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Br i hssa
EFPC Position Paper
Bar cel ona Resear ch I nst i t ut e
of H eal t h and Soci al Ser vi ces
Assessment
Chronic Heart Failure: The role of Primary Care
Draft Paper
Authors: Josep Vilaseca and Toni Dedeu
Position Paper
Draft Paper
Chronic Heart Failure: The role of Primary Care
Authors: Josep Vilaseca and Toni Dedeu
BRIHSSA (Barcelona Research Institute of Health and Social Service Assessment)
September 2007
Introduction
Chronic heart failure (CHF) is one of the major health problems in Europe. It is clear
that heart failure prevalence is increasing. It afflicts from 10 to 14 million patients in
Western Europe and the United States alone according to the literature, [1, 20] and
this number is forecast to increase to 30 million by the year 2020 just in Europe [20]
Nearly 40% of heart failure patients will die within one year of first hospitalisation and
only 25% of men and 38% of women will survive more than five years following
diagnosis [21,22] Over 3.6 million new cases of heart failure are reported each year in
Europe [20] Heart failure is more common than most cancers, including breast,
testicular, cervical and bowel cancers [23] Admission to hospital with heart failure has
more than doubled in the last 20 years [20] Heart failure patients experience a lower
quality of life than patients suffering from any other chronic disease [20] By 2020 the
number of deaths in Europe attributed to heart failure will be nine million each year.
[20]
CHF is the only cardiovascular disorder that continues to increase in both prevalence
and incidence, and as the population continues to age, it is expected that the
prevalence of this disease will continue to rise. [1-4]
The above data, in the context of European health systems sustainability, reflects
that primary health care must play a determinant role in the management of CHF,
and the professionals and policy makers at this health level will have to re-think their
tasks, level of knowledge and how they deal with CHF. There is still a long way to go
for both professionals and policy makers and a new challenge will be to incorporate
the citizens in this debate.
This Position Paper shows the variability in the management of CHF, but insufficient
data, experience and research in primary health care highlight the need for further
developments in this field.
The key role of primary care: from gatekeeper to high
resolution doctor
Open access to secondary care or family doctor as gatekeeper: this is one of the
main differences among the European public health services. For decades the role of
the family physician has been widely described as a gatekeeper. Today, in our
opinion, we need to take this role a step further, to that of a high resolution doctor.
1
Br i hssa
EFPC Position Paper
Bar cel ona Resear ch I nst i t ut e
of H eal t h and Soci al Ser vi ces
Assessment
Chronic Heart Failure: The role of Primary Care
Draft Paper
Authors: Josep Vilaseca and Toni Dedeu
In Western Europe, in countries such as The United Kingdom or Catalonia, the
patient has to be attended first by a family doctor to have access to specialized care.
This role has been widely described, and seems to be cost effective.
In the case of CHF, the role of the family physician should appear as the cornerstone
of an integrated care: in prevention, early detection, treatment, follow-up and referral
of the patient with CHF.
Data show that the general practice is the most frequent point of encounter of
patients with heart failure, and the role of Family Medicine doctors and nurses is
becoming a key element in the management of heart failure. As Candida Fonseca
states in one of her review articles on heart failure, improving the reliability of
diagnosis in primary care is essential since determining the aetiology and stage of
heart failure leads to different management choices to improve symptoms, quality of
life and disease prognosis. Furthermore, early diagnosis is needed, when there may
be no symptoms, since treatment can delay or reverse disease progression.[3]
Prevention of CHF
The most appropriate place for preventive activities focused on CHF is the practice of
the family physician. Whether a preventive activity is cost effective or not should be
accurately evaluated.
There are two main determining factors:
1- The prevalence of the risk factor / disease in a particular country
2- The cost of the preventive activity in a particular country
These two factors vary from one country to another, necessitating local policies.
Hence, European guidelines should be developed and should be adapted to local
features.
In this draft the following preventive activity performed in Primary Care will be widely
discussed and evaluated:
1- Recommendation to practise self care: widely discussed in a position paper of
the EFPC[13].
This intervention appear to be cost effective; nevertheless, further studies are
required.
2
EFPC Position Paper
Chronic Heart Failure: The role of Primary Care
Draft Paper
Authors: Josep Vilaseca and Toni Dedeu
Br i hssa
Bar cel ona Resear ch I nst i t ut e
of H eal t h and Soci al Ser vi ces
Assessment
Early detection
CHF is a syndrome rather than a diagnosis of one single pathology. The clinical signs
and symptoms may range from asymptomatic patient to a very symptomatic one. The
role of the family physician is crucial in early detection and diagnosis of CHF: as he
or she is trained to consider the patient as a whole. The probability of error
considering separately signs and symptoms of CHF is high: for instance, a patient
with dyspnoea may visit either the cardiologist or the pneumologist, or a patient with
hepatic enlargement may be referred to digestologist. Hence we can infer that the
use of medical resources to treat the disease at the primary care level are at a lower
