42 National Heart Foundations, European Heart Network

National Heart Foundations

Heart foundations in Europe fulfill many roles in their work to prevent cardiovascular diseases.

They fund a great deal of research, they provide information to the general public on healthy lifestyles, and they undertake educational pro- grams in specific settings targeting selected audiences. An important role for many heart foundations is to lend support to cardiovascular patients and their families.

The heart foundations provide services at various levels to the patients. They offer a wide range of patient activities including:

– providing written information to patients on their conditions, their options for treatment, healthy lifestyles etc.

– web pages dedicated specifically to heart patients and telephone services

– funding heart patients’ centers

– establishing counseling groups for self-help and training patients to become supporters of other heart patients and their families

– running training courses in cardiac rehabilita- tion for professionals in order to give them the necessary skills and qualifications

– initiating new rehabilitation programs and ser- vices as well as rehabilitation guidelines – providing guided physical training groups and

keep fit groups in phase III of rehabilitation and events to introduce patient motivation programs.

The national heart foundations also work at a political level, advocating for more funds to be

allocated to research, for bringing down waiting lists and for better access to rehabilitation and for continued improvement of the quality of rehabil- itation services.

European Heart Network

Introduction

The European Heart Network (EHN) is a Brussels- based alliance of heart foundations and other like-minded non-governmental organizations throughout Europe. EHN has 31 member organi- zations in 26 countries.

The European Heart Network plays a leading role in the prevention and reduction of cardiovas- cular disease through advocacy, networking, and education so that it is no longer a major cause of premature death and disability throughout Europe.

To achieve this mission, the EHN’s objectives are to:

– influence European policy-makers in favor of a heart-healthy lifestyle

– monitor EU policy

– create and nurture the ties between organiza- tions concerned with heart health promotion and cardiovascular disease (CVD) prevention – gather and disseminate information relevant to

heart health promotion and CVD prevention – encourage support for comprehensive CVD

research.

EHN has a focus on population-based primary prevention through advocating for environments

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National Heart Foundations, European Heart Network

Susanne Løgstrup, Ulla-Riitta Penttilä, Silvia Aepli, and Therese Junker

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that are supportive of cardiovascular health and through establishing best practice for cardiovas- cular health promotion programs. Environments that are smoke-free and provide easy access to affordable healthy diets and to regular physical activity are a prerequisite for successful secondary prevention and cardiac rehabilitation.

European Union Developments on Patient Mobility

EHN also follows developments in the European Union that aim at setting standards for patient care and ensure quality services. Over the last 6 years, the European Court of Justice has on several occasions ruled on movements of patients across borders. These rulings led to the establishment of a high-level reflection group on patient mobility and healthcare developments in the European Union in June 2002, which submitted its report in December 2003.

The European Commission responded to it by adopting a Commission Com- munication in April 2004.

This Communication is concerned with four main areas, namely:

– European cooperation to enable better use of resources

– information requirements for patients, profes- sionals, and policy-makers

– European contribution to health objectives – responding to enlargement through investment

in health and health infrastructure.

The Communication sets out responses to a wide range of issues, including rights and duties of patients, sharing spare capacity and trans- national care, European centers of reference, health systems information strategy, and develop- ing a shared European vision for health systems.

Case Studies

The Finnish Heart Association

In Finland, secondary prevention and cardiac rehabilitation are part of public healthcare by leg- islation. The Social Insurance Institution of Finland also offers rehabilitation to patients who are at work. During the last decade, however, the budget cuts and personnel shortages in the public

sector have reduced the availability of cardiac rehabilitation and secondary prevention. Finland participated in the EUROASPIRE study,

which proved that the present patient guidance system has been unsuccessful in addressing the risk factors of coronary artery disease according to the recommendations. The Finnish Heart Association and its local branches supplement the public ser- vices by offering patient education and rehabil- itation courses, as well as by developing rehabilitation programs. Finland’s Slot Machine Association, RAY, supports the rehabilitation programs of the Finnish Heart Association financially. Today, the Heart Association is quantitatively the biggest organizer of cardiac rehabilitation in Finland. Annually, some 3400 cardiac patients participate in rehabilitation offered by the Heart Association. This number represents 10% of cardiac patients discharged from hospitals. In addition, the Heart Association offers some rehabilitation courses for smaller patient groups, such as patients with cardio- myopathy, heart transplants, or implantable defibrillators.

