Heart failure self-management

INTRODUCTION — Heart failure (HF) is one of the most common causes of hospitalization, hospital readmission, and death. Due to the complexity and long-term nature of HF regimens, the need for careful diet and weight management, and the importance of intervention in the early phases of decompensation, patient self-management is crucial in avoiding hospitalizations [1,2]. Unfortunately, many patients lack self-care skills [3,4].

This topic will review evidence for the value of self-management and strategies for educating patients about self-management of HF. The medical management of HF and treatment for acute decompensation are discussed separately (see "Treatment of acute decompensated heart failure: General considerations" and "Treatment of acute decompensated heart failure in acute coronary syndromes"). Strategies for avoiding hospitalization are also discussed separately. (See "Systems-based strategies to reduce hospitalizations in patients with heart failure".)

MAGNITUDE OF THE PROBLEM — Approximately six million adult Americans are living with HF, and prevalence is expected to rise by 46 percent by 2030 [5]. The lifetime risk of HF from age 45 to 95 is between 20 and 45 percent [5]. In 2018, there were approximately 1.2 million hospitalizations for HF [5], with an incidence of 11.6 hospitalizations per 1000 for people aged 55 years or over, making HF among the leading causes of hospitalization in this age group [5]. Furthermore, in 2016, 21.7 percent of patients over age 64 who were hospitalized with HF were readmitted within 30 days [6].

Chronic HF care requires patients to follow complex medical regimens, comply with diet and exercise recommendations, actively engage with clinicians, and modify medications and behavior according to symptoms. This "self-care" is quite complex. Standard HF medical regimens often include at minimum three distinct classes of medications, some of which may be taken multiple times a day. In addition, patients are expected to restrict salt intake, monitor their weight daily, be able to identify early warning signs of deterioration, and adjust diuretic use according to clinical changes. Patients and caregivers may find these activities difficult to perform without education and support.

BENEFIT OF SELF-MANAGEMENT INTERVENTIONS — Improved self-management skills may reduce the odds of HF-related hospitalization by 20 percent [4]. Thus, assisting patients to manage their own care is an essential component of chronic HF management.

Most studies of self-management intervention in patients with HF have been multifaceted disease-management interventions that included interventions in addition to self-management education and promotion. Consequently, it is difficult to distinguish effects of self-management from other components of these complex interventions. They are also context dependent, and it is not clear how generalizable they are.

Some studies have focused exclusively on improving self-care. The Quality HF-Diabetes randomized controlled trial was designed to improve self-care in patients with both HF and diabetes. This trial demonstrated improved overall quality of life [7] and fewer hospitalization days, and was cost-effective [8]. However, only 134 subjects were enrolled (70 in the intervention arm) out of 741 screened, raising concerns about the generalizability of the intervention to the broader population. The MITI-HF randomized controlled trial of motivational interviewing among 67 patients demonstrated no significant effect on perceived self-care maintenance and confidence in the main analysis [9]. However, a different randomized nurse-delivered self-care intervention among 86 patients demonstrated improved medication adherence among intervention patients [10]. A later randomized trial of a telephone-based coping skills training program involving 180 patients with HF showed improvement in quality of life metrics but not hospitalization or death [11]. A trial of motivational interviewing to improve self-care in patients with HF (MOTIVATE-HF) found that this intervention could improve self-care, but clinical outcomes were not assessed [12].

In general, trials of long-term self-care education with frequent reinforcement have produced significant decreases in hospitalizations but no reduction in mortality. Longer duration interventions are more effective [13]. The results on hospitalization outcomes of some of the larger trials and meta-analyses of smaller trials of self-management and other disease management strategies are discussed separately. (See "Systems-based strategies to reduce hospitalizations in patients with heart failure".)

WHAT CONSTITUTES APPROPRIATE SELF-CARE? — Self-care for HF encompasses a spectrum of behaviors ranging from adherence to medication, exercise, and diet recommendations (self-care maintenance) to recognition of early warning signs, and self-adjustment of the home-care regimen (self-care management). Two tools to assess patients' self-care abilities have been validated: the Self Care of Heart Failure Index [14] and the European Heart Failure Self-care Behavior Scale (available in multiple languages) [15]. However, at present, neither is commonly used outside the research setting. While a variety of patient-level factors are associated with self-care behavior performance, the strongest evidence exists for depression, which interferes with self-care [16].

