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Heart failure self-management

Heart failure self-management
Authors:
Leora Horwitz, MD, MHS
Harlan Krumholz, MD
Section Editor:
Sharon A Hunt, MD
Deputy Editor:
Todd F Dardas, MD, MS
Literature review current through: Feb 2022. | This topic last updated: Aug 06, 2020.

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]. Unfortunately, many patients lack self-care skills [2,3].

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 6.2 million adult Americans are living with HF, and prevalence is expected to rise 46 percent by 2030 [4]. The lifetime risk of HF from age 45 to 95 is between 20 and 45 percent [4]. Every year in the United States, there are approximately 800,000 hospitalizations for HF [4], 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 [4]. Furthermore, in 2016, 21.7 percent of patients over age 64 who were hospitalized with HF were readmitted within 30 days [5].

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.

The consequences of inadequate self-care are profound. Inability to manage medications or diet may account for as many as one in five admissions for HF [6].

BENEFIT OF SELF-MANAGEMENT INTERVENTIONS — Improved self-management skills may reduce the odds of readmission at one year by 40 percent [1]. 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 impedes 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 "Initial pharmacologic therapy of heart failure with reduced ejection fraction in adults" and "Secondary pharmacologic therapy in heart failure with reduced ejection fraction (HFrEF) in adults"). 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 (ie, 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].

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 [33]. However, a later study showed a modest improvement in health status [34]. 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 [35]. 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 — Sodium restriction has been commonly recommended in patients with acute or chronic HF, although the optimum sodium intake for patients with HF is not known, given the limited evidence that is available [36-38]. As a result, there is a controversy in this area [39-41]. Nevertheless, based on expert opinion and limited evidence, we advise our patients with HF to restrict sodium intake to less than 3 g/day. This level of sodium restriction is likely sufficient for most patients with HF, and there is limited evidence of harm with more restrictive sodium intake. The 2013 American College of Cardiology/American Heart Association (ACC/AHA) HF guidelines suggest some degree (eg, <3 g/day) of sodium restriction in patients with symptomatic HF [36]. The 2016 European Society of Cardiology (ESC) HF guidelines suggest avoiding excessive salt intake (>6 g/day) [37]. (See "Patient education: Low-sodium diet (Beyond the Basics)".)

Randomized trials of low-sodium intake in patients with HF have produced inconsistent results [42-48], and two systematic reviews of clinical trials have been retracted [49,50]. There are no clinical trials demonstrating a benefit of a low-sodium (2 g) diet in HF. In prospective observational studies, outpatients with moderate-severe HF (New York Heart Association [NYHA] class III or IV) (table 1) ingesting >3 g sodium daily had significantly shorter times to hospitalization or death than those ingesting 2 to 3 g daily, with hazard ratios [HRs] of 2 to 2.5 [43,45]. A study of a low-sodium (2 g) diet compared with a 3 g sodium diet in 232 patients with NYHA class II to IV HF on high-dose oral furosemide, spironolactone, and 1 L fluid restriction found harm from the low-sodium diet: 7.6 percent readmission rate after 180 days on 3 g sodium diet versus 26.3 percent on 2 g sodium diet [44]. Although this study has been criticized for its unusually high dose of furosemide (250 to 500 mg twice daily) that was not altered even on the low-sodium diet, similar findings have been reported in observational data in patients with mild-moderate disease. A retrospective analysis of data on 902 patients with chronic ambulatory NYHA functional class II or III HF who were enrolled in the HF Adherence and Retention Trial compared outcomes in those with daily sodium intakes of <2500 mg/day (restricted sodium intake) versus ≥2500 mg/day (unrestricted sodium intake) [51]. The restricted sodium group had a higher risk of death or HF hospitalization, raising the possibility that sodium restriction exerts a detrimental effect. Although the observational nature of this study precludes cause-and-effect conclusions, it highlights the need for further study of the optimal approach to sodium restriction. One study found that, of 134 patients with NYHA class I or II HF, those who restricted sodium to <2 g had an HR of 3.68 for time to hospitalization or death versus those taking 2 to 3 g of sodium daily [43].

