The management of chronic care conditions in Europe
with special reference to diabetes:
the pivotal role of Primary Care
Position Paper 2006
1
The management of chronic care conditions in Europe with special reference to diabetes: the pivotal role
of Primary Care.
2006 European Forum for Primary Care
Editors
Luk Van Eygen et al.
Printing
Sekondant
This publication may be reproduced without written prior consent of the publisher, but acknowledgement of the
European Forum for Primary Care and the editor is requested. A pdf version is available on the website of the
European Forum for Primary Care.
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2
Preface
The European Forum for Primary Care was established in 2005, with the purpose of
strengthening Primary Care in Europe. Primary Care is care that is community based,
permanently available and easily accessible. Among the many activities of the Forum is the
formulation of a series of Position Papers from 2006 onwards.
Aim of the Position Papers is to provide policymakers in WHO, EU and in the individual
European states with evidence and arguments which allow them to support and develop
Primary Care. In addition, the Position Papers aim to facilitate the exchange of experience
and know how between practitioners in different countries and to identify issues for further
research.
The Position Papers are the result of consultation and discussion among many relevant
stakeholders in Europe, under leadership of one of the members of the Forum. The format
and the process of development of the Position Papers gradually will be standardised,
resulting in a series, demonstrating the added value of Primary Care.
Position Papers
2006

Mental Health in Europe, the role and contribution of Primary Care.

Encouraging the people of Europe to practice self care: the Primary Care perspective.

The management of chronic care conditions in Europe with special reference to
diabetes: the pivotal role of Primary Care.
2007

Prevention and treatment of chronic heart failure in Primary Care

Prevention and treatment of COPD/asthma in Primary Care

Prevention treatment of chronic renal failure in Primary Care

Prevention and treatment of depression, the role of Primary Care
3
The management of chronic care conditions in Europe with special
reference to diabetes: the pivotal role of Primary Care.
Introduction
This position paper focuses on the pivotal role of primary care in chronic care conditions and
targets policymakers in the EU and its member states. We argue the need for a concerted
approach to define how chronic care programs should be designed, implemented and
evaluated to ensure the highest level of quality in chronic care delivery across the different
European healthcare systems. The case of diabetes mellitus (type 2) is used as an example.
1
A diabetes epidemic
The impact of diabetes on health in Europe can hardly be underestimated. In 2003 the
International Diabetes Federation estimated that about 48 million people in Europe suffer
from diabetes. This corresponds to a prevalence of 7.8%, which is expected to rise to 9.1%
by 2025. By 2025 the direct cost of diabetes is expected to represent between 7% and 13%
of the total health expenditure1 .
Diabetes has a dramatic impact on mortality, morbidity and quality of life. Diabetes patients
have 3- 4 times as much risk to die from cardiovascular diseases. Diabetes is still the
commonest cause of blindness at working age, one of the commonest causes of kidney
failure and the most common cause of leg amputation2. Although the quality of diabetes care
in many healthcare systems is gradually improving, this holds for a part of the patient
population only3,4,5,6. Evidence suggests there is still a wide variation in quality of care, with
rates of recommended care processes to be unacceptably low7,8,9.
2
Quality of care
Although measuring and improving quality is a strong focus in diabetes care, it is still a
concept that has left to numerous interpretations. How high quality care for diabetes is
defined, often depends on the perspective of the initiator of the program or the concept used
to classify the program such as disease or case management. Different stakeholders have
different perspectives about quality of care10 and the large number of definitions used, either
generic11,12, or disaggregated13,14,15,16 demonstrate the complexity and multidimensionality of
the concept17.
4
A good framework for what is considered high quality chronic care is provided by the Chronic
Care Model18. The author of the Chronic Care Model states that improvements in six
interrelated components (community resources, self-management support, delivery system
redesign, decision support, clinical information systems and organizational support) can
produce system reforms that enhance patient-provider interactions19,20,21. We strongly
subscribe to the Chronic Care Model and the pivotal role primary care has to play in
operationalizing its constituents.
