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European Journal of Heart Failure 2001 3(1):139-144; doi:10.1016/S1388-9842(00)00099-4
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© 2001 European Society of Cardiology

Nurse-led heart failure clinics in Sweden

Anna Strömberga,b,*, Jan Mårtenssonc,d,e, Bengt Fridlundb,c,e and Ulf Dahlströma,b

a Department of Cardiology, Heart Centre, Linköping University Hospital Linköping, Sweden
b Department of Medicine and Care, Faculty of Health Sciences, Linköping University Linköping, Sweden
c School of Social and Health Sciences, Halmstad University Halmstad, Sweden
d Department of Medicine, County Hospital Ryhov Jönköping, Sweden
e Department of Primary Health Care, Göteborg University Göteborg, Sweden

* Corresponding author. Department of Cardiology, University Hospital, S-581 85 Linköping, Sweden. Tel.: +46-13-222163; fax: +46-13-222224. E-mail address: annst{at}imv.liu.se (A. Strömberg).


   Abstract
Top
 Abstract
1. Introduction
 2. Material and methods
 3. Results
 4. Discussion
 5. Conclusions
 References
 
Objective: The aim of this study was to describe the nurse-led heart failure care in Sweden.

Methods: A postal questionnaire was sent to all 86 hospitals in Sweden treating heart failure patients. All hospitals completed the questionnaire, which contained 20 questions about heart failure nurses, patient education, heart failure clinics, co-operation with primary healthcare and care programmes.

Results: Sixty-nine percent of all hospitals (n = 86) had nurses specialised in taking care of heart failure patients, in total 148 heart failure nurses. The nurses were involved in patient education and follow-up. There were nurse-led heart failure clinics in 66% of the hospitals. The clinics provided follow-up after hospitalisation, telephone counselling and drug titration. The majority of the heart failure nurses had been delegated the responsibility for making protocol-led changes in medications. Most clinics registered the number of annual visits to the clinic, and the largest clinic had up to 1000 visits. Approximately half of the hospitals had a special care plan for patients with heart failure and an organised co-operation with primary healthcare.

Conclusion: The first nurse-led heart failure clinic started in Sweden in 1990 and since then the model has been spread to two-thirds of the Swedish hospitals.

Key Words: Heart failure • Nursing • Heart failure clinics • Patient education • Care programme • Primary healthcare

Received February 3, 2000; Revised May 19, 2000; Accepted June 12, 2000


   1. Introduction
Top
 Abstract
 1. Introduction
2. Material and methods
 3. Results
 4. Discussion
 5. Conclusions
 References
 
Heart failure is a major health problem and it is expected to continue to increase in the future [1]. Heart failure is associated with a high morbidity and in industrialised countries is the most common discharge diagnosis for patients over 65 years of age. In some European countries, the number of hospitalisations has been redoubled during the last decades and the cost of frequent hospitalisations has a strong economic impact on health services [2,3].

In Sweden hospital costs account for up to 75% of the total costs for heart failure, while drug costs only account for up to 8% [4]. This has led to an increased effort to improve outcomes for patients with heart failure. There are several problems in the management of heart failure patients that need to be solved. Only a minority of the heart failure patients receives optimal treatment. Swedish data suggest that less than 30% of the heart failure patients are prescribed an ACE-inhibitor and then in doses far below those used in clinical trials [5]. Patient education in order to teach self-care is often insufficient and lack of knowledge may cause non-compliance. Studies from different settings have shown that non-compliance with medication, diet, or symptom monitoring causes the majority of the readmissions due to heart failure [6–8]. During the last years the care and follow up of heart failure patients in Sweden has begun to focus on problems concerned with compliance, patient education and treatment. Heart failure nurses play an important role in this development and the aim of this study was, therefore, to describe the nurse-led heart failure care in Sweden.