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

Adherence to a low-sodium diet requires the following knowledge and skills:

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 (ie, sauces/seasonings, canned goods, instant hot cereals)

Self-care programs teach each of these skills, utilizing written, oral, graphic, video, and/or electronic tools. For example, the North Carolina Program on Health Literacy has developed a low-literacy-appropriate HF pamphlet that provides these lessons in pictorial format [52].

In addition to education about the knowledge and skills described above, patients should be instructed 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 follow these diets [53].

Fluid restriction — We suggest fluid restriction (eg, 1.5 to 2 L/day) only in patients with refractory (stage D, class IV) HF or symptomatic or severe hyponatremia (serum sodium <120 meq/L) [36]. (See "Hyponatremia in patients with heart failure", section on 'Treatment' and "Overview of the treatment of hyponatremia in adults", section on 'Fluid restriction'.)

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 [54]. A registry reported that fluid restriction of hospitalized patients is the most common intervention and yet did not have much effect on hyponatremia [55]. The 2013 ACC/AHA 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 [36]. A similar statement is included in the 2016 ESC HF guidelines [37].

Hyponatremia is common among HF patients, and the degree of reduction in serum sodium parallels the severity of the HF. As a result, a low serum sodium is an adverse prognostic indicator. Most HF patients with hyponatremia have volume overload, rather than volume depletion.

Exercise — A number of clinical trials [56-61] have demonstrated improvements in quality of life with routine exercise in HF [62]. Some of the longer-term studies have also shown reduced hospitalization rates [63], though the largest, HF-ACTION, with 1159 enrolled patients, only showed improvements after adjustment for baseline characteristics [56]. Consequently, exercise training is a Class I recommendation in the 2013 ACCF/AHA HF guidelines. As noted in the 2010 Heart Failure Society of America (HFSA) guidelines, patients with HF should undergo exercise testing to determine suitability (absence of significant ischemia or arrhythmias) prior to exercise training [64]. These issues are discussed in detail separately. (See "Cardiac rehabilitation in patients with heart failure".)

Smoking cessation and alcohol use — Current smoking is an independent predictor of mortality in patients with HF [65]. In a systematic review, 16 percent of patients with HF persist in smoking. Continuing smoking was associated with a 38 percent higher mortality and a 45 percent higher rehospitalization rate. Smoking cessation is therefore an important part of HF self-care and should be encouraged in all patients with HF who are active smokers (see "Overview of smoking cessation management in adults"). The 2010 HFSA guidelines recommend smoking cessation for all patients with HF [64].

Although the 2013 ACCF/AHA guidelines recommend only that patients be counseled about alcohol use, the 2010 HFSA guidelines specifically recommend that patients with HF be advised to limit alcohol consumption to ≤2 standard drinks per day in men or ≤1 standard drink per day in women (figure 2) [64]. (See "Alcohol-induced cardiomyopathy" and "Cardiovascular benefits and risks of moderate alcohol consumption", section on 'Heart failure'.)

OBSERVED RATES OF ADHERENCE — Existing literature on adherence to self-care behaviors in HF patients is limited by inconsistent methods of defining and assessing adherence and study of limited populations in small trials. Nonetheless, it is clear that patients do not typically engage in adequate self-care [2,3].

Medications – Published nonadherence rates to HF medications range from 2 to 90 percent due to inconsistent and subjective assessments [66]. 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 [67-70]. 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 [71]. However, observational studies of adherence may be confounded by healthy adherer effects, in which adherers do better even if they are taking placebo [72]. The longer the duration of therapy, the lower the adherence rate in terms of on-time refills [73]. Clinicians often fail to recognize when patients are not adhering to medications [74].

Daily weights – Published adherence to daily weight measurement in randomized trials ranges from 20 to 80 percent [75]. 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 [3].

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 [3].

Exercise – Published estimates of patients who engage in no physical activity at all range from 9 to 53 percent [75]. 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) [56].

BARRIERS TO SELF-CARE — The reasons for inadequate self-care in the population at large as reflected by low adherence rates are multifactorial [76,77]. 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.

Medication cost is a significant barrier to adherence [66]. Clinicians can help patients maintain adherence to medications by being sensitive to cost. The three classes of medications most commonly 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 [66]. 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 [78]. 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) [79].