3
A diabetes care model rooted in primary care
Several models of diabetes care are possible: a primary care-based model, a secondary
care-based model or a model of specialised diabetes centres besides routine primary and
secondary care. The epidemiological impact and the focus on patient empowerment and
efficiency plead for a diabetes care model rooted in primary care, with a pivotal role for the
general practitioner/family physician.
Diabetes is a complex disease which affects many aspects of patient’s life and requires a
long-term follow-up. Diabetes patients often suffer from several chronic problems at the
same time. Primary care operating as an interdisciplinary team is particularly well placed to
offer this care. The knowledge of the patient’s psychosocial context, previous health
experiences and co-morbidities ensure holistic, comprehensive and continuing care22.
Specialised care – be it at secondary level or in specific diabetes centres not integrated in
primary care – risks to lead to a fragmentation of care.
Clinical effectiveness and cost-utility are other important reasons to choose for a primary
care-based model. International evidence indicates that health systems based on well
structured and organised primary care with adequately trained general practitioners, provide
both more cost-effective and more clinically effective care than those with a low primary care
orientation23. The evidence for diabetes care points in the same direction24: well structured
diabetes primary care – as compared to secondary care - offers at least as good quality care
at a lower cost for the patient (though the effect on the overall health cost is less clear).
The rising diabetes prevalence represents a big challenge for the European health systems.
Ensuring the accessibility of care for all diabetes patients will be most easily achieved in
primary care. In 2006 most diabetes patients in Europe are already treated in primary care,
without capacity problems. A diabetes care focussed on secondary level is likely to create
soon long waiting lists. The saturation of the secondary level has already caused in several
countries a shift of patients from secondary to primary care25, but quality of care can only be
5
guaranteed when this shift is accompanied with a proper support and adequate ressourcing
of primary care.
4
Crucial elements for diabetes care reform
Presently most European countries are in a process of reforming the management of chronic
diseases, and more specifically of diabetes. Health systems that were originally designed to
deal with acute diseases have to be transformed into systems capable to offer integrated
care. The general principles of present thinking on diabetes care management can be
summarized as follows:
 Patients should be active and empowered partners in diabetes care
 Diabetes care should be provided by an interdisciplinary team
 Quality monitoring is a prerequisite for efficient diabetes management
 Information and communication technology are crucial to facilitate integrated
diabetes care
 Prevention and early detection of diabetes require more attention
 Patients should be active and empowered partners in diabetes care
The patient should have a pivotal role in his/her diabetes management. In chronic diseases
like diabetes, patients themselves have a strong impact on the progress of the disease.
Structured health education should be part of routine diabetes primary care. Evidence
reveals a positive effect of both individual and group-based health education on diabetes
outcome2627, 28. Individual and group-based health education are complementary strategies
which should be both promoted.
Till now many diabetes patients in Europe aren’t offered any structured health education at
all. Many training programmes exist here and there, but they are often not well validated and
cover only a part of the diabetes patients. In general there is a lack of qualified personnel to
organise health education29.
 Diabetes care should be provided by an interdisciplinary team
Taking care of a diabetes patient involves a wide range of skills: providing health education
and dietary advice, treating hyperglycaemia and other cardiovascular risk factors, examining
and treating eye and foot problems, organising the prevention of long-term complications,
6
etc. It is clear this can only be achieved when several disciplines are involved. General
practitioners, nurses, health educators, dieticians, podotherapists, ophthalmologists and
diabetologists should be involved in this team work.
An interdisciplinary team can be a group of health professionals working in the same
organisation but more often it is a network of professionals working together and sharing the
care protocol.
We specifically plead for an enhanced role of the nurse. While titles, qualifications and
functions of nurses differ from one country to another, we can roughly discern two profiles26:

Nurses with a limited postgraduate training in diabetes care, usually working in
general practice. Diabetes care is only one part of their activities. They support the
physicians by taking over part of their tasks e.g. in health education and clinical
follow-up.

Nurses with a more extensive postgraduate training (“diabetes specialist nurses”).
They usually work in secondary care, but get more and more involved in primary care
as well. Their functions vary greatly, from only health education to clinical follow-up,
case management, training of health staff, liaising between primary and secondary,
etc. In primary care they usually work at a local level as an external support and
resource-center for the primary care team.