The Finnish Heart Association has developed a new type of outpatient care program that can be implemented with reduced resources. The TULPPA program (the name is derived from the Finnish word for “thrombus”) was designed to support the follow-up care of cardiac patients. The program has already been used in 30 munici- palities in eastern and northern Finland. The program’s primary goal is to strengthen the self- care skills and advocate lifestyle changes for patients, but also to alleviate any fears the disease may have brought on, intervene in good time if there are depressive symptoms, find the right level of exercise, and encourage patients to join peer and self-help groups. The rehabilitation is part of normal public healthcare work, with the Heart Association responsible for training the group leaders as well as producing the material.

The patients meet in groups of approximately

10 patients for 2 to 3 hours at a time for 10 weeks,

and have follow-up meetings after 6 and 12

months. The program includes all the traditional

cardiac rehabilitation topics: treatment and risks

of coronary artery disease, medical treatment,

exercise, moods, family and relationships, pain,

recognizing the deterioration of the condition,

and emergencies. Each meeting consists of theory, action, and exercise. The program framework includes selected themes, but the topics and focus can be modified to suit the group’s needs.

The groups are led by a team consisting of a nurse and a physiotherapist, and the implementa- tion of the program is largely up to them. Doctors evaluate the patients’ fitness for rehabilitation and any eventual restrictions in areas such as exercis- ing. The Finnish Heart Association trains the group leaders and they receive extensive educa- tional material for the group. Group leaders from each region get together about once every 6 months to assess their activities and to receive further training.

The implementation method of the program differs from the traditional cardiac rehabilitation.

Each participant chooses only one key risk factor and then commits to changing that factor. Since the risk factors of coronary artery disease are all interlinked, improving one risk factor also improves the others. This empowerment method,

based on the transtheoretical model of readiness for change,

facilitates the patient’s motivation to make lifestyle changes. Special emphasis is placed on setting individual goals for patients and fol- lowing up the results. The groups also combine professional knowledge with personal experience:

each group includes a lay member from the local heart association, an experienced cardiac patient who acts as a peer guide. Their role is to set a pos- itive survival example for new patients and their families.

Instead of lectures, the program consists of action, such as shopping expeditions to find out about the salt and fat contents of foods, cooking lessons, and various types of exercise. Patients also receive a lot of homework.

The changes in the patient’s risk factors are monitored for a year. The monitored risk factors are blood pressure, lipids, body mass index, waist circumference, a 6-minute walking test, and smoking. Exercise and food diaries are also used.

An evaluation study was done of the program in 2002 (57 groups, N = 547). The average age of the patients was 64, and 54% were still working.

Eighty-eight percent of the patients in the program had coronary artery disease, and the rest had metabolic syndrome. Over half of them had had cardiac infarction. Blood pressure, choles-

terol, and waist circumference all decreased and the walked distance increased during the year by a statistically significant amount. For those patients whose initial blood pressure was over 140/85 mmHg, the systolic pressure decreased on average by 14.2 mmHg (P < 0.001), and for those patients who chose blood pressure as their key risk factor, the drop was 17 mmHg. For patients whose initial cholesterol level exceeded 5 mmol/L, cholesterol dropped by 0.67 mmol/L (P < 0.001) independent of medication. The distance walked lengthened on average by 83 meters (P < 0.001) and waist circumference decreased by 3 cm (P <

0.001). Only patients whose weight was their key risk factors lost weight, but even the obese length- ened their walking distance. Choosing a key risk factor improved the results independently of other factors.

The TULPPA program is a good example of cooperation between the public healthcare and heart associations, and it will also be introduced in other parts of the country. On the whole, this rehabilitation model has proven to be useful and suitable for healthcare centers. It was also cost- effective: The rehabilitation cost per patient was two-thirds that of a hospital day.

The Swiss Heart Foundation

A cardiac event or a cardiovascular disease requires life-long aftercare. This insight led to the establishment of the first training groups for heart patients (heart groups) in Switzerland in the early 1980s, which was driven by the private initiative of committed physicians and heart patients. Four years ago, the Swiss Heart Foundation started to take care of the heart groups with the aim of promoting the establishment of a nationwide network. Today, 85 heart groups for long-term rehabilitation exist in Switzerland.