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 [66]. 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 [80]. 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 [81]. 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 [82] and a 2004 report from the Institute of Medicine (IOM) [83] 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 [84].

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 [85]. 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 [86-89].

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 2010 consensus statement from the Heart Failure Society of America (HFSA) proposed five steps for health care providers to address low health literacy [90]:

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 [91].

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 [92]. Patients with cognitive impairment [93-95], in particular, may have difficulty conducting self-care activities [96]. 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 [97,98]. These comorbidities impair self-care ability through a variety of means, including effects on cognition, function, social support, motivation, and engagement [99]. Patients with depression and HF have higher rates of medication nonadherence [100], hospitalization, and mortality [101]. Brief screens for depression in the outpatient setting have been validated and can be readily used in the clinic [102].

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 [103].

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. In particular, 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 [104-110].

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 [99,111-116]. 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 (ie, "I should avoid salt") without having any corresponding skills to carry out that knowledge (ie, 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 (ie, 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 (ie, 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/patient engagement — Most importantly, knowledge and skills are ineffective without patient engagement. Beliefs about treatment efficacy, for example, are an important predictor of adherence [2,118]. 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 [64].

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 5th to 6th 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 10th to 12th 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 drug prices (Beyond the Basics)")

SUMMARY AND RECOMMENDATIONS

Clinicians can promote effective self-care by patients with heart failure (HF) by ensuring that patients have the knowledge, skills and engagement to appropriately carry out self-care activities. (See 'What constitutes appropriate self-care?' above.)

Knowledge should be taught using techniques such as teach-back and repetition.

Skills should be taught using techniques such as experiential learning.

Beliefs and engagement should be encouraged using techniques such as motivational interviewing and patient-directed behavioral strategies.

Patients with HF should be specifically instructed in the following self-care activities (see 'What constitutes appropriate self-care?' above):

Medication maintenance (for all patients).

Medication management (for patients who are able to demonstrate sufficient knowledge and skills).

Daily monitoring for signs/symptoms (for all patients).

Adherence to a 3 g sodium diet (for all patients).

Smoking cessation and limited alcohol consumption.

For patients with refractory (stage D) HF or symptomatic or severe hyponatremia (serum sodium <120 meq/L), fluid restriction (eg, 1.5 to 2 L/day).

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

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Topic 13607 Version 24.0

References

1 : Effects of self-management intervention on health outcomes of patients with heart failure: a systematic review of randomized controlled trials.

2 : Compliance in heart failure patients: the importance of knowledge and beliefs.

3 : Vulnerabilities of patients recovering from an exacerbation of chronic heart failure.

4 : Heart Disease and Stroke Statistics-2020 Update: A Report From the American Heart Association.

5 : Post-discharge acute care and outcomes following readmission reduction initiatives: national retrospective cohort study of Medicare beneficiaries in the United States.

6 : Factors contributing to the hospitalization of patients with congestive heart failure.

7 : Randomized clinical trial of an integrated self-care intervention for persons with heart failure and diabetes: quality of life and physical functioning outcomes.

8 : An economic evaluation of a self-care intervention in persons with heart failure and diabetes.

9 : Effect of teaching motivational interviewing via communication coaching on clinician and patient satisfaction in primary care and pediatric obesity-focused offices.

10 : Results of the Chronic Heart Failure Intervention to Improve MEdication Adherence study: A randomized intervention in high-risk patients.

11 : Effects of Coping Skills Training on Quality of Life, Disease Biomarkers, and Clinical Outcomes in Patients With Heart Failure: A Randomized Clinical Trial.

12 : Motivational interviewing to improve self-care in heart failure patients (MOTIVATE-HF): a randomized controlled trial.

13 : What Are Effective Program Characteristics of Self-Management Interventions in Patients With Heart Failure? An Individual Patient Data Meta-analysis.

14 : An update on the self-care of heart failure index.

15 : The European Heart Failure Self-care Behaviour scale revised into a nine-item scale (EHFScB-9): a reliable and valid international instrument.

16 : Factors related to self-care behaviours in heart failure: A systematic review of European Heart Failure Self-Care Behaviour Scale studies.