An enhanced role of the nurse is supported by evidence. Interventions in which, among
others, nurses take over some tasks of physicians, resulted in better glycaemic control26,30,31.
There are two main reasons to involve nurses in diabetes primary care: quality improvement
and the need for subsidiarity. Quality improvement will only be achieved when the nurse can
add something to the existing care package i.e. when the introduction of the nurse results in
more time spent on follow-up, education, case finding etc. Mere substitution of general
practitioners by nurses might lead to equal results under study circumstances, but the
question remains if this will be the case in daily practice. The general practitioner should
continue to play a pivotal role. In line with the skills, the general practitioner is the person to
integrate all input from the team members and information about co-morbidity and
psychosocial context into one global approval. The general practitioner ensures the
comprehensiveness of diabetes care. See also box 1.
An interdisciplinary approach of diabetes primary care is a real challenge, as primary care
health workers often work in relative isolation. Shared care protocols have been developed
and define the roles and the ways of communication, but their implementation is often
problematic. Strategies should be developed to facilitate the implementation. Supportive or
repressive measures at national level can be helpful. A more active involvement of local
7
structures that involve both primary and secondary care, is an option to consider. At a local
level health workers meet, build personal relationships and have the opportunity to develop
shared care protocols in a bottom-up approach. When properly financed, local structures can
play an important role in supporting and co-ordinating this process.
Another barrier to interdisciplinary diabetes care is the poor coverage of health education,
dietetic and podologic advice by health insurances. Not all type 2 diabetes patients need
equal contributions from these services, but a consensus should be developed to tailor the
package of services to each type of patient.
Finally, legislation should ensure an adequate legal basis for the function-profile of each
team member. More specifically nurses are often restricted by law to take up certain
responsibilities in diabetes care.
 Quality monitoring is a prerequisite for efficient diabetes management
The positive impact of quality monitoring on quality of care has been clearly
demonstrated32,33,34. Quality data can be used for feed-back to the individual health worker,
financial incentives and/or guidance in health management. While we emphasize the
importance of quality monitoring, it should be noted that this is only one aspect of quality
management. Training of health staff, peer review, internal audits, promoting use of diabetes
registers or call/recall systems, etc. are other important tools to improve quality of care.
The notion of quality monitoring in diabetes care is trickling down into national policies. Many
countries are at this moment considering or establishing quality monitoring systems. Until
now we are not able to make a meaningful international comparison of quality of care. From
the experiences so far, several topics for discussion arise.
What should be measured? Most quality monitoring systems use a combination of process
and outcome indicators. Outcome indicators approximate best the final goal of health care,
i.e., in the case of chronic diseases, the longest possible survival at the best possible quality
of life. Process indicators are often easier to measure, but can only be used when evidence
shows their impact on health status. Sets of indicators will differ from one country to another,
but an initiative to ensure some international comparability of data is needed. Important
aspects of quality of care are hardly addressed by present quality monitoring systems, e.g.
quality of life, equity in health care, management of co-morbidities.
For each indicator a target value is set, usually at national level. Ideally target values should
take into account the characteristics of the practice population, e.g. demography, comorbidity, socio-economic status and presence of ethnic minorities.
8
Data collection, validation, processing and feed-back require an important investment in
terms of finances, technology and human resources. Data should be collected at the level
where care is delivered, i.e. for most diabetes patients in primary care. The information and
communication system should enable electronic data extraction from medical files, while
safeguarding the privacy of the patient. The quality monitoring system should result in a
meaningful feedback to the individual health worker or institution. Data processing,
validation and feed-back are usually the responsibility of the (public or private) health insurer.