cost than spontaneous access of the patient to secondary care [12].
The key signs and symptoms of CHF, and the gold standard for its diagnosis should
be carefully established and evaluated. Although recent guidelines describe the
management of CHF, in order to compare the effectiveness of primary care as a high
resolution versus free access to secondary care, a number of key indicators should
be performed.
Our proposal is to use a number of signs and symptoms as indicators of suspected
CHF. By studying these indicators where they have been evaluated (either in primary
or secondary care), we may compare the cost- effectiveness of the interventions.
Symptoms:
- breathlessness
- exertional intolerance
- paroxysmal nocturnal dypsnoea
- orthopnea
- history of pulmonary oedema
- history of risk factors (coronary heart disease, hypertension)
Physical signs:
- hepatic enlargement
- venous jugular pressure > 6 cm
- oedema of the lower limbs
- rales at pulmonary auscultation
- ventricular gallop
- sinus tachycardia
To establish an appropriate diagnosis, a gold standard should be defined. We should
consider the differences in the access to complementary tests within primary care.
The way in which doctors can refer their patients for specific tests may differ even in
different territories of the same country. Currently there is no data available on these
differences in Europe.
Treatment
Heart failure is treated in various ways. The aims of treatment are to reduce
symptoms and delay progression of the disease, reduce hospitalisation, and extend
3
EFPC Position Paper
Br i hssa
Chronic Heart Failure: The role of Primary Care
Draft Paper
Authors: Josep Vilaseca and Toni Dedeu
Bar cel ona Resear ch I nst i t ut e
of H eal t h and Soci al Ser vi ces
Assessment
and improve the quality of life [12]. The family doctor can achieve these aims and is
also able to treat CHF effectively in the early stages, in the elderly and in homecare
outpatients. Clinical Guidelines and the necessary drugs are available for family
doctors in Europe.
Statistics collected by family medicine doctors show that the patients with CHF
currently prescribed with the drugs recommended in various guidelines varied from
0% to 100%. And currently the average of recommended treatment prescribed by
family doctors is around the 50%. Data in the last decade show a progressive
improvement in the use of recommended drugs prescribed by family doctors. Further
analysis should be carried out in the effective implementation of clinical guidelines in
CHF at the primary health level in Europe.
Coordination of care in CHF: integrated care and disease
management programmes
The development of organised health systems, with integration of care across
different levels of care and services, means that patients have to go to several
services for various aspects of their health needs. In some countries the family doctor
conducts the whole referral and counter-referral process, and in other countries the
patient chooses the specialists without a referral from the family doctor. Coordination
requires a key element; the transfer of information generated in different places [15]. It
is well reported that it is better to manage specific chronic diseases where several
professionals and services are involved. Because of that the development of
Disease Management Programmes (DMPs) have proved to be a good tool of
coordination in a cost-effective way. Therefore DMPs may be defined as a complete
approach to care of a particular disease encompassing prevention, treatment, followup care, including implementation of guidelines. [6] The involvement of different
professionals and levels of care and giving a special role to patients improve the
quality, efficiency of care delivery and health outcomes [5]. In parallel with other
chronic disease programmes, heart failure DMPs have been recently established in
some countries in Europe and they are well disseminated and evaluated in the USA.
These DMPs have shown a reduction in mortality and hospitalisations in HF patients.
Because various types of DMP appear to be similarly effective, the choice of a
specific programme depends on local health services characteristics, patient
population, and resources available [4].
Currently there are basically two approaches in disease management programs in
heart failure. One remains restricted in application and generally confined to the
sicker group of the heart failure population, and the benefits of a DMP will only
benefit these patients when their condition deteriorates to a stage that requires
hospitalisation [7]. The second approach should work towards the development of an
expanded DMP [7], in which heart failure is a chronic disease and not a terminal
disease and taking into account patients with established heart failure and those at
risk of its development. Hence, the majority of care should be organised from the
community setting led by the family doctor and nurse as for much of the natural
history of heart failure, the patient is clinically stable and the focus of the primary care
and especially the family medicine doctor should be directed at maintaining this
relative well-being.
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Br i hssa
Bar cel ona Resear ch I nst i t ut e
of H eal t h and Soci al Ser vi ces
Assessment
EFPC Position Paper
Chronic Heart Failure: The role of Primary Care
Draft Paper
Authors: Josep Vilaseca and Toni Dedeu
Initial diagnosis of heart failure is uncertain as it is a syndrome. The holistic approach
to the patient’s health status and the ability to make an accurate diagnosis of heart
failure can only be provided by the family medicine doctor if the doctor is well trained
in this area. Not all experts share this conviction: Cowie et al. in an article published