For patients with HF, the chief components of self-care programs are medication management, daily monitoring for signs/symptoms, and adherence to a low-sodium diet and routine exercise. These are discussed in detail below.

Medication management — Medication management is considered to be a cardinal self-care behavior. Evidence-based pharmacologic therapy (including a renin-angiotensin system inhibitor [an angiotensin converting enzyme inhibitor, angiotensin II receptor blocker, or angiotensin receptor-neprilysin inhibitor], beta blocker, and other agents as indicated) for HF with reduced ejection fraction has been shown to reduce hospitalization and mortality rates in randomized trials (see "Primary pharmacologic therapy for heart failure with reduced ejection fraction" and "Secondary pharmacologic therapy for heart failure with reduced ejection fraction"). However, for medications to be effective for prolonged periods outside the clinical trial setting, patients must have adequate medication-management skills.

A meta-analysis of medication adherence interventions found significant reduction in mortality among 48 trials (risk ratio [RR] 0.89, 95% CI 0.81-0.99) and in hospitalizations among 32 trials (RR 0.89, 95% CI 0.81-0.97) [17]. However, these interventions were heterogeneous and nearly all were components of broader multidimensional programs. For example, in a randomized trial of 314 low-income patients with HF, half of whom were given intensive education by a pharmacist about medication management, the intervention group had higher adherence (78.8 percent) than the control group (67.9 percent) and subsequently required fewer emergency and hospital visits (incidence rate ratio 0.82, 95% CI 0.73-0.93).

Self-care for medication management includes a wide variety of skills and practices:

●Obtaining initial and refill prescriptions

●Incorporating medication administration into the daily routine

●Adhering to the daily medication schedule

●Understanding and implementing prescription changes

●Recognizing common side effects of medications

●Managing changes of routine such as travel or acute illness

Self-care programs teach each of these skills, utilizing written, oral, graphic, video, and/or electronic tools [18]. An example of a medication-maintenance schedule geared for low-literacy patients is the discharge instruction packet developed at Boston University [19]. Other graphic aids to improve medication adherence have been developed at Emory University [20], the University of California, Los Angeles [21], and elsewhere. A medication-management tool to help low-literacy patients adjust medications based on weight has been developed at the University of North Carolina (figure 1) [22]. Mobile health (mHealth or m-health) technology applications to support medication adherence have exploded in number, although only a handful of studies have been conducted of efficacy among cardiovascular patients [23]; these studies generally show modest benefit. Automated pill dispensing systems are now widely available (eg, ePill). Finally, companies have developed at least two dozen "smart" pill containers to remind patients to take medications and/or inform clinicians about low adherence [24]. Overall, few comparative effectiveness trials have been conducted of any of these new technological assistance devices [25,26]. One four-arm randomized feasibility study of 60 patients with HF compared an electronic pillbox or a smartphone-based mHealth application with active reminders enabled with those without active reminders; there was no difference in adherence among the four arms [27], although there were only 15 patients in each arm. In fact, a large meta-analysis of all types of medication adherence interventions, involving 771 trials, found that interventions delivered via text message (28 trials) had similar effect sizes as those that did not, while computer-based interventions (14 trials) had significantly smaller effect sizes [18]. Interventions conducted face-to-face were the most effective. In fact, of the eight trials that were restricted to patients with HF, five improved medication adherence, none of which included technological devices [28].

Patient medication instructions

●To take each medication each day at the times indicated by using a system (list, pill box, etc.).

●Not to allow prescriptions to expire or bottles to become empty before refilling.

●To use the same pharmacy each time.

•To ask the pharmacy to synchronize refills, enabling medication refills all to be requested at the same time of the month.

●Not to skip doses, even when they are feeling well.

●To bring all their medications to each doctor’s visit.

●To contact their doctor immediately if they feel they are having side effects from medications, rather than stopping them without telling anyone.

●To discuss barriers to obtaining medications (such as cost difficulties) with the physician.

Instructions for patients able to perform medication management

●Which pill is their diuretic.

●How to change the dose of the diuretic according to the HF action plan.

●To carry out any additional changes that should accompany diuretic dose changes (eg, need for earlier refills, addition of potassium supplementation).

Patients who have been properly instructed to perform medication management should be able to demonstrate the ability to carry out these activities. A useful tool kit for clinicians seeking to improve medication adherence among their patients has been developed by the New York City Health Department and is freely available [29].

