implications of structural deficits for patient education in germany

Implications of structural deficits for patienteducation in Germany

Stefan Keller*, Heinz-Dieter BaslerInstitute for Medical Psychology, Philipps University, Marburg, Germany

Received 10 May 2000; received in revised form 5 September 2000; accepted 12 November 2000

Abstract

Several changes in health politics and legal settings in recent years have affected the structure and practice of health

promotion and patient education in Germany. The current legal background and its implications for patient education are

discussed. Based on examples from four selected areas (cardiovascular diseases, diabetes mellitus, chronic pain, and asthma)

the current practice of patient education in Germany is summarized. While many well-structured programs exist that are based

on state-of-the-art guidelines, there is a lack of high quality research that documents the long-term effectiveness and cost-

effectiveness of such approaches. Structural problems and an insufficient number of highly trained personnel result in the fact

that many patients do not have access to standardized programs. Persisting compliance problems indicate that there is still

room for improvement of patient education interventions. As important for the future, necessary changes in the legal settings

and possible implications for the education of the educators are discussed. # 2001 Elsevier Science Ireland Ltd. All rights

reserved.

Keywords: Patient education; Health promotion; Review; Germany

1. Introduction

In times of increasing prevalence of chronic dis-

eases it becomes increasingly important to provide

patients with access to interventions that help them

maintain or improve their quality of life. Effective

patient education approaches acknowledge the speci-

fic needs of sufferers from certain diseases, provide

patients with essential information and skills, enhance

patients’ motivation and adherence, and support the

process of implementing and maintaining necessary

changes in patients’ lifestyle. The availability and

accessibility of patient education programs as well

as their effectiveness are strongly depending on the

structures of the respective health care system they are

part of. This paper characterizes the current situation

of patient education in Germany, based on examples

from highly prevalent disease areas. Special attention

is given to the structure and the legal background of

the German health care system.

2. The legal setting

Health education and health promotion in Germany

suffered severely from several changes in legislation

during recent years. Attempts to control increasing

expenditures in the health care system have lead to

Patient Education and Counseling 44 (2001) 35–41

* Corresponding author. Tel.: þ49-6421-286-3774;

fax: þ49-6421-286-4881.

E-mail address: [email protected] (S. Keller).

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 1 0 0 - 8

budget cuts and structural changes for health

education (an overview over the German health care

system and recent changes are presented by the Eur-

opean Observatory on Health Care System [1]).

Before 1997, health insurance companies were free

to spend up to 5% of the budget for preventive

purposes and health education. This legal framework

encouraged a great variety of activities and resulted in

a diversification of initiatives. Insurance companies

offered a broad spectrum of health promotion pro-

grams to their members free of charge or for a minimal

fee. Very often, however, the decisions on what to

offer were rather made by individual managers in

these companies than by health promotion experts.

Stronger competition among health insurance

companies in Germany also resulted in the phenom-

enon that health education was not only used as a

way to improve the quality of care for the insured.

More and more, preventive services aiming at young

people with a low risk of illness were used as market-

ing tools to attract new members. Although some

efforts were made to control the quality of some of

the offered programs, the insurance companies sub-

sidized many activities merely because they were

believed to provide a good basis for competition.

For example, skating or dancing courses financed

by sickness funds have come to be known as con-

troversial topics that discredited the idea of health

education in the eyes of many health care providers

and the public.

As a reaction, after the health reform of 1997

sickness funds were no longer allowed to spend

insurance money for preventative purposes and for

the health education of the insured. Unfortunately, this

reform did not only cut off the proliferation of inade-

quate activities but also resulted in the cessation of all

those measures that had followed a high scientific

standard in terms of quality assurance and good

clinical practice. Consequently, the respective depart-

ments of the health insurance companies were dis-

solved, which not only meant a drawback for the

dissemination of preventative knowledge, but also

resulted in unemployment for many educational

experts.

This situation affected not only the services offered

by the insurance companies but also preventative

activities at the work site. Many companies had

offered evaluated programs to maintain or improve

their employees’ health (like programs for smoking

cessation, dietary change, stress management, physi-

cal activity or a back school training for the prevention

or complementary treatment of back pain). The with-

drawal of the sickness funds from financially support-

ing these programs resulted in higher fees for the

participating individuals which the majority was not

able or not willing to pay. During the following

months, the existing infra-structure for health educa-

tion in industrial companies broke down and did not

recover to the very day.