in the Lancet in 1997 stated that delegating the responsibility of the initial diagnoses
phase to the family medicine-led community services is not an effective approach, as
reports have demonstrated incorrect diagnoses in as many as 60% of cases [10]. This
brings us to the observation that this is partly explained by the difficulty in diagnosing
heart failure in its earliest stages due to the often non-specific nature of presentation.
We should acknowledge that in many countries, essential investigations may not be
readily available to family medicine doctors to aid diagnosisHowever, Cowie’s paper
was written a decade ago and current thinking has changed and evidence has shown
that primary care is in an excellent position to detect clinical deterioration and an
early intervention can reduce the need for hospitalisation and re-hospitalisation [8,9]. .
This is an area to explore within this position paper.
Facilitating access to the asymptomatic and minimally symptomatic sections of the
heart failure population is another important challenge within an expanded model of
disease management. The most successful strategy in this regard will be the ongoing and continuing education of the family medicine doctor in heart failure. In doing
so, the family medicine doctor will become more aware of those needing referral, and
will become more confident in dealing with certain heart failure issues which should
not require referral. Formal shared-care protocols have been developed in many
DMPs and they involve close ongoing liaison between cardiologists and family
medicine doctors and nurses [11].
Finally, a well developed integrated care system and DMP needs a centralised
information system. An electronic internet based system, with shared and confidential
clinical records should be the goal (primary care, secondary care, emergency care),
but most European countries are still in early stages of the development of a
comprehensive IT system. Other programmes which contribute to the integrated
approach of CHF are programmes that include telemedicine and telemonitoring
(structured telephone support programmes) for patients with CHF. These work in a
pro-active way in the follow up of patients, from the clinically mild ones to the severe
acute patient and in the detection of non respondent patients with CHF. These
programmes have been reported to have a positive effect on clinical outcomes in
community dwelling patients [16,17] .
CHF Expert Patient programmes in Europe, such as the one currently taking place in
Catalonia (in its third year), show that patient satisfaction has increased and there is
a more rational use of health services by this kind of patient as they feel more
confident with their illness [17].
Quality of life of people with heart failure and the end of life care in heart failure
should be seen as part of the whole process and an integrated care approach should
be taken into account. There is evidence in some research that the quality of life of
people with heart failure is poor relative to that found in people with other conditions
[12,35].
5
Br i hssa
EFPC Position Paper
Bar cel ona Resear ch I nst i t ut e
of H eal t h and Soci al Ser vi ces
Assessment
Chronic Heart Failure: The role of Primary Care
Draft Paper
Authors: Josep Vilaseca and Toni Dedeu
Citizens
Referring to data from the SHAPE survey (Study group on Heart Failure Awareness
and Perception in Europe), which was carried out in 9 European countries (France,
Germany, Italy, The Netherlands, Poland, Romania, Spain, Sweden and The UK) in
April 2002, the following areas were analysed: (i) recognition of heart failure by
the citizens: 86% of the people surveyed had heard of heart failure. However, only
3% could correctly identify the signs and symptoms of heart failure – despite it
affecting 14 million people across Europe. More than 70% of respondents did not
consider heart failure to be a serious condition – despite the fact that the disease is
extremely debilitating, causing a high rate of hospitalisation. Over 65% believed that
survival rates from heart failure were better than those for cancer – in fact the
survival rates are considerably bleaker, with only 25% of men and 38% of women
living longer than five years after diagnosis. 34% believed heart failure to be a natural
consequence of ageing – yet 40% of those affected die within a year of first
hospitalisation, the opposite of a gentle decline into old age. (ii) Comparison with
other healthcare conditions: Only 43% thought heart failure was more common than
cancer in their country. 67% wrongly believed heart failure patients lived longer than
cancer patients. 66% wrongly thought chances of survival were higher in heart failure
patients than in HIV patients. (iii) Treatment: 65% believed that heart failure could be
treated by drugs and 38% by pacemakers. 18% wrongly thought modern drugs could
not improve heart failure survival and 30% wrongly thought that drugs could not
prevent the development of heart failure. 61% of respondents wrongly thought that
heart failure patients should live quietly and avoid any form of exercise. 67% would
prefer to feel better and improve their quality of life than live longer if they were
diagnosed with heart failure. (iv) In terms of costs, there was a general misperception
that heart failure results in lower healthcare expenditure than cancer or HIV, although
there were equal scores for the cost of HIV and heart failure in the UK and Poland
[20].
As a result of the studies to date we believe that a priority should now be the
dissemination of information to the public at large regarding the disease. This should
be carried out mainly by the primary care professionals, especially the Family
Medicine Doctor with a view to empowering the general public in their self health
care.
Conclusions