Daily monitoring of signs and symptoms — We recommend that patients collect information about their signs and symptoms and share this information with their clinicians, despite the limitations of this information as described below. The intent is to determine if there is a change in their condition in between office visits, giving the opportunity for early intervention. Meanwhile, there is a persistent need to identify optimal ways to leverage the data.

Self-care programs typically include the following suggestions for monitoring of signs and symptoms:

Daily weights

Patients should be instructed to:

●Use a scale with large enough print to be readily visible

●Use a scale that is big enough for the patient to stand on easily

●Use a scale that is easy to "zero," such as a digital scale

●Weigh themselves at the same time every morning

•After urinating but before eating or drinking

•Before getting dressed or in the same amount of clothing each day

●Record the results in a log book or other permanent record

●Compare results with previous day and with previous week

●Know their target weight

A reasonable plan might be that for a two- to five-pound weight gain in one week, diet/medication changes should be made as outlined in HF action plan; >5 pound weight gain in one week requires immediate call to the designated physician or nurse.

Daily check for edema

Patients should be instructed to:

●Examine their legs each day for swelling or an increase in existing swelling

●Describe how far up the leg the swelling reaches (ankle, shin, knee)

Worsening edema requires diet/medication changes as outlined on the HF action plan; severe swelling requires immediate call to the designated physician or nurse. It is not necessary to teach patients the classic edema scale (1+ to 4+ pitting), as even clinicians are unreliable in assigning scores to edema [30].

Measuring ankle circumference with a soft tape measure is a more reliable objective measure that is easy to teach patients if a quantitative measure is desired [30]. However, there are no data to show this is more effective than a subjective assessment of "worsening."

Daily check of symptom severity

Patients should perform the following checks daily:

●Monitor their exercise tolerance (eg, using a scale ranging from no shortness of breath, shortness of breath after moderate exertion, shortness of breath after mild exertion, shortness of breath at rest).

●Monitor their breathing at night (eg, using a scale ranging from no shortness of breath lying flat, needing two pillows or more, sleeping upright or awakening with sudden shortness of breath).

●Watch for dizziness or lightheadedness (eg, using a scale ranging from not dizzy, dizzy for a while after standing, near syncope/syncope or fall).

For each of these symptoms, patients should be instructed that the less-severe symptoms would require diet/medication modification as outlined in the HF action plan and the more severe symptoms would require an immediate call to the physician’s office. (See 'Heart failure action plan' below.)

Early identification of worsening clinical status through symptom monitoring may be helpful in avoiding hospitalization, but there remains substantial uncertainty on the most effective means of accomplishing this. Certain signs and symptoms often precede the need for further changes in clinical status that ultimately require hospitalization. For example, in a nested case-control study of 134 patients hospitalized for HF exacerbation and 134 similar patients who were not hospitalized, the relative odds ratio of hospitalization was 2.8 (95% CI 1.1-6.8) for a weight gain of >2 to 5 pounds versus 2 pounds or fewer in one week. For patients who gained >5 to 10 pounds in a week, the odds of hospitalization were 4.5 times those who gained 2 pounds or fewer (95% CI 1.5-13.8), and for those who gained more than 10 pounds, the relative odds were 7.6 (95% CI 2.2-26.4) [31]. However, in another study, a 5-pound weight gain was not associated with a higher risk of hospitalization, and dyspnea was a better predictor [32]. In another study, weight loss was associated with higher risk of readmission [33].

Of note, studies about exactly how symptom monitoring ought to be done, and the magnitude of the expected effect, are still lacking. An NIH-funded trial of telemonitoring in patients with HF failed to improve clinical outcomes, including hospitalization [34]. However, a later study showed a modest improvement in health status [35]. Similar to medication management, symptom monitoring is an area that is seeing substantial growth in mHealth applications intended to support self-care, though again there is little-to-no high-quality evidence that these new technologies are effective [36]. In the end, the effectiveness of obtaining information about daily symptoms and signs may be determined by how that information is used, with the information being necessary but not sufficient for benefit.