Quality monitoring can be linked to financial incentives. Financial incentives can be a
powerful tool to improve quality of care, but have also clear disadvantages. Quality of care
does not only depend on the health worker’s performance but also on patients’
characteristics, e.g. progress of the disease, co-morbidity, compliance, health beliefs. This is
especially the case when quality monitoring is confined to process and outcome indicators
only, and does not include indicators relating to the structure in which care is delivered (e.g.
on training of staff, use of diabetes registers and call/recall systems, accessibility of
services). Quality-based payments can induce risk selection, i.e. removal of “badly scoring”
patients from the monitoring system, e.g. by restricting access to primary care or referral to
secondary care. They might create a too strong focus on achieving targets, at the expense
of the holistic, contextual and integrated approach of the patient. To avoid these risks,
quality-based financial incentives should always be combined with other ways to motivate
health staff.
The experience in the UK shows that quality monitoring is worth the effort (see box 2). The
Quality and Outcomes Framework resulted in a very valuable database of chronic patients
and in an improved quality of care. The latter was possible in the first place thanks to the
huge investments made in the context of the Quality and Outcomes Framework. To what
extent the system of target payments contributed to this result is not yet clear.
In many countries diabetes is one of the first fields in health care where quality monitoring
has been introduced, but it should not be confined to diabetes care or chronic diseases only.
Quality monitoring systems should cover all aspects of primary and secondary care.
 Information and communication technology are crucial to facilitate integrated
diabetes care
Information and communication technology is crucial to facilitate integrated diabetes care.
ICT facilitates quality monitoring by computerised data extraction. ICT can also be used for
creating a common medical record and enhancing communication between the members of
the interdisciplinary team. Each effort to improve diabetes care should go hand in hand with
9
initiatives to strengthen the information and communication systems. These initiatives should
start from national level to ensure system compatibility and innovation.
The use of electronic medical records in primary care is not yet universal. Electronic medical
records are mainly used for data storage and much less for quality assurance, quality
monitoring and communication between health workers.
Patients’ organisations should be involved in the organisation of health education, but also in
all levels of the policy making process. In some countries patients’ organisations are
represented in regional or national diabetes committees.
 Prevention and early detection of diabetes require more attention
Prevention and early detection of diabetes requires more attention. Many countries have
taken initiatives in these fields, but programmes often lack financial resources and
standardised programmes of assured quality.
Lifestyle changes aimed at weight control and increased physical activity are the central
objectives in the prevention of type 2 diabetes. The benefits of reducing body weight and
increasing physical activity are not confined to type 2 diabetes; they also play a role in
reducing heart disease, high blood pressure, etc. There are two main strategies for
prevention of diabetes: a population strategy aimed at reducing risk factors in the general
population and a high-risk strategy focussed on persons with increased risk of diabetes.
The population strategy often targets specific groups, e.g. school children, employers, etc.,
for which interventions are designed, not always confined to type 2 diabetes only. They are
usually initiated by local or national health authorities. The population strategy has on the
long term a high potential to reduce prevalence of not diabetes and cardiovascular diseases.
It should certainly be promoted, but the role of primary care in this is likely to be limited.
National health authorities should take the lead. Patient organisations and other nongovernmental organisations, food industry, schools, etc. should also be involved (see box 3).
A high-risk strategy identifies – in a first step – persons with increased risk for diabetes.
These persons are subsequently offered health education, lifestyle counselling, follow-up
examinations etc. Evidence shows that such interventions in persons with impaired glucose
tolerance can reduce the risk to develop diabetes after three years by about 50-60%35,36.
However, many questions remain about cost-effectiveness, identification of high-risk groups,
operationalisation etc. Finland, as one of the first countries worldwide, has set up a
prevention programme for high-risk groups, which will be evaluated in terms of feasibility and
cost-effectiveness by 2007 (see box 3).
10
It is generally believed that about one third to half of all patients with diabetes are
undiagnosed. While screening for diabetes seems logical in terms of minimizing
complications, there is no evidence so far whether this is beneficial to the individual. Studies
on the effect of screening are in progress. Opportunistic screening of high-risk persons is an
acceptable policy in countries with high diabetes prevalence, but systematic screening
programmes cannot be recommended37.
5
A strong primary care
In many countries general practitioners are still working in small practices, with little or no
supportive staff and no established interdisciplinary network. In such an environment it is
unlikely that the general practitioner is able to contribute adequately to the interdisciplinary
team, to the monitoring of quality of care, to the organisation of health education or the
implementation of prevention and early detection programmes. An overall strengthening of
primary care is essential for an efficient diabetes program.