As a consequence of the health reform, sickness

funds only supported health education that was pro-

vided by physicians in their own private practices. In

doing so, they followed recommendations passed by

the conference of the health ministers of Germany in

1999 claiming that ‘‘every patient has the right to

expect from his or her physician enlightenment and

counseling in a manner that is comprehensible, infor-

mative, and adequate’’. This pertains especially to

behavioral changes. ‘‘The physician is obliged to

inform the patient, which behavior is desirable, in

order to assure a positive result of the treatment and to

avert possible damage’’ [2]. In spite of these objec-

tives, the fee that physicians can redeem for the

service, is very low and not attractive at all compared

with the fee for non-verbal, rather technical activities.

There are no data about which percentage of the

patients really take advantage of educational efforts

that meet the state of the art under these circum-

stances. Our own data [3] show, however, that these

approaches are not very effective in a group of patients

with cardiovascular risk factors. Standard behavioral

counseling did not lead to an improvement in relevant

physiological parameters (blood pressure, cholesterol

etc.) or behavioral parameters (diet quality, exercise

frequency, etc.). Attempts to improve physicians’

counseling effectiveness with minimal training inter-

ventions failed.

While most of these structural changes mentioned

above affected programs for health promotion and

primary or secondary prevention, the overall climate

also reflected on structured education approaches for

patients with chronic diseases. Only in selected areas,

the existing structures allowed a systematic approach

which was financially supported and which relied on

programs that were evaluated as far as process and

outcome quality are concerned.

36 S. Keller, H.-D. Basler / Patient Education and Counseling 44 (2001) 35–41

3. Selected patient education activities

Overall, patient education in Germany is still closer

connected to inpatient than to outpatient treatment.

Especially rehabilitation units for patients after acute

events (like cardiovascular events or related surgery,

spine surgery, severe asthma conditions, etc.) have

established patient education as a routine part of their

treatment. Currently, approximately 1400 hospitals

for rehabilitation and (mostly tertiary) prevention

exist in Germany; about two-thirds of them are for-

profit organizations (as opposed to regular hospitals

which mostly have public or private non-profit own-

ership) [1]. Treatment in these hospitals is almost

completely covered by the German health care system

which is unique worldwide. Recent changes in legis-

lation introduced a small compulsory financial con-

tribution of the patient (12 Euro per work day spent in

the hospital). In addition, for every week spent in a

rehabilitation hospital the patient has to waive 2 days

of his vacation.

Presently, the standard procedure for most of the

conditions mentioned above is a 3 week inpatient

treatment in a specialized rehabilitation hospital. Phy-

sical and psychological recovery, the initiation of

changes of risk behavior, and, in younger patients,

the reintegration into the work process are the major

goals of these treatments. Usually, disease-specific

interventions and general health education are com-

bined. The spectrum of specific interventions is broad

and there is little standardization of interventions

across disease areas or rehabilitation units. While it

is beyond the scope of this paper to give a detailed

description of the intervention characteristics in these

rehabilitation units, the following section provides a

summary of the current status of interventions in those

areas where patient education is most established as a

part of routine treatment.

3.1. Cardiovascular diseases

Cardiovascular diseases are still the leading cause

of death in Germany, with 43.5% in men and 52.9% in

women in 1995 [4]. Next to muscelo-sceletal pro-

blems, cardiovascular problems are the second most

important reason for admission to rehabilitation

hospitals. Most of these specialized hospitals offer

group education programs which are conducted by

interdisciplinary teams and which focus on several

risk behaviors (high-fat diet, smoking, lack of exer-

cise, etc.). While several standardized programs have

been developed [5], in many cases the interventions

are composed depending on the patients’ individual

needs and the facilities of the institution. Patient

education about the mentioned risk factors seems

essential because of their high prevalence. In 1991,

in the age group of 25–69 years almost 40% of all men

and 29% of all women smoked cigarettes, 36% had a

total cholesterol > 250 mg/dl, and 88% of men and

52% of women had a body mass index > 25 kg/m2

[4].