Sodium restriction — Reducing dietary sodium may prevent volume overload. For ambulatory patients with HF, we counsel patients to adhere to a moderate restriction of sodium intake (ie, less than 3 g/day). For patients who choose to restrict their sodium intake, we refer the patient to a dietician for counseling and provide educational materials to help develop the following skills and knowledge [37] (see "Patient education: Low-sodium diet (The Basics)" and "Patient education: Low-sodium diet (Beyond the Basics)"):

●Understanding of relationship between sodium intake and edema

●Knowledge that sodium and "salt" are the same

●Ability to read a nutrition label

●Ability to calculate total sodium intake in a day

●Recognition of "hidden" sources of salt intake (eg, sauces/seasonings, canned goods, instant hot cereals)

The goal of education is for the patient to perform the following actions:

●Select low-salt foods and avoid high-salt foods (including processed meats and salted hot cereals)

●Reduce salt added during home cooking

●Ask for reduced-salt meals at restaurants and avoid known sources of salt

●Rinse canned goods before cooking and/or eating

●Avoid instant foods and salty snacks

However, many or most patients may not be able to truly adhere to a sodium-restricted diet [38].

The rationale for this approach is based on our experience that high sodium consumption (eg, >4 g/day) may be harmful and trial data showing that restriction of sodium to less than 2 g/day does not clearly reduce HF readmissions and may reduce caloric intake:

●In a trial that included 806 patients with HF, patients randomly assigned to a low sodium diet (less than 1.5 g/day) or to usual care had similar a similar rates of all-cause death (6 versus 4 percent in the usual care group; hazard ratio [HR] 1.38, 95% CI 0.73-2.60), cardiovascular-related hospitalization (10 versus 12 percent; HR 0.82, 95% CI 0.54-1.24), and cardiovascular-related emergency department visits (5 versus 4 percent) [39]. Compared with the usual care group, the low sodium group had similar weight and caloric consumption, which suggests that sodium restriction did not cause deterioration in nutritional status. One limitation of the trial was the relatively small difference in sodium consumption between the two groups (0.42 g/day), which may have biased the study toward a neutral result.

●In another trial of 53 patients who were hospitalized with HF and who were randomized to a sodium (0.8 g/day) and fluid (800 mL/day) restriction or to an unrestricted diet, weight loss was similar in both groups (1.6±2.2 kg versus 1.8±2.1 kg in the unrestricted diet group) as was the reduction in the congestion score (3.4±3.5 versus 3.8±3.4) [40]. However, the group assigned to the 0.8 g/day sodium-restricted diet had lower energy consumption.

●Another trial that included 232 patients with NYHA class II to IV HF who were taking high-dose oral furosemide, spironolactone, and who had their fluid intake restricted to 1 L/day found that patients randomly assigned to a sodium restriction of 2 g/day had a higher risk of readmission than patients assigned to a sodium restriction of 3 g/day (25 versus 8) [41].

●Systemic reviews have not come to any conclusion due to high risk of bias and differential reporting of the primary outcomes [42]; and two other systematic reviews were retracted [43,44].

The 2022 American Heart Association/American College of Cardiology/Heart Failure Society of America (AHA/ACC/HFSA) HF guidelines describe sodium restriction as reasonable for patients with AHA/ACC stage C HF but do not suggest a specific sodium restriction [45]. The 2021 European Society of Cardiology (ESC) HF guidelines suggest avoiding excessive salt intake (>5 g/day) [46].

The effects of sodium restriction on blood pressure in normotensive and hypertensive individuals are discussed separately. (See "Salt intake and hypertension", section on 'Effect of sodium on blood pressure'.)

Fluid restriction — For patients with refractory (stage D) HF or severe hyponatremia (serum sodium <120 mEq/L, symptoms attributable to hyponatremia), fluid restriction to less than 2 L/day is reasonable. [45]. (See "Hyponatremia in patients with heart failure", section on 'Treatment' and "Overview of the treatment of hyponatremia in adults", section on 'Fluid restriction'.)

The 2022 AHA/ACC/HFSA HF guidelines suggest fluid restriction (1.5 to 2 L/day) in patients with class D HF (especially with hyponatremia), but the recommendation is based on expert opinion [45]. A similar statement is included in the 2021 ESC HF guidelines [46].

The data suggest that fluid restriction may reduce hospitalizations:

●A review of four randomized controlled trials involving 678 patients found moderate evidence that fluid restriction of 1.5 to 2 L/day reduces hospitalizations (RR 0.58, 95% CI 0.47-0.70) but did not find support for reductions in mortality [47].

●A registry study reported that fluid restriction of hospitalized patients is the most common intervention, but has little effect on markers of hypervolemia such as hyponatremia [48].

