Education for patients with heart failure: rationale, evidence, and practical implementation

Renjith ANTONY, MD
Department of Cardiology
Castle Hill Hospital
Hull York Medical School
University of Hull
East Riding of Yorkshire

Education for patients with heart failure: rationale, evidence, and practical implementation

by J. G. F. Cleland, A. Trotman-Beasty, P. Atkin,
A. Crundall, T. Castiello, and R. Antony,
United Kingdom

Education is a vital component of care to improve the outcomes of patients with heart failure. Patients who are not knowledgeable about their disease and their medications are at a severe disadvantage, as reflected by higher rates of hospitalization and mortality. Patients should play an active role in the management of their health. Effective education of patients and their carers requires a multidisciplinary team approach and should emphasize adherence to treatment, lifestyle recommendations, and help the patient to recognize the symptoms and signs that indicate progression of the disease. This review discusses the approach to patient education, the possible obstacles to patient learning, and some strategies to help patients overcome these obstacles. It is likely that home telemonitoring systems will play a vital role in the management of heart failure and most other long-term medical conditions.

Medicographia. 2011;33:409-418 (see French abstract on page 418)

Rationale for patient education

If patients all had a personal nurse or physician to supervise them throughout each and every day then patient education would be unnecessary. Clearly this is not the case and, using conventional methods of delivering care, never can be for the vast majority of patients and interventions. In fact, one of the attractive aspects of implantable defibrillators, cardiac resynchronization, and potentially other devices for treating patients with heart failure is that once they have been successfully implanted the treatment is beyond the patients’ control.1 Implanted devices work 24 hours a day, 7 days per week, but can be largely forgotten by the patient. Indeed, it is probably good if patients do mostly forget that they have had a device implanted as this indicates good psychological adjustment and a lack of anxiety. However, for many aspects of heart failure management, patients need to be active participants in managing their disease to improve their quality of life, reduce the risk of hospitalization and to increase longevity. Clearly, if the medicine stays in the bottle it can’t do any good; even compliance with placebo is associated with improved outcomes—probably because it indicates that patients are taking their other medications and paying more attention to advice on lifestyle.2

In order for changes in diet, exercise, and pharmacological therapy to deliver benefits, patients have to know what they should do, be willing to do it, and then take action on their intentions. Appropriate advice and effective communication is required for the first task. The patient has to be persuaded that the advice is good and that any inconvenience, discomfort, loss of pleasure or perceived side effects are worth the potential gain. This implies either that patients know what is at stake, the size and nature of the expected benefit, and the rate and severity of potential risks, or that they trust the advice they receive and don’t question it. Clearly this is complex even for those who feel well, have full cognitive function, and are motivated, educated, and intelligent. Patients may receive advice, but remain skeptical about it. Alternatively, patients may make a choice not to give up “bad” habits, such as cigarettes or excess alcohol, in order to live a little longer, but prefer to live the remainder of their life as they wish. Health professionals are there to offer advice and support, but should not apply excessive coercion if the patient doesn’t want to take the advice proffered. If the patients do decide to follow advice, then they must have a plan to implement what they intend to do. There are many distractions, and daily routines are easily disrupted or forgotten. It is to the immense credit of patients, and those who care for them, that so many patients regularly take their medication. The extent to which they are aware of and comply with lifestyle advice is less clear.3 Once patients become knowledgeable and confident about the management of their heart failure, the sense of mastery may contribute to greater well-being and better outcomes.4

The educational strategy

The most important aspects of education are timing, hierarchy, content, repetition, consistency, motivation, implementation, and, finally, audit.

Timing is critical. It is important that patients are given a basic understanding as soon as possible that there is a problem with the heart and that the consequences of this can be reduced or prevented by adhering to advice and therapy. However, it is important that patients receive information at a rate they can absorb and cope with. This will vary considerably among patients. Too much education too quickly can be a bad thing. Denial of disease is an important coping mechanism for many patients. Ill-judged attempts at getting patients to understand the enormity of their problems can cause depression and despair. Unless the health professional has the skills (most don’t) to deal with the consequences of full disclosure, then considerable caution is appropriate when informing patients with heart failure about their prognosis.5-7 However, not making patients aware of the gravity of their disease can have serious consequences if it leads them to decide to stop treatment because of a minor side effect or not to follow advice on changes in lifestyle.

