients always have a double need: the
need to know and understand, but also, and perhaps
even more important: the need to feel known and
understood’’. Patient education is often one-side
directed to this first need of the patient (the cognitive
need), thereby neglecting the second need (which is an
emotional need). When PE misses its aim, it is often
by this universal phenomenon. The need for more
attention to counseling in patient education strongly
applies to the chronically ill patients.
5.3. Coordination of care
A third problem has to do with role division and
organization of PE within health care. Chronic
patients have to cope with a lot of health care provi-
ders: GPs, medical specialists, nurses, physiothera-
pists, pharmacists, dieticians, and sometimes also
psychosocial health care providers. Continuity of care
has become a serious problem in health care and
continuity of education is still neglected. PE is often
limited by so called ‘‘boundary fights’’: who is respon-
sible for which part of the education? Blaming others
is sometimes an easy way out for a complicated task
J.M. Bensing et al. / Patient Education and Counseling 44 (2001) 15–22 19

like PE. However, PE is very important in the con-
tinuity and the integrating of the health care. PE is not
only necessary due the growing fragmentation of the
care, but is also a crucial condition in the follow-up of
treatments.
5.4. New challenges
Earlier, we noted that emancipatory processed
shifted the power balance between patients and pro-
fessionals. Patients tend to see themselves at least
co-responsible for their health. Development of gene-
technology may again shift this picture. Chances and
risks for health are determined also by luck or acci-
dent. How will people be able to respond to this type of
information. Will professionals be able to maintain in
their PE a balance between the blind forces of nature
and personal responses to the challenges. Especially,
the counseling of young couples considering parent-
hood may develop into a sensitive area where issues of
risk-management and ethics meet [18].
5.5. Capacity restraints
Education is a process with two parties involved. In
the early stages, brochures were often seen to replace
the personal exchange and to be a more cost-efficient
way to handle the ‘‘information giving’’. Now, the
focus has changed to real education and to both patient
behavior and satisfaction as outcomes. Now ‘‘infor-
mation-exchange’’ and learning requires more of the
time of professionals. However, this insight occurs at a
time where time constraints are evident, both because
of cost-control operations and a general labor shortage
in health care. In a context where waiting lists and a
shortage of adequate staff is common, the capacity to
apply state-of-the-art patient education may be threa-
tened. Common is the trend to try to delegate these
tasks. GP’s often put the responsibility on their assis-
tants, medical specialists on hospital nurses, without
providing adequate educational training. At the same
time, professionals tend to forget that things said in a
hurry without adequate educational care, may have an
adverse impact on the patient that cannot be corrected
by delegated tasks. Social changes have been said to
be more difficult then surgery, but this notion is not yet
being reflected in the allocation of resources in health
care.
5.6. The influence of the media
The last, but not the least issue that deserves
attention is the influence of the media. Newspapers,
magazines, radio and television pay a lot of attention
to health care issues. Many times this is done in a very
professional and adequate way. However, there are
also examples of the influence of pharmaceutical
industry on the content of the programs and articles.
For instance, when a new type of drug is plugged, or a
new, very expensive and still experimental surgery is
demonstrated. In a broader sense, these public infor-
mational sources provide the patient with all kind of
information that can counteract the doctors’ policy. In
The Netherlands, GPs have the explicit philosophy to
be parsimonious in their medical interventions. This
professional attitude has not only to do with costs, but
also and especially with the potential harms of super-
fluous interventions (side-effects of medicines, sur-
gery-risks, hospital infections, antibiotic-resistance).
While the media influence can be regarded as a way of
empowerment to the patient, the risk is that the doctor
gets stuck between the patient and the media. PE then
becomes a negotiating process, for which the doctor
often is not well equipped.
Help desks that can be approached by telephone
very often are well checked: they use professional
consultants to control the quality of the information
provided. Internet takes a special position in this issue,
because it is an opportunity as well as a danger in PE.
It is an opportunity, because it makes all kind of
medical information directly accessible to patients
who want to know more. But is also a danger, because
there is no quality control on the contents of this
information. There is certainly a need for quality
controlling ‘‘editors’’ on the Internet, or for certain
types of formally acknowledged ‘‘quality hallmark’’
for which information providers may apply. Another
approach is that the owner of the website is
perceived to have a trustworthy status. The ‘‘net
doctor’’ on behalf of the Royal Dutch Medical
Society developed by the NIGZ shows this. In 4
months, it was visited 1 000 000 times. The wide
availability of video has enhanced training for patient
education. The NIGZ has produced a package ‘‘video
on the job’’ to help professionals to analyze their
patient interactions and improve their educational
interventions.
20 J.M. Bensing et al. / Patient Education and Counseling 44 (2001) 15–22

6. Conclusion: future policy topics
In comparison with other European countries, the
Dutch patient education reached a high quality due to
a close cooperation between the national government,
patient organizations and applied research projects in
hospitals and primary health care. However, there are
several topics in Dutch PE that still needs further
attention in the health care policy.
1. The need for Taylor-made information for patients
(personal informational letters, feedback by tapes,
use of hyperlinked text and pictures).
2. The need for two-sided communication, in which
there is also room for the emotional aspects of the
problems of the patients; counseling in health care
seems to be a new focus in PE.
3. The need for clear role definitions and agreement
about which health care providers are responsible
for which type of information, including the
prevention of ‘‘boundary fights’’ and the stimulat-
ing role of continuous PE in continuity of care.
4. The empowerment of patient organizations in PE
in national health care policy as well as local
health care organizations.
5. The need for quality control on PE-issues espe-
cially, at the Internet and in other public media.
6. Training in communication skills is a very small
part of the medical curriculum as well the
education of other professional groups.
7. The need for theoretical and empirical under-
pinning of the educational models in relationship
to the aims of PE, like the processes teaching and
counseling. The process of recall and retention,
the enhancing compliance, the strengthening of
self-regulation, the impact on quality of life.
8. PE has been developed for several specific patient
groups (e.g. diabetes, cancer, rheumatism, heart
and cardiovascular disease, asthma); their is a
need to compare the effects of these strategies in
order to increase the effectiveness and to profit
from the common experiences.
9. At the start, PE was developed to reduce length of
stay in hospitals; now the length of stay reduces
the possibilities of PE; more expertise is necessary
with PE in polyclinics and day care. Again
continuity of education and adequate capacity
are a major concern.
10. Finally, it is becoming more obvious that educa-
tional effort have their limits. A combination
with structural interventions to remove barriers is
necessary, but requires to be comprehensive. In a
context where waiting lists and a shortage of
adequate staff is common, the capacity to apply
patient education in keeping with the developing
standards may be threatened. Common is the
trend to try to delegate these tasks. GP’s often
put the responsibility on their assistants without
providing adequate educational training. At the
same time, professionals tend to forget that on
the public things said in a hurry without adequate
educational care, may have an adverse impact
that cannot be corrected by the delegated tasks.
Social changes have been said to be more
difficult then surgery, but this notion is not yet
being reflected in the allocation of resources stra-
tegies like healthy hospitals and healthy cities.
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