Exercise — A number of clinical trials [49-54] have demonstrated improvements in quality of life with routine exercise in HF [55]. Some of the longer-term studies have also shown reduced hospitalization rates [56], though the largest, HF-ACTION, with 1159 enrolled patients, only showed improvements after adjustment for baseline characteristics [49]. Consequently, exercise training is a Class I recommendation for patients with Stage C HF in the 2022 AHA/ACC/HFSA HF guidelines [45]. These issues are discussed in detail separately. (See "Cardiac rehabilitation in patients with heart failure".)

Smoking cessation and alcohol use — We recommend smoking cessation for all patients with HF as part of HF self-care (see "Overview of smoking cessation management in adults"). In a systematic review, 16 percent of patients with HF persist in smoking. Current smoking is an independent predictor of mortality in patients with HF [57]. Continuing smoking was associated with a 38 percent higher mortality and a 45 percent higher rehospitalization rate. The 2010 HFSA guidelines recommend smoking cessation for all patients with HF [58].

We counsel patients to limit alcohol consumption to ≤1 standard drink per day. The 2010 HFSA guidelines specifically recommend that patients with HF be advised to limit alcohol consumption to ≤2 standard drinks per day for males or ≤1 standard drink per day for females (figure 2) [58]. (See "Alcohol-induced cardiomyopathy" and "Cardiovascular benefits and risks of moderate alcohol consumption", section on 'Heart failure'.)

OBSERVED RATES OF ADHERENCE — The existing literature on adherence to self-care behaviors in HF patients is limited to small trials with inconsistent methods (eg, definition and measurement of adherence). Nonetheless, patients do not typically engage in adequate self-care [3,59,60]. The evidence on self-care is composed of studies on the following:

●Medications – Published nonadherence rates to HF medications range from 2 to 90 percent due to inconsistent and subjective assessments [61]. The largest studies of HF medication adherence, which used reliable prescription refill data, show that on average patients have an adequate supply of a given medication at home 60 to 88 percent of the time [62-65]. Given the relatively short half-life of HF medications and the necessity for persistent adrenergic blocking, however, very high adherence rates are now thought to be necessary to achieve a clinically-significant reduction in adverse outcomes. One observational study found that 88 percent adherence or better was necessary for improved event-free survival [66]. However, observational studies of adherence may be confounded by healthy adherer effects, in which adherers do better even if they are taking placebo [67]. The longer the duration of therapy, the lower the adherence rate in terms of on-time refills [68]. Clinicians often fail to recognize when patients are not adhering to medications [69].

●Daily weights – Published adherence to daily weight measurement in randomized trials ranges from 20 to 80 percent [70]. However, it is probably much lower in the general population. In one observational study of 202 patients recently discharged after HF exacerbation, only 14 percent reported weighing themselves daily [60].

●Symptom monitoring – Symptom monitoring is among the least well-performed of HF self-care activities. In the study of 202 recently discharged HF patients, only 9 percent reported monitoring themselves for symptom changes [60].

●Exercise – Published estimates of patients who engage in no physical activity at all range from 9 to 53 percent [70]. Even in randomized trials, such as ACTION-HF, adherence was difficult to maintain over time. In that study, the intervention group engaged in a median of 50 minutes a week of exercise in the third year (relative to the training goal of 120 minutes a week) [49].

BARRIERS TO SELF-CARE — The reasons for inadequate self-care in the population at large as reflected by low adherence rates are multifactorial [71,72]. In addition to lack of knowledge, skills, or commitment, as outlined above, there are a variety of other barriers to self-care. These include socioeconomic factors, patient factors, treatment factors, and health care system factors. Clinicians must be aware of these impediments to self-care in order to maximize their patients’ ability to manage their disease. (See "Adherence to lipid-altering medications and recommended lifestyle changes" and "Patient adherence and the treatment of hypertension".)

Socioeconomic factors — To help reduce the impact of socioeconomic factors, clinicians should be aware of the costs of common medications, ask patients whether they can afford their medications, reduce the cost of medications (if possible), and make efforts to reduce the financial burden of self-care activities on their patients.

The high cost of evidence-based medications is a significant barrier to adherence [61,73,74]. Clinicians can help patients maintain adherence to medications by being sensitive to cost. The three classes of medications most recommended for HF patients are all available in generic form; several in each class are also deeply discounted at major retailers. Commonly-associated medications such as statins are also available at these discounted rates.