   2. Material and methods
Top
 Abstract
 1. Introduction
 2. Material and methods
3. Results
 4. Discussion
 5. Conclusions
 References
 
A descriptive survey study was carried out in all 86 hospitals in Sweden treating heart failure patients during the last month of 1998. There were 11 university hospitals, 24 county hospitals and 51 district county hospitals. The Swedish national working group of heart failure nurses developed the questionnaire used in the study (Table 1). The questionnaire contained 20 questions with both open-ended answers and closed-ended with dichotomous items or multiple choice items. The questions were divided into five different fields: heart failure nurses, patient education, heart failure clinics, co-operation with primary healthcare and care-programmes. The questionnaire was tested for content and face validity by an expert panel of cardiologists and experienced heart failure nurses. Prior to distribution, nurses from different hospitals were asked to answer the questions in order to see if any of the questions could be misleading or misunderstood. Before data were collected by means of the postal questionnaire, the hospitals were telephoned in order to find a nurse at each hospital who could be the contact person in a network for heart failure care. The questionnaire was then mailed to the contact persons who filled in the questionnaire and consulted the head of their department if they were uncertain about any of the questions. The nurse that had completed the questionnaire signed it and returned it by mail. Two reminders were necessary to reach the final response rate of 100%. Descriptive analyses were used to describe the sample and the responses to the study variables. The results from closed-ended questions were tabulated to illustrate frequency distribution and ranges. Open-ended questions were analysed by content and categorised.


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  		Table 1 Questionnaire about heart failure care

 

   3. Results
Top
 Abstract
 1. Introduction
 2. Material and methods
 3. Results
4. Discussion
 5. Conclusions
 References
 
In 69% of all the hospitals (59/86) there were nurses specially trained to take care of heart failure patients. On average there were two nurses at each hospital, in total 148 heart failure nurses. The majority of the heart failure nurses had a long experience of cardiac care, 5 years or more. They had received additional education in cardiac care, either in-service or through university courses. One of the tasks that the nurses were involved in was patient education. In 87% of the hospitals, the heart failure patients were given both oral and written information. Additionally, the patients were shown a video about heart failure in 24 hospitals, and in 23 hospitals the patients had access to interactive computer-based information. Seven hospitals had group information. In 59% of the hospitals, the family was informed as well.

Sixty-six percent of the hospitals had nurse-led heart failure clinics. The first clinic started in 1990 and Fig. 1 shows how many clinics have started each year since then. The clinics provided follow up after hospitalisation, patient education, telephone counselling and drug titration. In 40 out of the 57 clinics, the heart failure nurses had been delegated the responsibility for making protocol-led changes in medications such as ACE-inhibitors (n=39), β-blockers (n=22), stop medication with interactive drugs usually potassium sparing drugs (n=9) and decrease or increase the dose of diuretics (n=27). In 33 hospitals the out-patient heart failure clinics were situated in a medical or cardiology outpatient unit and in 24 hospitals the clinics were at a hospital ward, usually a ward specialised in heart failure care. The nurses in the clinics were all easily accessible for telephone consultation, either by means of daily telephone hours or by telephone calls to the hospital ward where the clinic was situated. Some nurses had a beeper and could be paged during the day. In 28 hospitals the nurses did not have specified time for the heart failure patients, they did their tasks within their ordinary work. In the other 31 hospitals the nurses had part- or fulltime service as heart failure nurses.


Figure 1
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  		Fig. 1 Number of new established heart failure clinics in Sweden 1990–1998.

 
The majority of the clinics registered the number of annual visits to the clinic. Some of the clinics evaluated their clinic with special emphasis on patient satisfaction (n=13), quality of life (n=10) and the number of readmissions to hospital (n=13).

Twenty-seven hospitals did not have heart failure nurses. These hospitals were all district county hospitals with less resource and fewer patients with heart failure. Fifteen of these hospitals were planning to have heart failure nurses in the near future.