There is, however, no standard patient education

approach and very little coordination between hospi-

tals. Although this practice has been in place for

decades, little is known about the long-term effects

of these condensed short-term interventions. Quality

control on a large scale has only recently been intro-

duced on the background of dramatically increasing

costs in the German health care system. So far, quality

assessment has mostly concentrated on structure and

process quality. The lack of a standardized follow-up

treatment and of structures to guide long-term beha-

vior change in an outpatient setting lead to the

assumption that the long-term effects on health para-

meters may not be favorable. On the background of

the high financial input that these institutions require,

this system is more and more questioned. The sug-

gested length of stay has already been reduced from a

standard of six to a standard of three weeks; if con-

trolled studies fail to document the long-term effec-

tiveness, it can be expected that this form of treatment

will become more and more difficult to justify.

A possible alternative could be outpatient treatment

centers. Unfortunately, only few institutions exist that

provide structured patient education for this group of

patients in an outpatient setting. Recently, fitness

studios with medical services and outpatient rehabi-

litation centers have discovered this field and have

started providing these services. It remains to be seen,

whether they can show a sufficient effectiveness of

their interventions for risk behavior change and a

better efficiency. Some of these centers have estab-

lished quality control mechanisms and the first results

are promising. However, many issues, like the finan-

cial coverage by the different levels of the German

health care system, are not finally resolved yet.

S. Keller, H.-D. Basler / Patient Education and Counseling 44 (2001) 35–41 37

3.2. Diabetes mellitus

Diabetes mellitus is with 4.6% a highly prevalent

condition in Germany. Most of these 3.7 Million

individuals (93–95%) fall into the diabetes type-II

category [4]. In Germany, diabetes mellitus is the

area with the best established structures for patient

education. Since the early 1980s, patient education has

been accepted as a standard part of treatment. In 1991,

the Deutsche Diabetes Gesellschaft (DDG, German

Diabetes Society) has established guidelines for struc-

ture quality of intervention sites which have since

been complemented by guidelines for process and

outcome quality. Several professional groups can

get certified through the DDG after intensive continu-

ing education; physicians, for example, can acquire

the title diabetologist, nurses and nutritionists can

qualify themselves as diabetes counselors. In 1994,

261 centers for patient education were registered (245

in hospitals, 16 in physicians’ practices) [4]. Recently,

general and specialized hospitals have started net-

working in order to standardize their efforts and to

ensure a high standard for treatment quality [6].

Especially in hospitals an interdisciplinary approach

can be taken; specialists like physicians, nurses, nutri-

tionists, psychologists, exercise specialists, specialized

cooks, and others can collaborate in the interest of the

patients. Several structured education programs have

been introduced for these settings, some of which have

also been evaluated [7]. It could also be shown that

these approaches can be successfully implemented in

general internal medicine departments [8]. These

structured programs mostly combine information,

behavior change strategies, and self-management stra-

tegies, and they are fairly intensive. For type-I dia-

betics, for example, a frequently applied standardized

5 day inpatient treatment allows controlling for phy-

siological parameters and an intensive training of the

necessary skills for this patient group [9,10].

Recently, the implementation of ‘focus practices’

has begun in order to improve guidance and education

for patients in an outpatient setting. These practices

specialize in the treatment of diabetic patients and

provide the necessary structure quality and specialized

personnel for this purpose. In most cases, however,

diabetic patients are in the care of their general

practitioners. While the model suggests that general

practitioners should collaborate with specialists and

education centers, it is obvious that the number of

education centers is far to small to allow access for all

diabetic patients. As an important step toward a better

care, a short education program for type II diabetics

had been introduced [11]. This short program is

designed to be implemented in the offices of specially

trained physicians. Most importantly, this program has

been integrated into standard medical care and is fully

covered by the German health insurance companies.

