Therapeutic education: which tool for whom?

Head, Therapeutic Patient Education Department
“School of the Heart Team”
Heart Failure Unit
Paris Descartes University

Therapeutic education: which tool for whom?

Interview with P. Jourdain, France

Improving patient competencies through therapeutic education of patients, relatives, and caregivers is a key point in heart failure (HF) management. It can be considered the first step toward a real partnership between health care professionals and patients. Despite all guidelines, recommendations, and convincing evidence, HF therapeutic education is rarely implemented, which may contribute in large part to the inefficacy of therapy and the overuse of emergency department facilities by poorly involved and -informed patients. In real life, it is difficult to improve patient self-management because of its dependency on patient willingness and due to the lack of time that health care professionals in most countries can invest in such an endeavor. However, HF therapeutic education tools are very useful, helping doctors, nurses, dieticians, and physiotherapists to quickly develop patients’ skills and competencies that improve life with the disease. This is especially pertinent in HF, due to the 5- day delay between the emergence of clinical signs and hospital admission in the majority of patients. Such tools should be flexible and adaptable to the health care professional and patient type, with different tools possibly more suitable for different situations. Such tools should not be stressing, but realistic, fostering autonomy in patients and their relatives. Some tools already exist, helping nurses and doctors train patients in difficult environments while facing time constraints. Try these tools or create your own to help your patients improve their everyday life with chronic HF.

Medicographia. 2015;37:193-196 (see French abstract on page 196)

In heart failure today, what are some of the challenges to optimal management?

Heart failure (HF) is a severe chronic condition. Management of chronic HF implies an adaptation of daily life, salt consumption, and physical activity and also involves many different medications. Furthermore, there are many issues that contribute to the nonoptimal HF management seen in real life. Some are patient related, involving for example therapy adherence or comorbidities, and some are doctor related, such as medical inertia.

Compliance with medical therapy is crucial to therapy effectiveness, as shown in a post hoc analysis of the CHARM study (Candesartan in Heart failure: Assessment of Reduction in Mortality and morbidity). In this study, poor compliance, defined as the intake of less than 80% of prescribed protocol therapy, was associated with an increase in risk of death or HF rehospitalization. Poor compliance is common in real life, especially in the oldest patients with many comorbidities and more than 5 different therapies. The difference between prescribed therapy and actual intake of therapy is often underestimated by doctors, despite the number of publications attesting to this discrepancy. This is particularly well analyzed in non–insulin-dependent diabetic patients. In those patients, a study determined that patients receiving a combination of 2 drugs (sulfamid and metformin) received only 266 days of therapy per year. This lack of compliance is comparable in chronic severe cardiac diseases such as myocardial infarction and HF. For example, 1 month after acute myocardial infarction, one-third of the patients have stopped at least 1 of the recommended BASI therapies (β-blockers, aspirin, statins, and angiotensin-converting enzyme inhibitors).

What influences compliance with medical therapy and how can it be improved?

Determinants of compliance differ greatly from patient to patient. Some are related to the therapy itself: form, taste, texture, name of medication, and side effects (real or not). Some are related to the patient: social and financial autonomy, dementia, perception of the disease and the usefulness of medical therapy, clinical evidence of usefulness, etc. Some are related to doctors: level of support of therapy (strong or weak) and the link between pharmacist and doctor. Compliance is mainly based on the confidence among doctors, pharmacists, and patients and is mandatory for an effective medical therapy. Considering optimal therapy to mean 100% compliance, a mean compliance higher than 80% is acceptable according to most publications. Improving compliance is a crucial, but difficult, target in everyday practice. The first step is to systematically analyze compliance during the medical visit. Rather than asking directly, it is more effective to ask patients indirectly how they analyze the impact of their therapy, what they are doing to avoid forgetting to take their tablets, etc. Most of the tools proposed to patients are based on tablet boxes and on connected tablet boxes (eg, they can ring phones to send reminders, are connected to the Internet, or can send e-mails to relatives), an approach to medical therapy focusing on close surveillance, which can seem intrusive. Though the short-term impact may be positive, the advantage in the long term is questionable.