There should be a hierarchy of information with three important considerations in mind. The first consideration is context. Patients who have had a recent episode of worsening heart failure because they forgot their diuretics first need advice about diuretic compliance and investigation of the reasons for noncompliance, which might include lack of planning leading to them running out of tablets, denial of disease, cognitive dysfunction, or avoidance because of the social inconvenience of diuresis. The second consideration is about the size of impact the intervention will have on medical aspects of disease. In this sense, advice about angiotensin-converting enzyme (ACE) inhibitors and β-blockers, which have proven, substantial, and consistent benefits on symptoms and prognosis, is much more important than information about dietary sodium, adjustment of which has not been shown to be of benefit and could even be harmful,8 and exercise, which may improve psychological outlook, but has little or no effect in reducing either hospitalization or death.9,10 The third consideration is the patients’ mastery of their disease, in other words being confident in knowing what to do.11,12 Building confidence can mean supporting patients in doing things that they believe to be beneficial, as long as they are not harmful, in order to give a greater sense of control over their own life. This might include eating a well-balanced diet and regular exercise, neither of which is really known to have any direct benefit on the rate of hospitalization or longevity in patients with heart failure. In this sense, advice on diet and exercise may be as important as taking medication. Patients should not only be told which of their medications are known to be effective, but also those where doubt and controversy exist as they may wish to rationalize their regimen. The doctor or nurse can then add their personal opinion, but then leave the final decision with the patient.

The content is vital and should be based on professional guidelines adapted for patients’ needs. For most patients education will be delivered by a variety of media. An initial dialogue with a health professional, reinforced periodically, is the expected contemporary standard of care. However, patients often get confused by the volume of information, and therefore reinforcement with paper and electronic educational as well as practical aids such as weekly pill dispensers may make valuable additions to conventional care. The huge advantage of paper and electronic media is that patients can access it as often as they wish and discuss it with friends and family providing that vital component of education: repetition.

Paper and electronic media should also ensure consistency that should be reinforced by advice from health professionals. Patient information material and health professionals should be consistent in making clear what is evidence and what is opinion. There is no doubt that most patients with heart failure and a low left ventricular ejection fraction should receive an ACE inhibitor, a β-blocker, and an aldosterone antagonist. These are facts, not opinions, and the patient should receive a consistent message. On the other hand, there is no evidence that aspirin13-15 or statins16,17 are beneficial in patients with heart failure and coronary disease, but there are widely held opinions that such patients should take these medications. Thus, patients should be advised that aspirin and statins have not been shown to be effective and that the balance of harm and benefit is uncertain. Health professionals may then give their opinion on the balance of evidence without introducing dogma. If patients know what is fact and what is opinion then they are less likely to be confused by conflicting advice and can decide which advice to follow.

Table I
Table I. Key points a doctor needs to monitor in a patient with heart failure.

Abbreviation: CRT, cardiac resynchronization therapy.

Ensuring that patients not only know what to do, but are motivated to do it is critical. Education of patients has improved greatly in the last few decades, but it is unclear whether motivation to act on education has. This has proved difficult to measure. Patients have a surprising number of ways of misunderstanding advice and should be encouraged to discuss any concerns. Implementation is best assessed by audit. It is also good practice to evaluate what patients have understood. Standard questionnaires have been developed to assess patients’ educational attainment about heart failure management.18 It should be routine at each clinic visit to go through a patient’s medication.