Thus, it represents one of the very few patient educa-

tion programs in an outpatient setting that have estab-

lished themselves as a routine part of treatment. The

program consists of four 90–120 min meetings which

cover relevant topics like information about diabetes,

glucose lowering strategies, diet, foot care, physical

activity, etc. While this program is certainly a step in

the right direction, it is obvious that complex beha-

viors like diet or physical activity can hardly be

influenced through such a short intervention. It could

also be shown that the long-term effects (1 year

follow-up) of this approach are less pronounced than

those of a structured, self-management program which

is based on behavioral medicine [12].

To summarize the situation in Germany for patients

education of diabetic patients: Too many patients do

not receive a sufficiently comprehensive standardized

education program for managing their diabetes or they

receive it so late that they already suffer from diabetes

complications that could have been prevented.

Although important steps have been taken with estab-

lishing short patient education interventions as a

routine part of outpatient treatment, more specialists

are needed. The Deutsche Diabetes Gesellschaft and

other professional organizations provide valuable

guidelines and continuing education in order to

increase the number and the qualification of diabetes

specialists. However, even in patients who had access

to patient education programs, non-adherence remains

a problem. This indicates that a further improvement

of existing patient education programs for diabetes, a

better networking between specialists and general

practitioners, and better structures for long-term gui-

dance are still a challenge for the future.

3.3. Chronic pain

About 15 years ago, the German Minister of Health

orderedanexpertiseabout thesituationofpain treatment


in Germany [13]. The investigation was triggered by

the increasing costs for the treatment and rehabilita-

tion of chronic pain patients with a focus on musculo-

skeletal problems. With 50% of all reported pain, back

pain is the most common pain disorder. Prevalence

rates of 80% over a lifetime and point prevalence rates

of 35% are reported by German investigators [14].

Back pain is responsible for more than 15% of all days

lost at work and for one-third of all in-patient reha-

bilitation efforts [15,16]. Every second visit at the

office of an orthopedic surgeon and every fourth visit

at the office of a family physician is due to a back

problem [17].

The expertise came to the conclusion that the

prevention and treatment of chronic pain conditions

was a much neglected topic and that increased efforts

should be undertaken to stimulate interdisciplinary

clinical research about pain. As a result of the sub-

sequent investigations patient education programs

have become available that aim at an active participa-

tion of the subject in order to prevent both the physical

and social consequences and the high financial costs of

a chronic pain condition. There is clear evidence of the

beneficial effects achieved by an educational program

that is administered in addition to conservative med-

ical treatment in German pain centers [18]. The

program takes into account that chronic pain is not

simply a neurophysiological state, but a multifaceted

phenomenon with both physical and psychological

aspects that emerge during the process of chronicity

[19]. It underlines the effects of information-proces-

sing both on pain experience and behavioral change

for preventative purposes. Educating patients and

changing the belief system is often a prerequisite

for a more active and less restricted life. In addition,

operant conditioning techniques are incorporated that

aim at a decrease in the frequency of pain behaviors

and an increase in the frequency of well behaviors. A

third feature focuses on the vicious circle of stress and

muscular tension. According to this concept, predis-

posed subjects display a specific pattern of muscular

spasm when exposed to significant stressors. As a

consequence, relaxation methods are incorporated

into the treatment. Using relaxation as a coping skill

in real life situations helps patients identify and

enhance some of their methods of dealing with pain.

Finally, the impact of biomechanical stress on the

emergence of back pain is addressed by introducing an

adequate training of body posture while performing

activities of daily living [20,21].

At present, this program is widely used in outpatient

as well as in rehabilitation units as part of a multi-

disciplinary approach. Two different versions are avail-

able: the first version places emphasis on educational

approaches and comprises seven sessions [22], whereas

a second version consists of 12 sessions and, in addi-

tion, includes cognitive-behavioral approaches [23].

3.4. Asthma

In addition to the areas mentioned above patient

education programs have been well established for

patients with asthma. Similar to the situation in dia-

betes treatment, considerable efforts have been made

to develop standardized programs for adults as well as

for children and their families [24,25]. One example is

the ABUS program that was developed at the Uni-

versity of Duesseldorf. This Program is comparable to

the 5-day inpatient program for patients with type-I

diabetes (see Section 3.2). Studies could show the

effectiveness and cost-effectiveness of such

approaches [26].

