Enlisting the Help of the Largest Health Care Workforce—Patients

Treatment of heart failure is complex, requiring attention to diet, lifestyle, complex therapeutic regimens, device therapy, and sometimes surgery.¹ Some clinical trials have demonstrated improved outcomes for patients with heart failure, in part, by selecting a relatively homogeneous, educated group of patients and ensuring that they are well informed and supervised. In clinical practice, patients are more heterogeneous, treatment is often more complex, and supervision less well resourced. Many patients have difficulty adopting complex care regimens and adherence to evidence-based regimens remains low, although this may be as much a failure of physicians to prescribe as of patients to adhere. Facilitating a more active role for patients in self-management of long-term medical conditions is not just a public relations exercise; it is an increasingly essential component of good clinical care.

Ultimately, patients are the largest health care workforce available. Investing in patients to give them the knowledge, confidence, and tools that enable them to become an effective and reliable workforce will be essential to maintain, and hopefully improve, the quality of care for most long-term illnesses. Enhanced long-term patient support by organizations that offer expert evaluation and advice reduces the morbidity and mortality associated with heart failure.^{2 - 3} The debate is no longer whether such support should be provided but rather how can it be delivered and what should be included in the package.

Providing information alone does not appreciably improve patients' confidence to carry out self-care nor decrease hospital readmissions.^{4 - 5} Tailoring educational content and reminder strategies (eg, programmable alarm devices, pill boxes) has been more successful in improving outcomes, but ensuring long-term adherence has proven difficult.^{6 - 7} Nonetheless, patients actively involved in the management of their disease have better outcomes.⁸ Even adherence to placebo is associated with a lower mortality rate, probably because adherence is a marker of other life choices that lead to better outcomes.⁹ In a study describing communication between physicians and patients with heart failure, a clear discrepancy in perceptions was found.¹⁰ The patients understood the information about the treatment but needed guidance on implementation. Physicians, on the other hand, thought that the patients' nonadherence to the treatment plan was attributable to their inability to understand instructions.¹⁰

In this issue of JAMA, Powell and colleagues¹¹ address the need for both education and improved self-management for patients with chronic heart failure in a clinical trial. Education focused on medication adherence, sudden weight gain, sodium restriction, moderate physical activity, and stress. Self-management included self-monitoring, environmental restructuring, getting support from family and friends, cognitive restructuring, and the relaxation response. The study screened 3154 patients and enrolled 902 over 3 years in 10 hospitals serving a population in excess of 3 million persons and therefore presumably more than 30 000 patients with heart failure. This was a highly selected population.

Overall, self-management counseling was of no added benefit in reducing the primary end point of death or heart failure hospitalization, although the trial was not powered to show small differences, and a statistically nonsignificant benefit was observed in the subgroup of lower-income patients. The effect on hospitalization for heart failure was also neutral, but there was a statistically nonsignificant lower death rate with self-management counseling (event rate, 0.21) compared with education (event rate, 0.24).

Patient education and self-management are not the same, but they are intimately related.^{12 - 13} One explanation for the neutral result might be that the control group received telephone calls to ensure that they had understood the information they were sent. It is possible that this intervention precipitated a dialogue that strayed into the realms of self-management. Another possibility is that the highly selected study participants were more motivated and therefore more inclined to better self-management in response to minimal intervention, such as a telephone call.

The difficulty in defining the motivational intervention based on Bandura's self-efficacy theory¹³ makes such intervention difficult to evaluate, because such an intervention may seem similar to patient education and in practice may turn out to be just that. A detailed description of the precise definitions and practical implementation of the components of self-management treatment used would be a rich source of knowledge and facilitate future research. Self-management is often used to refer either to an increase in the individual patient's knowledge and confidence in managing his or her health or to specific tasks relating to illness. Self-efficacy is defined as the belief that an individual can successfully execute the behavior required to produce a specific outcome—in other words, patients' confidence in their ability to cope. Prior personal experience appears to be a key factor. Therefore, convincing patients that a certain behavior will lead to a desirable outcome will not lead to behavioral change unless they believe that they can do it. Patients may believe that regular exercise will improve health but may decide not to exercise because they believe they are unlikely to succeed. Effective patient self-management needs to address patients' confidence in their ability to perform specific activities rather than just convincing them of the value of such activities.¹⁴

Interventions aimed at changing an individual patient's behavior should take into account the patient's perception of the illness, which forms the basis for a dialogue between 2 experts—the patient living with the disease and the professional with knowledge about the disease. From a patient's perspective this dialogue is often unique, providing new knowledge and answering specific questions for the first time. However, for the health professional, this is often a repetitive activity. Ensuring a consistent and complete message while preventing the health professional from becoming less attentive over months and years is problematic.

In the study by Powell et al,¹¹ eighteen 2-hour group meetings were spread out over the course of 1 year at considerable cost and inconvenience to the patients. Ultimately, electronic media, rather than in-person meetings with nurses and physicians, may become the predominant method of delivering health information, ensuring implementation of advice and treatment and sending motivational messages efficiently and effectively. This will need the support of health professionals for the foreseeable future to introduce patients to the programs and to identify patients who are outside the expected patterns of disease or behavior. The repertoire of such electronic strategies most likely will increase with experience. Home telemonitoring is a natural extension of this strategy, allowing patients to send information to clinicians about symptoms, weight, heart rate and rhythm, and blood pressure from their homes on a daily or weekly basis.^{2 - 3} Telemonitoring increases the uptake of therapy and reduces mortality.¹⁵ These systems can provide information and motivational messages—for example, by using video messaging and interactive television—supported by but not primarily delivered by a health professional.

Why is the increase of these technologies inevitable? There is an increasing burden of disease in an aging population with increasing expectations of what health care should deliver. Patients are more sophisticated in their use of technology and often seek medical information from books, journal articles, and the Internet. Cultural attitudes are also changing. Health professionals now offer more advice and less certainty, even though treatments are more likely to be effective. Patients are more likely to question the knowledge and advice of the health professional. However, while the amount of medical information is increasing rapidly, most patients and health professionals can process only a limited amount of information. This will be exacerbated by the introduction of new technologies, such as home telemonitoring, that create a high volume of information that will require analytical decision-support systems to be useful and efficient.

Using new technologies to empower patients who have long-term medical conditions such as heart failure may motivate them to take a more active role in their own health care and may promote adherence to treatment. Additional rigorous studies, building on the results reported by Powell et al,¹¹ may prove useful in unlocking a vast health care resource—patients. The medical and nursing professions should be a catalyst to this revolution.