Telemonitoring and education

Education alone does not help patients nor will monitoring of their disease. It is the benefits of changes in mood, lifestyle, medication, and device therapy that education and monitoring help deliver that improve outcome.19 However, lack of sufficient sophistication in either education or monitoring puts the patient at risk. These activities go hand in hand and should reinforce each other. There are a relatively small number of key things, probably about ten, that a doctor or nurse needs to monitor in order to advise patients about the requirement for further intervention or adjustments to their medications (Table I). Frequent monitoring of these symptoms and signs by conventional clinical follow-up is expensive and sufficient health care resources do not exist. However, home telemonitoring is already able to do most of what is required, efficiently and cost-effectively.20-22 The last elements required, such as measurement of serum potassium, renal function, and hematocrit should soon be available. Once these are in place, the care of heart failure and many other long-term conditions will be transformed. Expert systems will be able to work with patients to monitor their condition and provide education, motivation, advice, and audit without the frequent intercession of a health-professional.23 This will start slowly at first, probably just providing advice and motivation on diet, exercise, and diuretic dosing, but within a few years this will extend to other aspects of therapy. Doubtless, these new technologies will reveal some Luddite tendencies in the profession since such systems will be perceived to usurp some of the role of doctors and nurses.4 Health professionals will still be needed to provide backup and support. Indeed, it is quite likely that telemonitoring will not reduce staffing levels, but rather make existing staff more effective. Think of telemonitoring as a form of radar that can be used to maintain order and to prevent or detect health crises. In fact, telemonitoring is far better used to maintain patients in a safe “envelope” using a health maintenance strategy than as a means of spotting deterioration that might lead to hospitalization requiring special intervention (a crisis detection strategy) due to the problems of false alerts.19 Despite some recent negative publicity based around remote monitoring using voice-interactive systems,24,25 there is compelling evidence that telemonitoring reduces mortality substantially.22 Telemonitoring might also reduce the rate of hospitalization, but this is less certain.23 Telemonitoring may increase the rate of appropriate and timely hospitalization that could be life-saving.

Table II
Table II. Selected, larger randomized controlled heart failure trials of disease management or intervention.

Figure 1
Figure 1. An example of an integrated nurse-based service for the support of patients
with heart failure.

NT-proBNP ( amino-terminal pro-brain natriuretic peptide) is a useful screening, diagnostic and prognostic
test for cardiac dysfunction.

Figure 2
Figure 2. Telemonitoring has the potential to support patient self-management and
enable greater autonomy of patients from nursing and medical supervision (19, 23).

Evidence for education

Clearly, some level of education is required for patients with heart failure to survive at all. Robust evidence that enhanced levels of education improve outcomes is lacking, but this may reflect the failure of the educational programs rather than a failure of the concept (Table II, and Table III page 414 & 415).9,10,26-50 Indeed, the major problem in studies of patient education may be the effectiveness of education in the control group that will often be higher than in usual clinical practice.

There is good evidence that patients who take treatment as advised do better, even when that treatment is a placebo.2 This may reflect the fact that if patients comply with placebo they also comply with other aspects of care. It is also possible that sicker patients with greater comorbidity are less likely to comply and therefore poor outcome and poor compliance are associated, but not cause and effect. Another possibility is that patients who comply are more optimistic and less depressed and that these psychological profiles are themselves associated with a better outcome. Patients rely on doctors and nurses to communicate advice effectively. However, patients are individuals and will have very different personal needs not only in terms of what they need to do and what is going to happen to them, but also how much they want to understand the reasons for the advice. Moreover, patients will differ in how they want to receive advice. Although health professionals often think they provide sufficient advice to patients, it is clear that patients often don’t recall what they have been told. For some patients, understanding the reasons for the advice will help, but for other patients it will just be more things to remember. Ultimately, flexible, easily accessible educational systems that create a dialogue with patients, preferably linked to a telemonitoring system that can help identify the patients’ educational needs and ensure that professional support is available when needed are likely to be the most successful strategy.

Practical implementation

The main problems with implementing patient education are in identifying the patients, identifying their needs, and repeatedly delivering a consistent educational message with limited specialized resources. The strategy being developed in Kingston-upon-Hull is as follows (Figures 1 and 2):

_ Family physicians are encouraged to measure plasma Nterminal pro–brain natriuretic peptide (NT-proBNP) as a routine part of the annual follow-up of patients with ischemic heart disease or diabetes mellitus and for any patient taking a loop diuretic or any other patient thought to have or be at high risk of heart failure or major cardiac dysfunction. Patients with values <200 ng/L are reassured, patients with values between 200-400 ng/L are kept under review, and patients with values >400 ng/L are referred to a heart failure specialist clinic for evaluation or, if serum creatinine is grossly elevated, to a renal clinic.