Again, the main focus is on inpatient treatment but

recently programs for patient education in an out-

patient setting have been developed. Most of these

approaches follow national and international guide-

lines and use a cognitive-behavioral approach in order

to improve patients’ knowledge, risk behavior, asthma

management competence, and overall treatment

adherence. Unfortunately, there is only very limited

research in the form of prospective, randomized, and

controlled studies that provide an evaluation of the

long-term effects of these approaches.

Overall, the Federal Health Report for Germany

states that asthma patients are insufficiently diagnosed

and too often not treated correctly [4]. Of those who

receive treatment, not everybody will participate in a

patient education program. The persisting compliance

problems of asthma patients [27] indicate that there is

room for improvement in patient education for asthma

patients in Germany.

4. Future perspectives

After the federal elections in 1998, the new coali-

tion of Social Democrats and Ecologists initiated a


reform of the statutory health insurance system which

re-established some of the conditions that were ter-

minated in 1997. After being approved by the legis-

lative bodies in the year 2000, first steps are made to

put these initiatives into practice. Aim of the new

regulations are to establish quality control systems, to

increase access to health information for consumers

and patients, to strengthen patients’ rights and to

strengthen preventive care. The regulations suggest

that only those programs for health education be

supported by the sickness funds that are thoroughly

evaluated and that meet minimum quality standards.

This refers to the domain of prevention as well as to

rehabilitation. Specifically, only those services may be

funded that ‘‘improve the general state of health and

especially contribute to a reduction of the socially

caused inequality of health opportunities’’ ([28], para-

graph 20). Moreover, sickness funds are encouraged to

participate in health education at the work site and to

financially support self help organizations. The finan-

cial frame for these activities in the year 2000 is

supposed to be 0.5 Euro per insured person. Moreover,

the initiative further suggests that every year 5 million

Euro of the entire budget be spent for the support of

institutions that offer health education and counseling

([28], paragraph 65 b). Finally, sickness funds are

encouraged to support patient education and training

for the chronically ill provided that the training has

been shown to be effective and efficacious ([28],

paragraph 43).

It is evident that a (re-) implementation of such

approaches will require well educated personnel,

structures that provide sufficient incentives for coun-

seling and patient education, and structures that ensure

the requested quality control. While the necessity of

controlling structural, procedural and outcome quality

has been recognized, it remains somewhat unclear

who will provide the necessary funds for evaluating

patient education approaches, e.g. through rando-

mized, controlled and longitudinal studies. As pointed

out earlier, there is a lack of such studies in Germany

for many fields of patient education which compli-

cates final conclusions about their effectiveness.

Another area where considerable improvements can

be made is the education of the educators: In medical

schools, selected topics about health education are

included in the training offered by medical psychol-

ogists during the pre-clinical part of the medical

education. In addition, the clinical part contains the

subject ‘‘social medicine’’, with a focus on the struc-

ture of prevention. It is very unlikely that this minimal

education enables students to actually provide state of

the art counseling for their patients in the future.

Those, who really wish to increase their knowledge

in the field may profit from participation in recently

founded training centers for public health. With regard

to the education of psychologists, many university

departments have recently introduced health psychol-

ogy into their curriculum. Moreover, the professional

organization of psychologists in Germany offers a

training course over three years for those who want

to specialize in this field. The problem remains that no

institution coordinates the efforts of the educators with

the consequence that the few existing approaches are

competing against each other instead of being inte-

grated for the best of the patient. There is no major

professional organization for health education and

counseling that facilitates exchange across behavior

areas. It remains to be seen whether a recently founded

network for scientists and practitioners in rehabilita-

tion settings may be the starting point of improve-

ments regarding the structure, procedure and outcome

of educational efforts [29].

From this analysis it becomes evident that health

promotion and patient education in Germany still

suffer from several, mostly structural, problems. In

contrast to the United States, where major profes-

sional organizations declared the ‘‘Decade of beha-

vior’’, programs for behavior change are still not

sufficiently recognized as an opportunity for disease

prevention and disease management in Germany.

Nevertheless, efforts have been made, the number

of dedicated researchers and practitioners is increas-

ing, and there is hope that the situation will improve.

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implications of structural deficits for patient education in germany

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