Financial barriers also play a role in behavioral change. Examples include lack of insurance coverage for pharmaceutical smoking-cessation aids; the expense of fresh fruits and vegetables compared with the low cost of sodium- and cholesterol-rich foods; and the inability of many patients to afford formal exercise programs or gym memberships. Many patients do not even own a scale.

Therapy-related factors — To overcome therapy-related barriers, clinicians should specifically query and counsel patients about common adverse effects of HF medications, ensure patients understand the potential benefits they can expect from their medications, maximize once daily formulations, and attempt to minimize pill quantity.

Side effects of medications are a major reason for noncompliance [61]. This has traditionally been considered particularly problematic for HF because both beta blockers and diuretics have been perceived to have high rates of side effects that patients may be reluctant to discuss, including impotence, mood dysfunction, and incontinence [75]. However, an analysis of 15 randomized controlled trials involving over 25,000 patients suggests that beta blocker therapy was not associated with a significant absolute annual increase in risk of reported depressive symptoms (6 per 1000 patients; 95% CI -7 to 19). Beta blocker treatment was associated with small increases in fatigue (18 per 1000 patients; 95% CI 5-30) and sexual dysfunction (5 per 1000 patients; 95% CI 2-8) [76].

It may, therefore, be helpful for clinicians to specifically counsel patients about the low likelihood of these effects. Likewise, it may help to counsel patients that frequent urination is a sign that medications are working, and that the volume of urination is likely to level off once a stable state has been reached.

More frequently dosed medications are less likely to be taken consistently; these formulations should be avoided whenever possible [61]. The number of daily pills is inversely correlated with adherence.

Patient factors — Patient factors play perhaps the greatest role in nonadherence to HF self-care. A study of older adult patients hospitalized for HF found that most were unable to perform tasks related to HF self-care [3]. Interestingly, self-perception of care was not highly correlated with the ability of individuals to perform the tasks. To address patient factors, clinicians should screen patients for depression, cognition, low health literacy, and social support challenges, and should tailor treatment regimens for individuals with multiple morbidities, in addition to promoting appropriate knowledge, skills, and patient engagement as described above.

Social support — Social support may be helpful in support of positive self-care behaviors, including medication adherence [77]. The quality of the literature is not strong, but several studies suggest that social support has a positive influence on self-care maintenance. Families, peers, and supportive relationships all seem to be contributory. (See "Office-based assessment of the older adult", section on 'Social and environmental assessment'.)

Low health literacy — A systematic review [78] and a 2004 report from the Institute of Medicine (IOM) [79] defined health literacy as follows: "The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions." Reading literacy is not synonymous with health literacy. For instance, while 71 percent of low-literacy patients in one study could read, "Take two tablets by mouth twice daily," only 35 percent could correctly identify how many pills a day they would take [80].

The impact of health literacy on outcomes was examined in a population-based study of 2487 patients with HF who completed a health literacy survey; 10.1 percent had low health literacy [81]. After a mean of 15.5 months of follow-up, there were 250 deaths and 1584 hospitalizations. Low health literacy was associated with higher mortality rate (adjusted hazard ratio [HR] 1.91, 95% CI 1.38-2.65) and hospitalization (adjusted HR 1.30, 95% CI 1.02-1.66) compared with adequate health literacy. Other observational studies have also found an association between low health literacy and rates of mortality and/or hospitalization in patients with HF [82-85].

Low health literacy is a key component of adherence to behavioral changes as well as to medications: For example, the ability to recognize changes in weights and then appropriately self-adjust diuretic dose or call the physician requires substantial health literacy. However, when self-care education is appropriately targeted to health literacy level, patients with low health literacy can achieve the same benefit from self-care as those with high health literacy [22]. A trial that tested an empowerment-based educational intervention in a group setting found improvements in symptom perception and self-care [86].

A 2010 consensus statement from the Heart Failure Society of America proposed five steps for health care providers to address low health literacy [87]:

●Step 1 – Recognize that health literacy is real and may compromise patient care.

●Step 2 – Identify patients at risk for low health literacy.

●Step 3 – Formally screen patients who are at risk: Several health literacy measurement tools exist to rapidly screen patients for low health literacy in the outpatient setting [88].

●Step 4 – Document health literacy levels and learning preferences in patient records.

●Step 5 – Integrate strategies to facilitate to facilitate health understanding.