Table III
Table III. Systematic reviews of heart failure management interventions and programs.

Table III

_ Patients admitted to hospital with heart failure (about 800 patients per year) or prescribed a loop diuretic (about 2500 per year) for any reason other than renal failure have plasma concentrations of NT-proBNP checked. Most of these patients are managed on upwards of 40 different general medical or surgical wards, which renders coordinated care difficult. Those with elevated values are reviewed by one of a small team of heart failure specialist “discharge-liaison” nurses that ensure that appropriate investigations are done and that those with confirmed heart failure receive specialist input.
_ All patients with confirmed heart failure are considered for home telemonitoring, with priority given to those considered unstable and at high risk of hospitalization or death. A new generation of systems is being developed through the Heart- Cycle Program (FP7-216695; European Union 7th Framework Program).19,23 Home telemonitoring systems link the patient’s television with equipment to monitor weight, blood pressure, and heart rate and rhythm. Patients are asked to complete questions on their television screens about symptoms and get questions to check that they know how to contribute to their personal management. They are then advised which educational videos they should watch, but can select from a whole variety. The system paces the patient’s education, but patients can choose to go faster and can repeat educational sessions as often as they wish and with friends and relatives. Patients are encouraged to get into a regular 15-minutemorning habit of telemonitoring activities. Patients are remarkably compliant and successful once they know what to do. The provision of feedback in terms of trend charts for weight and blood pressure gets patients much more engaged with their care. New motivational programs and sensors will make the technology more and more efficient and effective. The development of therapeutic algorithms allows patients to make many decisions about the need for repeat measurements of weight or blood pressure, changes in medication, and the timing of blood tests. The system and the patient can deal with up to 70% of the issues generated by conventional telemonitoring systems, relieving health professionals from a substantial workload, which greatly improves work efficiency and effectiveness.
_ A telemonitoring nurse, supported by the “discharge-liaison” nurses, provides daily support for up to 250 telemonitored patients. The system deals with about 70% of issues such as out-of-range measurements and need to adjust dietary sodium, diuretic dosage, and titration of ACE inhibitors and β-blockers. It also provides advice and support to health professionals. The aim is to maintain the patient in an ideal symptomatic and hemodynamic range that, compared with a strategy of crisis detection and management, is much more likely to modify the natural history of disease favorably. The system also sifts the data received to identify patients that are running into trouble and that require intervention from a health professional. Stable patients may only require a health professional to review telemonitoring data once every 6 to 8 weeks.
_ A small team of heart failure specialist community nurses can be directed by the telemonitoring nurse to patients that are running into trouble and require additional support.
_ Community volunteers provide an extra layer of support. Older patients sometimes require more coaching with the equipment and some even require help to make measurements. With a modest amount of training, the voluntary sector can assist some of the most frail and vulnerable patients to benefit from telemonitoring.
_ Currently, patients are offered 4 months of telemonitoring. At that time they are reevaluated. Patients who are considered still unstable or at high risk of events are offered a further 4-month cycle. Patients who are stable are offered the choice of whether to continue or not. About 10% of patients have poor compliance with tests, and telemonitoring is usually withdrawn from these patients after discussion with a specialist nurse who has identified no obvious remediable action that could improve engagement.

In conclusion, patients themselves are a huge potential health care resource that has not been tapped into as yet. The future is home telemonitoring and electronic patient records for those who have chronic disease who wish to have the best chance of improving their quality and quantity of life. Clearly, some will disagree—mainly those who don’t have a severe chronic illness and perceive technology to be intrusive and impersonal. From patients with serious illnesses, who often feel lonely and frightened, the recurrent theme is that they feel like these technologies are their “guardian angel” and their “lifeline.” Rather than isolating patients, they draw them back into society. Patient education and support need to be maintained throughout the patient’s life as withdrawal of support appears associated with adverse outcomes.51,52 _

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Keywords: heart failure; patient education; systematic review