Looking at the existing evidence, we should conclude that the triad of global payment
systems, patients’ listing and a gatekeeper role for the general practitioner is the basis for
strong primary care. Global payment systems are especially important in chronic disease
management where many activities e.g. co-ordination can be difficultly remunerated through
a fee-for-service system. Patients’ listing enables the primary care team to develop, together
with the patient, a long-term health plan, which is the basis of any chronic disease
management. The gatekeeper role gives the general practitioner the possibility to give
guidance to his patient in his flow through the health system and to ensure co-ordination
between health workers.
It is promising to notice that in several countries where primary care was traditionally not
based on global payment, patient’s listing and gatekeeper system, elements of this triad were
recently introduced: the disease management programme in Germany encompasses
(limited) global payments for diabetes care; in 2005 France took measures to promote the
gatekeeper role of the general practitioner; Belgium introduced a few years ago a voluntary
patients’ listing.
6
Conclusions
The developments in the organisation of diabetes care illustrate the transition process
European health systems are going through. They were designed in the middle of the 20th
century to deal mainly with acute diseases, but due to the progress of medicine and the
11
ageing of the European population, the focus has shifted towards chronic disease
management. Diabetes care is one of the fields where the implementation of these changes
has reached the furthest so far. Important choices have to be made, which don’t affect
diabetes care only, but also the overall health care organisation. In this paper we strongly
plead for a diabetes care model rooted in primary care. Primary care offers holistic,
comprehensive and continuing care to the diabetes patient. Evidence has clearly shown that
well structured primary care can provide high quality diabetes care.
It is clear that at present many primary care systems in Europe aren’t prepared to take up
this task. We widely discussed what reforms are needed. Global payment systems, patients’
listing and a gatekeeper role for the general practitioner are crucial preconditions for effective
chronic disease management in primary care. Important investments are required in terms of
finances, human resources and technology in order to contribute to more equity and quality.
These reforms will not only have their impact on diabetes care, but will strengthen primary
care in general and make the future implementation of other chronic disease management
programmes in primary care easier. Therefore, the debate on the diabetes care organisation
reflects the fundamental choices the European health care systems have to make at the
beginning of the 21st century.
Box 1. Substitution versus complementarity. Practice assistants in the Netherlands31,38.
Between 2000 and 2003 the Netherlands introduced practice assistants in general practice.
By the end of 2003 more than 40% of all general practitioners had access to some practice
assistant’s capacity. Practice assistants are practice secretaries with 2 years extra training
or nurses with one year extra training. They are particularly involved in the follow-up of
chronic patients. The degree of task delegation in diabetes care varies from one practice to
another. Their tasks encompass routine follow-up, but also protocol-based decisions on
treatment change. 33% of the practice assistants prescribe drugs without any supervision. In
about half of all practices with practice assistants the general practitioner is no longer
involved in routine diabetes care.
Several Dutch studies with varying degrees of task delegation have shown that practice
assistants provide at least as good care as general practitioners. In one RCT Houweling et
al. compared diabetes care fully delegated to practice assistants with the standard care
provided by general practitioners. The practice assistants were trained during one week on
the use of flow charts for the treatment of hyperglycaemia, hypertension and
hyperlipidaemia. Practice assistants obtained similar results as general practitioners for
12
outcome indicators but scored better for process indicators. Patients were more satisfied
about the care provided by practice assistants compared with the care by general
practitioners.
The driving force behind the introduction of practice assistants was not so much quality
improvement, but rather shortage of general practitioners. Studies have focused on the
question to which extent practice assistants can substitute general practitioners without loss
of quality. They show that practice assistants can provide good quality care, but many
questions remain about task delegation and legal responsibility. While many practice
assistants are prescribing drugs, there is not yet any legal basis for this. DiHAG, the
authoritative working group on diabetes care of the general practitioner’s association, pleads
for the general practitioner to review diabetes care with the patient at least once year, so that
he maintains a sufficient level of expertise in the field.