Forty-one hospitals had a special care programme for patients with heart failure and the same number of hospitals had organised co-operation with primary healthcare. Examples of this co-operation were consultations and referrals from the primary healthcare to the hospitals, a joint care programme and schedules for uptitration of ACE-inhibitors. There were also regular meetings between cardiologists and GPs, heart failure nurses and district nurses. Another example was close contacts between the heart failure nurse and GP, or district nurse, when the patient was referred back to the primary healthcare from the heart failure clinic. The primary healthcare had some requests to the hospitals regarding quick help with diagnostic procedures, especially echocardiography and with drug treatment for patients with severe heart failure. Another request was co-ordinated patient education, in order to ensure that the patient got the same heart failure information in both primary healthcare and in the hospital. The GPs and district nurses wanted opportunities to make study visits to the heart failure clinic, to receive education about heart failure care and support if they wanted to build up a heart failure clinic in their primary healthcare centre.


   4. Discussion
Top
 Abstract
 1. Introduction
 2. Material and methods
 3. Results
 4. Discussion
5. Conclusions
 References
 
4.1. Heart failure nurses
During the last decade, the heart failure nurse has become an important member of the heart failure team. In the near future there will be heart failure nurses in almost all of the Swedish hospitals. Most of the heart failure nurses run heart failure clinics, a new and more independent role for the nurses. Some tasks they perform in the clinics are not within their responsibilities as nurses, for example changes and titration of medication, and therefore the nurses are delegated this responsibility. The delegation is personal, based on competence and a close co-operation between the physician and the heart failure nurse. All heart failure nurses do not have such a delegation. The physician, who initiates or confirms the medical changes afterwards, retains medical responsibility. The majority of the heart failure nurses in the study had a similar background with a long experience of cardiology and different types of additional education in cardiac care. Although the level of the practice suggests an advanced training focusing on clinical decision-making, research knowledge and skills, educational possibilities for heart failure nurses are limited, in Sweden as well as in Europe. There is no standardised education or training in Sweden to become a heart failure nurse. There are shorter university courses in advanced heart failure care for nurses, but no master degree for advanced nursing practice in heart failure or cardiology, yet. This type of graduation to become a nurse practitioner or a clinical nurse specialist is common in the United States [9], but in Europe, the United Kingdom is the only country that recently has started this type of education.

4.2. Patient education
Heart failure treatment involves both pharmacological and non-pharmacological intervention. Self-care with lifestyle changes and monitoring symptoms are important parts of the non-pharmacological treatment and to be able to perform this the patient needs education. Ni et al. [10] showed that there is a gap between patients receiving and retaining information. Forty percent of the patients reported little or no knowledge about heart failure, despite their having being taught about heart failure and self-care [10]. Similar results were found in a Swedish study [11], most patients were not aware that they had heart failure and did not know anything about fluid restriction or their medication. Ekman et al. [12] found that 20% of the patients with moderate to severe heart failure perceived themselves as healthy and not as having a chronic illness. When asked about how to recognise signs of deterioration they answered that they had been cured.

The question thus arises as to how patient education can be improved. Studies have shown that the heart failure patients require more information than the cardiac nurses think they do [13,14]. Therefore, one can presume that many patients are not well-informed and satisfied when discharged from hospital. Heart failure nurses with a special interest in and experience of patient education may meet the patients’ needs more effectively and our study showed that most of the Swedish heart failure nurses were involved in patient education. In the majority of the hospitals, the heart failure patients were given both oral and written information, but the stay in hospital continues to be shortened and the patients are often in a poor condition when hospitalised and lack the physical and mental capacity to assimilate the education. Thus, the education given in hospital needs to be repeated. One of the tasks for the nurses in the heart failure clinics is therefore to repeat the education and give additional teaching. Interactive education with computer-based information has been proven to be more effective than conventional teaching and even very old patients manage to run the computer program [15]. It is positive that computer-based information was available in 27% of the Swedish hospitals as a compliment to the education provided by nurses and doctors.

This study also showed that the family was not always involved in patient education. This is an important issue needing improvement in order to strengthen the patient's social support. The family, and especially the spouse, should take part in the treatment and be given the same information as the patient [16]. Support from persons close to the patient, especially the spouse, is an important source of help in complying with the prescribed treatment. Spouses encourage and remind the patients to take their medication and follow the prescribed lifestyle changes [17].