Multimorbidity — Patients with multiple chronic illnesses face additional physical, cognitive, and functional challenges to effective self-care. Approximately one-quarter to one-half of patients with HF have cognitive impairment, and geriatric conditions are common [89]. Patients with cognitive impairment [90-92], in particular, may have difficulty conducting self-care activities [93]. Moreover, these patients are more likely to have multiple clinicians and receive confusing or conflicting recommendations. The average Medicare patient with HF sees 15 providers a year. Patients with HF have larger and more complex therapeutic, self-monitoring, and behavioral requirements. The presence of one condition may complicate treatment for others, as, for instance, aspirin in a patient with coronary artery disease, a history of gastrointestinal bleeding, and HF (for which the risks and benefits of aspirin are uncertain) (see "Drugs that should be avoided or used with caution in patients with heart failure", section on 'Aspirin'). Yet, evidence from clinical trials provides limited guidance for treatment of patient with multiple chronic conditions.

Depression and anxiety — Depression and anxiety are highly prevalent among HF patients [94,95]. These comorbidities impair self-care ability through a variety of means, including effects on cognition, function, social support, motivation, and engagement [96]. Patients with depression and HF have higher rates of medication nonadherence [97], hospitalization, and mortality [98]. Brief screens for depression in the outpatient setting have been validated and can be readily used in the clinic [99]. The role of other interventions is unclear. For example, in a recent trial in patients with HF, cognitive behavior therapy reduced the severity of depression but did not improve measures of self-care. [100].

Health care team/system factors — A host of system-related factors makes self-care education challenging. Clinicians, especially in the outpatient setting, are often ill-equipped to provide self-care education, monitoring, and reinforcement. They may lack the skills and/or time to provide such education. Ancillary resources, such as nurse educators, pharmacists, informational materials, or registries to identify at-risk patients, may not be available. Commercial payers and Medicare rarely reimburse for counseling, follow-up, and monitoring. Self-care education makes up only a tiny fraction of recommended quality metrics. Finally, clinicians must coordinate with an extraordinary range of other clinicians: The typical primary care provider is expected to coordinate with 229 other clinicians in 117 practices to manage his/her patient panel [101].

PROMOTING EFFECTIVE SELF-CARE — Successful self-care requires a knowledgeable, engaged, and committed patient with supportive caregivers, family and friends, embedded in a health care system and environment that facilitates self-management. Efforts to promote effective self-care should include a focus on three main areas: Knowledge, skills, and behavior change/engagement. There is increasing use of telemonitoring and mobile apps to promote self-management, but these strategies are still in early phases of testing [102-110].

Knowledge — Multiple studies have shown that patients with HF are unable to describe their medication regimen, do not recognize symptoms of worsening HF, do not know how much sodium they should be ingesting, and have a variety of misconceptions about HF etiology, prognosis, and management [3,96,111-116]. These knowledge deficits impair patients’ ability to engage in effective self-care. Patient retention and understanding of factual content can be increased by using a few validated techniques for adult education [117]:

●Utilize teach-back techniques to ensure the patient understands the materials (that is, ask the patient to "teach" the educator the information he/she has just received).

●Ask specific questions to ensure the patient understands the materials; do not just say, "Do you understand?" or "Do you have any questions?"

●Limit teaching points to no more than three or four per session.

●Repeat, reinforce, and review teaching points at regular intervals.

Skill development — Although knowledge is an important component of self-care, it is insufficient on its own. Many patients know facts about HF self-management (eg, "I should avoid salt") without having any corresponding skills to carry out that knowledge (eg, ability to read nutrition labels, identify high-salt foods in restaurants, etc). A list of the numerous skills patients must master to effectively manage their own care is presented above. (See 'What constitutes appropriate self-care?' above.)

A few educational techniques may help to improve skill acquisition:

●Experiential learning (eg, have a patient read a prescription label and take out the correct amount of medication, calculate the amount of salt in a food product, or sort foods into high- and low-sodium categories).

●Role playing (eg, have a patient practice a conversation describing worsening symptoms to a health care provider).

●Group sessions – Group visits allow patients to learn from the experience of other, similarly-situated patients.