Are there other ways to improve HF management through active involvement of the patient?

Indeed, compliance is not the lone determinant of patients’ involvement in their own medical disease management. While compliance is mandatory, it is in itself insufficient. The concept of therapeutic patient education (TPE) includes an improvement in patient knowledge and in patient involvement in follow-up (identification of symptoms; identification of warning signs; analysis of usual biochemistry results, eg, renal function, natremia, kalemia, and sometimes natriuretic peptides). However, the crucial point is the patient’s capacity to be involved in self-management. This self-management can be split into 2 different dimensions. One is more focused on patient ability to identify the risk of decompensation (analyzing clinical signs) and to contact the general practitioner or the cardiologist rather than going later on to the emergency department. The second dimension is focused more on selfmedication and adaptation of diuretic therapy, which diabetics are doing with insulin. Involving patients not only in regards to compliance with medical therapy, but also in everyday follow- up or management is crucial and substantially changes the relationship between patients and doctors. This cooperation implies that the patient takes on the role of equal partner and is no longer only a patient, signifying that the patient and relatives can play an active role in daily follow-up.

How do we reach this “partnership” between patient and health care professional?

In order to obtain this “holy grail,” it is first necessary to train patients and to improve their reactivity, not only their knowledge. Take as an example, the driving of a car. To be able to drive that car, one must first learn the road code. However, that isn’t enough to drive safely; the driver must practice and learn to adapt trajectory and speed to the environment. In HF, patients need to adapt their alimentation and their reactions to the disease, their clinical signs, and to the health resources available. TPE regroups all these concepts and has proven its effectiveness to limit hospitalization, duration of stay, and even all-cause mortality in meta-analysis and in real-life analysis in France. European Society of Cardiology (ESC) guidelines and US guidelines recommend to the highest degree multidisciplinary TPE due to it’s impact on patient health and on health resource expenditures. Despite all guidelines and evidence-based medicine, TPE is actually only carried out with few patients in real life (eg, estimated to be 5% in France) and is highly dependent on the motivation of local health professionals, thus not implemented equally in all places. Some specific tools are already in existence and are extremely useful to encourage doctors and nurses and to provide support to local teams and patient associations.

What are the important characteristics of these kinds of tools?

TPE tools or systems should be:
Simple. The system should be easily understood by health care professionals. Its concept and use should be as near as possible to what is familiar in usual practice and not require long and complex explanations.

Adaptive. The system should be adaptable to all medical practices. In some countries, it could be used by nurses and doctors outside usual practice sites. Also, a high percentage of the population in some countries may not be fluent readers and so the tool should avoid long and complex chapters. Similarly, the systems should be adapted to the key messages used by the user center as opposed to focusing solely on guidelines. The system should also be in the native language.

Useful. The system should be easy to use in many centers and focus on the key points of HF. The messages should be chosen by the medical teams and could emphasize specific objectives (eg, self-adjustment of diuretics). Furthermore, the system should undergo regular evaluation by the medical team.

Educative. The system should aim to usher patients from a role of simple patient to that of key partner, leading them to take an active part in their medical management. To do this, the focus must not rest only on improving knowledge, but on reactivity as well.

Flexible (In terms of health care expenditure). If the system is managed by the patients themselves, its degree of complexity is more important than the time involved; however, if the medical team is involved, the system should use as little medical and nursing time as possible due to health systems restrictions. The system should be flexible in terms of time consumption and rooms used. Depending on the country, this could concern hospitals only or hospitals and outpatient settings. A very complex and strict system may be used in studies, but would be difficult to use in real life.

What type of tool or system is best for different situations?

The type of tool depends on the goal defined at the beginning of the educational process, be it improving compliance, knowledge, or self-management.

