EFPC Position Paper Chronic Heart Failure: the Role of Primary Caredraft Paper

EFPC Position Paper Chronic Heart Failure: The role of Primary CareDraft Paper

Authors: Josep Vilaseca and Toni Dedeu

Position Paper

Draft Paper

Chronic Heart Failure: The role of Primary Care

Authors: Josep Vilasecaand 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 bothprofessionals 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.

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: recommendation to practise self care: widely discussed in a position paper of the EFPC[13]. This interventions appear to be costeffective; nevertheless, further studies are required.

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 thatthe 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 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, follow-up 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.

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 on-going 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 basedsystem, with shared and confidentialclinical 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 tohave 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].

Citizens

Referringto data from the SHAPE survey (Study group on Heart Failure Awarenessand 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 nospecific 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 Woncain spite of the high incidence and prevalence of CHF in the population.

• 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.

References