The Heart Groups and Their Activities

The members of these local self-help groups

jointly pursue their goal of reducing the risk

factors of cardiovascular disease. They are deter-

mined to regain their physical and mental abilities

and use the group to train behavior based on

health awareness that they also practice in their

daily lives. Under the supervision of experienced

physiotherapists or PE (physical education) teach- ers, they meet for an exercise program of 60–90 minutes duration once to three times a week. In addition, most heart groups regularly offer nutri- tional, smoking cessation, and stress management consulting.

Organization and Quality of a Heart Group A physician is responsible for medical matters.

The cardiac therapist is in charge of the heart training program. The quality and safety of the programs is guaranteed by the “Swiss working group for cardiac rehabilitation” (SAKR) of the Swiss Society of Cardiology.

This group has also defined a requirements specification for heart groups. One member, who has the role of a heart group leader, is usually responsible for organizational and administrative matters in most of the cases. The costs of partici- pating in a heart group vary. Frequently, partici- pants with an additional health insurance get a part of the costs reimbursed by their insurance company.

The Services Provided by the Swiss Heart Foundation

The role of the Swiss Heart Foundation is to provide coordination and information for the heart groups. When heart groups affiliate to the foundation, they are allowed to call themselves

“Partner of the Swiss Heart Foundation.” The aims of the foundation are:

– to establish a nationwide network of active, local heart groups

– to support the heart groups with help and advice and, if necessary, represent their interests in their dealings with authorities and insurers – to enable the groups to exchange experiences

among themselves

– to support a comprehensive education of heart group members and, thus, further improve the success of a long-term secondary prevention.

For this purpose, the Swiss Heart Foundation provides a variety of informative material includ- ing a practical, step-by-step manual on how to ini- tiate and establish a heart group, including ideas for activities within the group, a CD and all templates for forms and data sheets needed for

administration. In addition, brochures with easily understandable information on cardiovascular disease, rehabilitation, and secondary prevention are offered to the groups and their members. Fur- thermore, an educational manual covering healthy nutrition, smoking cessation, and stress manage- ment is in the pipeline.

With public events on the World Heart Day or by means of the health platform “Rendez-vous Heart” (educational seminars and risk of heart attack tests in the “Heart Bus”), the heart group members are encouraged to play the role of mes- sengers for a healthy lifestyle and to increase public awareness regarding the heart groups and their activities. Both the internet platform

and the newsletter “mein Herz” (my heart) aim at improving the ties within the network of heart groups.

Future Prospects

When those affected by the disease are willing to assume responsibility for their lives, one might assume that the authorities as well as social and health insurers would support and encourage the establishment of patient support groups, espe- cially in times of constantly increasing healthcare costs. Unfortunately, these bodies did not provide funds to support this project, which were requested by the Swiss Heart Foundation. This is one of the reasons why the Swiss Heart Foundation with its 85 heart groups still falls short of its aim of 200 heart groups for a nationwide coverage.

Furthermore, the still insufficient number of (trained) heart therapists and physicians willing to commit themselves to heart groups is partly responsible for the slow progress made to date. In practice, doctors still lack the necessary resolute- ness when pointing out to their patients the pos- sibilities of long-term rehabilitation. Despite all these difficulties, the Swiss Heart Foundation will continue its commitment to the promotion of heart groups, because these groups offer, last but not least, also a strategic advantage. The Swiss Heart Foundation has no regional structures.

Heart groups could partly make up for this short-

coming in the medium term by converting them-

selves into small heart foundations and improving

the implementation of our information and pre-

vention work on a local level.

References

1. http://europa.eu.int/comm/health/ph_overview/

Documents/key01_mobility_en.pdf.

2. COM(2004) 301 final.

3. EUROASPIRE I and II Group. Lancet 2001;357:995–

1001.

4. Feste C, Anderson RM. Empowerment: from philoso- phy to practice. Patient Educ Couns 1995;26:139–144.

5. Rodwell CM. An analysis of the concept of empow- erment. J Adv Nurs 1996;23:305–313.

6. DiClemente CC, Prochaska JO. Self-change and therapy change of smoking behavior: a comparison of processes of change in cessation and maintenance.

Addict Behav 1982;7:133–142.

7. www.swisscardio.com.

8. www.swissheartgroups.ch.

Further information about the European Heart Network can be found at:www.ehnheart.org, and about the national heart foundations at: www.ehnheart.org/

content/ListMember.asp?level0=1453&level1=1460.