4.3. Heart failure clinics
The first time the concept of heart failure nurses working in an outpatient clinic occurred in the literature was in 1983 [18]. The first nurse-led heart failure clinic started in Sweden in 1990 [19] and since then the model has been spread to many Swedish hospitals. Nurse-led heart failure clinics have reduced the need for hospital care since titration of drugs is performed in outpatient clinics today. One can also presume that early follow-up after hospitalisation might prevent readmissions. Rich et al. [20,21] investigated the effect of a multidisciplinary, nurse-directed intervention and found that the intervention improved the patients’ compliance, quality of life and decreased the rate of readmission and the healthcare costs.

There are only a few other experimental studies examining the isolated effects of nurse-led interventions in heart failure patients. Cline et al. [22] showed that the mean time to readmission was prolonged with nurse-led heart failure care. Jaarsma et al. [23] showed that the patient's self-care abilities were improved with patient education and nursing support. Ekman et al. [24] found that for the majority of very old patients above 80 years with severe heart failure, a nurse-led heart failure clinic was not eligible. Home-care has been shown to be more effective in preventing readmissions in this group [25]. Nurse-led heart failure clinics are optimal in heart failure patients who have preserved cognitive functions, since an important issue in the follow-up is patient education with the target of increasing their self-care abilities. It is also necessary that the patient is mobile and able to come to the clinic at the hospital.

Every clinic needs to have quality assurance and a regular evaluation. The present study showed a need for further improvement in this area, only 38% of the clinics evaluated their work. Questions about which instruments they used were not included in the study and therefore we do not know if validated instruments were used. It is of great importance to continue to evaluate the clinics from a health economic perspective and for patient satisfaction, quality of life and compliance with valid and reliable instruments. National and international guidelines need to be developed for the care in nurse-led heart failure clinics and the education of heart failure nurses. At the moment there is nothing mentioned in the European guidelines about this [26], but it should be included in future guidelines.

4.4. Primary healthcare and care programmes
Most heart failure patients are treated in primary healthcare and therefore it is very important to improve the care and outcomes there. Good co-operation between the hospital and primary care is needed to achieve this. It is therefore deficient that half of the hospitals did not have this collaboration. Care programmes can facilitate this collaboration, but to make them work in reality, these programmes need to be developed by a multidisciplinary team with representatives from both the hospitals and primary care.

4.5. Methodological issues
A questionnaire was used to collect data, another way could have been to collect data through interviews. The disadvantage with interviews is that it would have been very time-consuming to both the interviewer and the informants. Another aspect was that some of the questions, for examples data on the number of patient visits usually take some time to find out. The advantage with an interview is that ambiguous or confusing questions can be clarified and that the response rate tends to be higher, although the latter was not a problem in this study. The high response rate can be explained by the fact that the questionnaire was easy to fill in and directly addressed to a nurse with an interest in heart failure patients and that the nurses felt that the investigation was relevant. The results are interesting because the total population in a country was studied.


   5. Conclusions
Top
 Abstract
 1. Introduction
 2. Material and methods
 3. Results
 4. Discussion
 5. Conclusions
References
 
During the last years there have been several changes in the management of patients with heart failure. The present study focused on describing the nurse-led heart failure care in Sweden. The results showed that there were heart failure nurses and nurse-led heart failure clinics in two-thirds of the Swedish hospitals. Heart failure patients received both written and oral information in the majority of the hospitals. Special care plans for patients with heart failure existed in 48% of the hospitals and the same number of hospitals had organised co-operation with primary healthcare.


   Acknowledgements
 
We thank the nurses who answered the questionnaire and the nurses involved in the National Working Group on Heart Failure for their involvement in the study.


   References
Top
 Abstract
 1. Introduction
 2. Material and methods
 3. Results
 4. Discussion
 5. Conclusions
 References
 

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