Family medicine doctors are the clinicians who most frequently make the
diagnosis of heart failure.

There are no specific data of CHF reported from international organizations
such as WHO and Wonca

There are almost no papers published nor oral communications or posters
from Primary care scientific societies and associations nor Wonca in spite of
the high incidence and prevalence of CHF in the population.
6
Br i hssa
EFPC Position Paper
Bar cel ona Resear ch I nst i t ut e
of H eal t h and Soci al Ser vi ces
Assessment
Chronic Heart Failure: The role of Primary Care
Draft Paper
Authors: Josep Vilaseca and Toni Dedeu

Most of the literature and papers about CHF in indexed journals are written by
Cardiologists, and very few are from the primary care field.

Population-based studies on heart failure are scarce and the studies that
have been published are particularly difficult to compare because of
differences in methodology.

Societies have well developed papers but with very few European
comparisons and without mention of the role of primary care in CHF.

Prescription data show that not everyone with heart failure is receiving
effective treatment.

The prevention of coronary heart disease and early diagnosis and treatment
of hypertension should prevent long term damage to the heart muscle thereby
reducing the burden of heart failure in future years.

There is no universally agreed definition of heart failure. The presence and
severity of heart failure can be assessed by physical examination,
questionnaires, echocardiography, chest x-ray, exercise testing and blood
test analysis. All these methods have major limitations when used
independently, and there is no one investigation which can be considered
“gold standard” for confirming the diagnosis. Because of this, diagnosing
individual cases, especially where the syndrome is mild, remains problematic
without the view of a professional that can manage the patient in a
comprehensible way, and this professional is the family medicine doctor.

There is still a lack of confidence among family medicine doctors in Europe in
establishing an accurate diagnosis in order to treat patients with CHF.

Access to further investigation of CHF by family medicine doctors such as
laboratory measurements, ECG, chest X-ray and cardiac imaging is required
for an accurate diagnosis which should lead to successful management.

There is a need to educate and train family medicine doctors in CHF in order
to recognise and treat patients suffering from this illness from the very initial
stages to later ones.

International workshops, meetings and seminars among family medicine
doctors debating on the state of the art in their countries in CHF should be
carried out.