Box 2. The Quality and Outcomes Framework in England39,40.
The English National Health Service introduced in 2004 a target payment system: the Quality
and Outcomes Framework (QOF). The QOF is comprised of a range of criteria which are
grouped into 4 domains, clinical, organisational, patient experience and additional services.
The criteria are designed around best practice and have a number of points allocated for
achievement. The total number of points achieved by a practice results into a payment
amount which takes into account the size of the practice and the number of patients
diagnosed with chronic illness. In 2004/5 the clinical domain consisted of 11 areas amongst
which diabetes – representing 99 of a total of 1050 points. The QOF includes both process
and outcome indicators for diabetes care e.g. the percentage of diabetic patients who have a
record of HbA1c in the previous 15 months, or the percentage of patients with diabetes in
whom the last blood pressure is 145/85 or less. Organisational indicators included items as
practice leaflets and practice staff education.
A single national IT system enables automatic data collection from the practice files. In
addition to this each practice is visited by an assessor team comprising of a general
practitioner, a lay person and a representative of the local health authorities.
Participation to the QOF was voluntary, but the achievement standards were set rather low
so that most practices participated and got a considerable extra income (for an average
practice of the order of 100 000 € per year). Many practices used the anticipated extra
financial rewards to invest in staff and resources.
13
For 2004/5 practices achieved by average 91.3% of the maximum score (and 92.3% of the
maximum for the area of diabetes care), which was much more than the 74% put forward in
the planning stage. These results suggest an important impact of target payments on quality
of care, though evidence from a longitudinal study shows that in the years before the
introduction of the QOF the quality of diabetes care in general practice had already been
improving considerably41.
The QOF has also resulted in a detailed and complete database of chronic disease patients,
which is of great use for health care managers and researchers. For the first time diabetes
prevalence could be accurately determined at 3.2%.
While the impact of the QOF was generally well appreciated, discussion is going on about
the choice of indicators, the huge cost related to the QOF and the under-investment in
secondary care. Some also fear a too big focus on technical care and achieving targets for
the fields included in the QOF, with a loss of comprehensiveness of care. The publication of
the names of the 20 best scoring doctors in London is clearly significant for this trend.
For 2005/6 the QOF was slightly adapted. The clinical domain was extended from 11 to 18
areas, including diseases as dementia, depression and obesity. The financial reward linked
to the number of points achieved was raised by about 60%, which will create an even greater
shift of funds from secondary to primary care.
Box 3. The Programme for the Prevention of Type 2 Diabetes in Finland (2003 – 2010)42.
The prevention programme is based on evidence from the Finnish Diabetes Prevention
Study. This was the first study in the world to show that the risk of diabetes can be markedly
reduced by lifestyle modification35. The Finnish Diabetes Association coordinates the
programme which consists of three concurrent strategies:
1) The population strategy aims to promote the health status of the entire population by
means of nutritional interventions and increased physical activity. It envisages a wide range
of interventions e.g. increasing numbers of nutritionists in health care, incorporating nutrition
education and physical education in the school curriculum and military training, taking into
account the possibilities for physical activity for the general public when planning urban
areas, media campaigns, involving food industry to broaden the range of low-fat and low-salt
foods on offer, the introduction of a healthy food label etc. Non-governmental organisations
are also involved.
14
2) The high-risk strategy is targeted at individuals with a high risk of developing type 2
diabetes. The Type 2 Diabetes Risk Assessment Form is a validated screening tool
comprising of eight questions. The test is distributed by the internet, in pharmacies and
various public campaign events. People who score high on this assessment form are
referred to a public-health nurse. The nurse will screen for obesity, hypertension, impaired
glucose tolerance, diabetes and hyperlipidaemia. People are offered individual or group
counselling and medical treatment where necessary.
3) The objective of the early detection strategy is to prevent complications of diabetes by
giving newly diagnosed patients a good start with focus on nutrition, physical activity and
weight control, mostly through group counselling.
The feasibility and cost-effectiveness of the high-risk and early detection strategy are being
assessed in a pilot project in four districts till 2007.
15
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