Behavior change and patient engagement — Most importantly, knowledge and skills are ineffective without patient engagement. Beliefs about treatment efficacy, for example, are an important predictor of adherence [59,118]. Patients who do not believe a treatment will be effective are unlikely to pursue the treatment no matter what their knowledge and skills. Similarly, recommendations and practices "imposed" by the physician or educator without patient involvement are less likely to be successful than ideas generated by patients themselves in collaboration with their care providers. Patients whose personal goals are incompatible with self-care regimens are unlikely to adhere [119]. Clinicians and educators can increase patient involvement in and engagement with their care in the following ways:

●Using motivational interviewing techniques [120-122]. (See "Overview of psychotherapies", section on 'Motivational interviewing'.)

●Questioning patients explicitly about their beliefs in disease etiology and efficacy of treatment.

●Questioning patients explicitly about their life goals and tying self-care regimens to the achievement of these goals.

●Engaging patients in developing a plan, and in filling out a notebook or monitoring materials.

●Using brainstorming with patients to help them incorporate self-management into their lives: build on patients’ own experience and routines.

●Helping patients identify one or two concrete actions they can do for each aspect of self-care (goal setting) [123].

●Having patients describe their self-management practices and offering feedback to improve them, rather than suggesting or imposing self-management practices.

HEART FAILURE ACTION PLAN — The major components of HF self-care can be summarized in terms of a HF action plan. A HF action plan is divided into green, yellow, orange, and red zones corresponding to a stable state, worsening status, acute exacerbation, and cardiac emergency. The action plan includes a customized response plan for each state that is developed by the clinician in tandem with the patient (figure 3 and figure 4). For most patients, symptoms in the yellow zone would require additional diuretic intake and renewed vigilance to diet and medication compliance. Symptoms in the orange zone should prompt an immediate call to the physician and rapid evaluation. Symptoms in the red zone should prompt a call for an ambulance. All patients should receive an HF action plan customized to their condition and abilities for self-care.

The 2010 Heart Failure Society of America guidelines recommend that patients have an HF action plan as a component of education and counseling focusing on self-care [58].

SOCIETY GUIDELINE LINKS — Links to society and government-sponsored guidelines from selected countries and regions around the world are provided separately. (See "Society guideline links: Heart failure in adults".)

INFORMATION FOR PATIENTS — UpToDate offers two types of patient education materials, "The Basics" and "Beyond the Basics." The Basics patient education pieces are written in plain language, at the 5^th to 6^th grade reading level, and they answer the four or five key questions a patient might have about a given condition. These articles are best for patients who want a general overview and who prefer short, easy-to-read materials. Beyond the Basics patient education pieces are longer, more sophisticated, and more detailed. These articles are written at the 10^th to 12^th grade reading level and are best for patients who want in-depth information and are comfortable with some medical jargon.

Here are the patient education articles that are relevant to this topic. We encourage you to print or e-mail these topics to your patients. (You can also locate patient education articles on a variety of subjects by searching on "patient info" and the keyword(s) of interest.)

●Basics topics (see "Patient education: Heart failure (The Basics)" and "Patient education: Medicines for heart failure with reduced ejection fraction (The Basics)" and "Patient education: Coping with high drug prices (The Basics)")

●Beyond the Basics topic (see "Patient education: Heart failure (Beyond the Basics)" and "Patient education: Coping with high prescription drug prices in the United States (Beyond the Basics)")

SUMMARY AND RECOMMENDATIONS

●Specific self-care activities

•Medication adherence and adjustment – Medication management is considered to be a cardinal self-care behavior. (See 'Medication management' above.)

•Daily symptom monitoring – We counsel all patients to collect information about their signs and symptoms of HF and share this information with their clinicians. (See 'Daily monitoring of signs and symptoms' above.)

•Sodium restriction – For ambulatory patients with HF, we counsel the patient to adhere to a moderate restriction of sodium intake (ie, less than 3 g/day). (See 'Sodium restriction' above.)

•Fluid restriction – For patients with refractory (stage D) HF or severe hyponatremia (serum sodium <120 mEq/L, symptoms attributable to hyponatremia), fluid restriction to less than 2 L/day is reasonable. (See 'Fluid restriction' above.)

•Smoking cessation and alcohol use – We recommend smoking cessation for all patients with HF and counsel patients to limit their alcohol use as part of HF self-care (See 'Smoking cessation and alcohol use' above.)

•HF action plans – All patients should receive an HF action plan detailing how they should respond to changes in clinical condition. (See 'Heart failure action plan' above.)

ACKNOWLEDGMENT — The UpToDate editorial staff acknowledges Leora Horwitz, MD, MHS, who contributed to earlier versions of this topic review.