Mapping the involvement and the current situation of primary care in CHF in
Europe (disaggregated by countries or regions) is needed.
7
Br i hssa
EFPC Position Paper
Bar cel ona Resear ch I nst i t ut e
of H eal t h and Soci al Ser vi ces
Assessment
Chronic Heart Failure: The role of Primary Care
Draft Paper
Authors: Josep Vilaseca and Toni Dedeu
References
[1]
Louise R Newson. GP Shirley Medical Practice West Midlands UK. Diagnosing
and managing heart failure – 10 top tips. The New Generalist | Volume 5 |
Number 2 | Summer 2007
[2]
Owan TE, Hodge DO, Herges RM, et al. Trends in prevalence and outcome of
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[3]
Fonseca C. Diagnosis of heart failure in primary care. Heart Fail Rev (2006)
11:95-170
[4]
Roccaforte R, Demers C, Baldassarre F, Teo KK, Yusuf S Effectiveness of
comprehensive disease management programmes in improving clinical
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[5]
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Amstrong E. Disease management: state of the art and future directions. Clin
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[7]
Remme WJ, Sweedberg K. Guidelines for the diagnosis and treatment of
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[8]
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[9]
DeBusk RF, Miller NH, Parker KM, et al. Care management for low-risk patients
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[11] Mc Donald K, Conlon C, Ledwidge M. Editorial. Disease management
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[12] Petersen S, Rayner M, Wolstenholme H. Coronary heart disease statistics:
heart failure supplement. 2002 edition. University of Oxford
[13] European Forum for Primary Care: Encouraging the people of Europe to
practise self care: the primary care perspective. Position Paper 2006
8
Br i hssa
EFPC Position Paper
Chronic Heart Failure: The role of Primary Care
Bar cel ona Resear ch I nst i t ut e
of H eal t h and Soci al Ser vi ces
Assessment
Draft Paper
Authors: Josep Vilaseca and Toni Dedeu
[14] Fuat A, Hungin AP, Murphy JJ. Barriers to accurate diagnosis and effective
management of heart failure in primary care: qualitative study.
[15] Starfield B. Primary Care. Balancing health needs, services and technology.
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[16] Clark RA, Inglis SC, McAllister FA, Cleland JG, Steward S. Telemonitoring or
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systematic review and meta-analysis. BMJ
[17] Fabrellas N, Dedeu T, Agramunt M, Gonzalez MA, Picas JM. Barcelona Expert
Patient Project: Sharing Decisions. Oral session 18th Wonca World
Conference.
[18] Cowie MR, Zaphiriou A. Recent developments: Management of chronic heart
failure. BMJ 2002;325;422-425
[19] Rutten FH, Moons KG, Cramer MJ, Grobbee DE, Zuithoff NP, Lammers JW,
Hoes AW. Recognising heart failure in elderly patients with stable chronic
obstructive pulmonary disease in primary care: cross sectional study. BMJ
2005;331;1379[20] SHAPE Survey Results to the General Public, Annual Congress of the
European Society of Cardiology in Vienna, September 2003.
[21] Blackledge HM, Tomlinson J, et al. Prognosis for patients newly admitted to
hospital with heart failure: survival trends in 12 220 index admissions in
Leicestershire 1993-2001. Heart 2003;89:615-620
[22] Ho KK et al. Survival after the onset of congestive heart failure in Framingham
Heart Study subjects. Circulation 1993; 88: 107-15
[23] Stewart S et al. More ‘malignant’ than cancer? Five year survival following a
first admission for heart failure. The European Journal of Heart Failure 2001; 3:
315-322
[24] Jouven X and Desnoa M. Epidemiology of heart failure.Rev Pract 2002; 52:
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[25] Académie Nationale de Médecine, January 2002
[26]
www.journalmed.de
[27] German Heart Foundation www.herzstiftung.de
[28] German Federal Statistical Office, 2002
[29] German Association for Cardiology and Cardiovascular Research, 2004
9
Br i hssa
EFPC Position Paper
Bar cel ona Resear ch I nst i t ut e
of H eal t h and Soci al Ser vi ces
Assessment
Chronic Heart Failure: The role of Primary Care
Draft Paper
Authors: Josep Vilaseca and Toni Dedeu
[30] Ho KK et al. The Epidemiology of Heart Failure: The Framingham Study, J Am
Coll Cardiol 1993; 22(Supplement A):6A-13A
[31]
Italian Ministry for Health, 2001
[32] British Heart Foundation Statistics website, www.heartstats.org
[33
]Remme W, Zannad F, Rauch B, McMurray J, Cohen-Solal A, Keukelaar K,
Boccanelli A, Lopez-SendonJ, Hobbs R, Macarie C, Dietz R, Ruzyllo W, Cline
C. Awareness of Recommended Heart Failure Management Among
Specialists.Do Internists, Geriatricians and Cardiologists Differ? Results of
SHAPE. Sticares Cardiovascular Research Institute, Rhoon, the Netherland.
Poster
[34] British Heart Foundation 14 Fitzhardinge Street, London, W1H 6DH. Web:
www.bhf.org.uk and Comprehensive patient resources: www.patient.co.uk
[35] Adam KF, Lindenfeld J, et al. HFSA 2006 Compehensive Heart Failure
guideline. J Cardi Fail; 2006; 12:e 1-e 122
[36] NICE Guideline in Chronic Heart Failure
Various sources of information have been used in compiling this position
paper. Data from different sources are collected in different ways and with
different degrees of validity and reliability.
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