Quality of life and self-monitoring: CVD prevention in practice. The role of patient organizations in CVD prevention
International Self-Monitoring Association of Oral Anticoagulated Patients (ISMAAP), Geneva, Switzerland, c/o Etude R. Dagon, Rue du Marché 12-14, CH- 1204, Geneva
Corresponding author. E-mail address: information{at}ismaap.org
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Abstract |
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 Top Abstract IntroductionThe ISMAAP experienceSummaryReferences |
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Engaged patients with a good knowledge of their own disease are open to prevention and are also active in managing their own disease. However, high blood pressure and other cardiovascular risk factors are frequently viewed not as a disease but merely as one of the trappings of age. As there is no mental trauma, there is less motivation for self-help measures than for symptomatic diseases. Patients' organizations and/or self-help groups are for many patients a refuge where they can learn more about dealing with their own disease and become experts in their own cases. From the point of view of prevention, these institutions may not be in a position to provide similarly effective services of this kind, even if blood pressure is a risk factor highly suitable for self-monitoring.
Based on existing experiences, diabetic patients and/or anticoagulated patients who carry out self-monitoring and/or self-management are more prepared to regularly check their blood pressure at home than patients without any manifest disease.
Media information campaigns on the ‘consequences of untreated high blood pressure’ in tandem with the call to take a little better care of oneself would be a step towards self-monitoring of blood pressure (‘You only need to change your habits slightly; but do it for the sake of your quality of life’).
Key Words: High blood pressure • Self-measure of blood pressure • Cardiovascular risk • Anticoagulated patients • INR Self-testing • Patients organization • Lifestyle
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Introduction |
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TopAbstractIntroductionThe ISMAAP experienceSummaryReferences |
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Interested people but also patients with a good knowledge of their own disease are open to prevention and are also active in managing their own disease. However, many people view high blood pressure not as a disease but merely as one of the trappings of age. As there is no mental trauma, blood pressure is simply part of life that may make one tired (‘it's my low blood pressure’), give a red face (‘I've just finished exercising’), or produce the red faces seen down the pub (‘he must have high blood pressure’). The fact that constant high blood pressure can bring with it long-term secondary diseases is only realized by the ‘best-agers’ if this group has an active life. These are people who despite the demands on their time from family and work still exercise and look after their health. They have regular check-ups and comply with any warnings given by the doctor.
If blood pressure does involve mental trauma, effective ‘timely and translatable communication’ from doctor to patient is extremely important. This involves not only discussing possible secondary diseases such as atherosclerosis and stroke, but also the fact that drugs may be required and that these may have side effects. It becomes more difficult if changes in lifestyle are involved, such as reducing body weight, a low-salt diet, daily fruit and vegetables, sport, and giving up smoking. Here self-measurement of blood pressure offers the possibility of personal monitoring and asking why blood pressure might have gone up one day and is not normal. Listening to the body, to understand and accept that actions trigger reactions with blood pressure, can have a motivational impact.
Prevention also involves starting to regularly monitor blood pressure while still young. However, attitudes are formed very early in life: children learn from their parents and later from their friends, from advertizing, etc. and this wealth of influences with different conflicting messages reduces active prevention to a small group that has formed an active interest. The problem is how to make this group of people who are active for longer and are interested in their body as large as possible and to support their efforts at reducing risk. Some lessons might be learned from the work of self-monitoring associations for anticoagulated patients.
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The ISMAAP experience |
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TopAbstractIntroductionThe ISMAAP experienceSummaryReferences |
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Anticoagulated patients regularly have to have their International Normalized Ratio (INR) value determined. This INR value is determined world-wide every 4–6 weeks, largely by doctors, laboratories, or anticoagulation clinics. The medication until the value is next determined is fixed by the institutions.
For 20 years1 now in Germany, anticoagulated patients have been able to determine their INR values (mostly weekly) themselves and also choose their own medication (INR self-management). Globally Germany is an exception in INR self-management. Legal framework conditions have enabled health insurance companies to provide patients with coagulometers free of charge. In the meantime, doctors have also welcomed INR self-management, since it has significantly improved compliance. INR self-management leads to a better understanding of patients' own disease and therefore to improved compliance of treatment and anticoagulants. The result is a lower incidence of complications such as bleeding and/or thrombembolic events and a better quality of life. Doctors now talk of patients as being responsible and also experts in their own cases.
In some countries INR self-monitoring2 is gradually winning through. Although anticoagulated patients can determine their own INR values here, they still have to submit these INR values to the attending doctor after a period of time specified by the doctor, who then determines the medication for the next period. If the INR value ever falls outside the individual therapeutic range, the patient must contact their doctor immediately.