Improving compliance. For this goal, we have 2 main options. One focuses on patient follow-up and is related to warning systems (eg, connected watch, smartphones, short message service [SMS], e-mails), but could be based on nonnumeric systems (eg, sticky notes, a diary, posters on the fridge). The second one focuses more on patient motivation and is based on the patient’s perception of the benefit/risk ratio of taking his/her tablets. Remember that from a patient’s point of view, a side effect is certain and has a short-term perspective, while therapy benefit is uncertain and has a longterm perspective. TPE improves compliance and motivates the patients to take all their medical therapy during all their life. Proactive patients could themselves indicate their compliance, using simple declarative tools (eg, on a smartphone, similar to patient medical passports). It is easy to estimate patient motivation in the first month using this type of tool, but it is difficult to maintain this kind of self-estimation every day for years.

Improving knowledge. Information for patients is sometimes scarce and leads to extensive use of the Internet in search of “clear” information about their disease or lifestyle modifications it imposes. However, they may also find confusing or false information in this manner. The more we provide correct and useful information about daily life with their disease, the less inclined patients will be to search for it elsewhere. Specific Internet sites focusing on specific diseases are interesting solutions, but require the patient to access these Internet sites. Another promising solution is the development of specific applications that send daily text messages to a patient’s smartphone. One such application is “MyHF,” which relays key messages based on real preoccupations of patients. If doctors are aware of these solutions, they might find them helpful to relay information from the doctor or pharmacist to the patient.

Improving self-management. This is considered the main target, because it is the main objective behind equipping the patient with information. When the patient is not only informed, but also reactive and involved in his/her follow-up with the optimization of lifestyle and the awareness of what to do in case of the most frequent warning signs or complications, the patient becomes a real “nonmedical” partner.

Changing patient competencies and not only improving patient knowledge is the main objective of TPE. TPE involves a multidisciplinary team—including nurses, dieticians, doctors, and sometimes a physiotherapist—and it needs time. In real life, few patients benefit from TPE (less than 5% in France, for example), despite its being highly recommended in all international guidelines. The 2 mandatory elements are (i) an educational diagnostic at the beginning of TPE in order to adapt the program to the patient’s current knowledge and perception of the disease and to the therapy and (ii) the setting of a common goal, together with the patient, for the next visit (improvement of lifestyle, improvement in ability to identify warning signs, improvement of follow-up, etc). Aside from these 2 elements there are different tools that could be helpful. Some focus on serious games (Internet, apps, gamepads, etc). These serious games appear to be dynamic, are “reallife” based and interactive, but are costly and have low flexibility for the patients. Some focus on “real-life” clinical cases or may be board games like the HF toolbox game now avail- able in 32 countries with the help of a Servier partnership. These are more adaptive to the entire spectrum of patient ages and available health care resources (no need for Internet or computer access). This is particularly pertinent in HF due to the old age of patients (≈78 years old in Europe). The tools have to adapt to the patient, not vice versa.

Who should TPE be offered to and when?

Information should be given to all patients and their relatives regardless of age and social status. TPE is crucial at the beginning of the disease especially for less-involved or -informed patients. Using relaying tools like the MyHF app or using diaries could be helpful to maintain patient motivation and compliance. The tools should be adapted to a patient’s limitations (visual, hearing, age, comorbidities, etc), but all patients except those that refuse should be included in local or national self-management programs.

Any final comments on incorporating TPE into HF management?

To sum up, optimal management of HF should include TPE to improve patient knowledge, compliance, and reactivity, and such initiatives are enhanced using adapted tools. These tools have to be flexible and adjusted to each patient’s level of motivation, beliefs, and limitations. All these tools should be adapted to local key messages and health care resources. These tools already exist and could support the deployment of education programs. Therapeutic education is not simply education, but is intrinsically a therapeutic act, which we propose to the patient as we would medical therapy or device treatment. Indeed, TPE is changing how patients see themselves: from obedient patients to active lifelong partners. It is also changing the doctor’s relation with the patient, with the doctor becoming an ever more attentive caregiver. ■

Keywords: compliance; heart failure; knowledge; self-management; therapeutic patient education