In the future telemedicine3 will be another way of having self-determined INR values checked at one's regular clinic or at institutions world-wide by telephone (coagulometer/modem) or via the Internet (personal website).
The International Self-Monitoring Association of oral anticoagulated Patients (ISMAAP), Geneva, has given itself the task of encouraging patients to assume more responsibility themselves in their long-term treatment with anticoagulants (Figure 1). Nine national patients' organizations are members of the ISMAAP under the presidency of Chiristian Schaefer. In collaboration with partner organizations (the doctors' organization ISMAA, the American doctors' organization AnticoagulationForum and the WHF) the aim is not only to promote better compliance but also to improve treatment with anticoagulants. Here training programmes and tests help improve the level of knowledge of anticoagulated patients on living with anticoagulants.
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C. Heneghan, University of Oxford, reported in a meta-analysis4 that patients who monitor their own INR values display a lower mortality (–39%) and thrombembolic events were reduced by 55% compared to those who have their INR values determined by doctors/anticoagulation clinics. The benefits were even starker if patients determined the anticoagulant dose themselves. In this case the mortality fell by 63% and thrombembolic events by 73%. However, it was noted by the author that patients have to be appropriately trained, and not every patient is suitable.
Patients' organizations only occasionally point to general preventive measures. These tend to be more concerned with managing the disease. It would, for example, be desirable if patients' organizations and/or self-help groups that are concerned with heart diseases in the widest sense addressed the subject of high blood pressure and its consequences more regularly at meetings.
National heart foundations offer comprehensive information on diseases of the heart. However, this information is only rarely requested by people who do not yet suffer from high blood pressure.
Media (TV health programmes, health magazines, health portals, and health forums on the Internet) and information in pharmacies and doctor's surgeries are naturally seen and read by middle-aged and elderly people. So-called lifestyle/wellness magazines are generally read by younger, sporty people. It would be important in relation to prevention to also refer to the subject of high blood pressure here.
Patients with atrial fibrillation5 (this group is growing world-wide) are increasingly treated with anticoagulants, i.e. these patients have to have their INR values determined or determine them themselves. One preventive approach would be for these patients to monitor their blood pressure at home as well as their INR values. Both values (INR value and blood pressure value) should then be given to the doctor for assessment. A similar procedure could also be adopted for patients with synthetic heart valves. With this dual control and the existing compliance on the basis of treatment with anticoagulants at least one patient group suffering from heart disease would be incorporated.
Diabetic patients should also take it upon themselves to monitor their blood pressure at home on a regular basis. The blood pressure record would then be handed to the doctor at the next consultation and appropriate medication initiated if necessary. In the case of diabetic patients who regularly monitor their blood glucose values themselves, self-monitoring of blood pressure could be expected to be easer implemented than in non-diabetic individuals.
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Summary |
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TopAbstractIntroductionThe ISMAAP experienceSummaryReferences |
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In the same way that people regularly climb onto the scales, measuring one's blood pressure at home should also form part of one's preventive actions. Media information campaigns on the ‘consequences of untreated high blood pressure’ in tandem with the call to take a little better care of oneself would be a further step towards self-monitoring of blood pressure (‘You only need to change your habits slightly; but do it for the sake of your quality of life’).
Patients' organizations and/or self-help groups are for many patients a refuge where they can learn more about dealing with their own disease and become experts in their own case. From the point of view of prevention, these institutions may not be in a position to provide similarly effective services of this kind. Heart disease remains far and away the number-one cause of death and so not everyone will be able to be convinced to follow a lifestyle adapted to prevention.
Based on existing compliance, patients who already carry out self-monitoring and/or self-management, such as anticoagulated patients, would be more prepared to regularly check their blood pressure at home.
Conflict of interest: none declared.
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References |
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TopAbstractIntroductionThe ISMAAP experienceSummaryReferences |
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- Schaefer C. Anticoagulation Self-Management 20 years on. Anticoagulation news (2006) 3:16.
- Schaefer C. Patient Advocacy in INR Self-Monitoring. Anticoagulation Forum (2003) 3:1–3.
- Koertke H, et al. Mehr Sicherheit durch Telemedizin. Die Gerinnung (2004) 17:4.
- Heneghan C, et al. Self-monitoring of oral anticoagulation: a systematic review and meta-analysis. Lancet (2006) 367:404–411.[CrossRef][Web of Science][Medline]
- Tebbe U. Antikoagulation bei Patienten mit Vorhofflimmern. Die Gerinnung (2006) 24:9–11.
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