17 : Medication Adherence Interventions Improve Heart Failure Mortality and Readmission Rates: Systematic Review and Meta-Analysis of Controlled Trials.

18 : Medication adherence outcomes of 771 intervention trials: Systematic review and meta-analysis.

19 : Medication adherence outcomes of 771 intervention trials: Systematic review and meta-analysis.

20 : Development of an illustrated medication schedule as a low-literacy patient education tool.

21 : A low-literacy medication education tool for safety-net hospital patients.

22 : A heart failure self-management program for patients of all literacy levels: a randomized, controlled trial [ISRCTN11535170].

23 : The role of mHealth for improving medication adherence in patients with cardiovascular disease: a systematic review.

24 : The role of mHealth for improving medication adherence in patients with cardiovascular disease: a systematic review.

25 : Interventions to improve adherence to self-administered medications for chronic diseases in the United States: a systematic review.

26 : A Spanish pillbox app for elderly patients taking multiple medications: randomized controlled trial.

27 : Randomized controlled feasibility trial of two telemedicine medication reminder systems for older adults with heart failure.

28 : Medication Adherence Interventions for Older Adults With Heart Failure: A Systematic Review.

29 : Medication Adherence Interventions for Older Adults With Heart Failure: A Systematic Review.

30 : Reliability and feasibility of methods to quantitatively assess peripheral edema.

31 : Patterns of weight change preceding hospitalization for heart failure.

32 : Rapid 5 lb weight gain is not associated with readmission in patients with heart failure.

33 : Telemonitoring in patients with heart failure.

34 : Impact of Telemonitoring on Health Status.

35 : Gerontechnologies for Older Patients with Heart Failure: What is the Role of Smartphones, Tablets, and Remote Monitoring Devices in Improving Symptom Monitoring and Self-Care Management?

36 : 2013 ACCF/AHA guideline for the management of heart failure: a report of the American College of Cardiology Foundation/American Heart Association Task Force on practice guidelines.

37 : 2016 ESC Guidelines for the diagnosis and treatment of acute and chronic heart failure: The Task Force for the diagnosis and treatment of acute and chronic heart failure of the European Society of Cardiology (ESC)Developed with the special contribution of the Heart Failure Association (HFA) of the ESC.

38 : Aggressive fluid and sodium restriction in decompensated heart failure with preserved ejection fraction: Results from a randomized clinical trial.

39 : Salt, No Salt, or Less Salt for Patients With Heart Failure?

40 : Sodium Restriction in Heart Failure: Too Much Uncertainty-Do the Trials.

41 : Reduced Salt Intake for Heart Failure: A Systematic Review.

42 : A high-sodium diet is associated with acute decompensated heart failure in ambulatory heart failure patients: a prospective follow-up study.

43 : Dietary sodium restriction below 2 g per day predicted shorter event-free survival in patients with mild heart failure.

44 : Normal-sodium diet compared with low-sodium diet in compensated congestive heart failure: is sodium an old enemy or a new friend?

45 : Three gram sodium intake is associated with longer event-free survival only in patients with advanced heart failure.

46 : Do low sodium diets reduce the morbidity and mortality in patients with congestive heart failure?

47 : The long-term effects of dietary sodium restriction on clinical outcomes in patients with heart failure. The SODIUM-HF (Study of Dietary Intervention Under 100 mmol in Heart Failure): a pilot study.

48 : Salt in the diet in patients with heart failure: what to recommend.

49 : WITHDRAWN: Reduced dietary salt for the prevention of cardiovascular disease.

50 : Retraction. Low sodium versus normal sodium diets in systolic heart failure: systematic review and meta-analysis. Heart. Published Online First: 21 August 2012 doi:10.1136/heartjnl-2012-302337.

51 : Impact of Dietary Sodium Restriction on Heart Failure Outcomes.

52 : Impact of Dietary Sodium Restriction on Heart Failure Outcomes.

53 : Dietary sodium adherence is poor in chronic heart failure patients.

54 : Is fluid restriction needed in heart failure?

55 : Current Management of Hyponatremia in Acute Heart Failure: A Report From the Hyponatremia Registry for Patients With Euvolemic and Hypervolemic Hyponatremia (HN Registry).

56 : Efficacy and safety of exercise training in patients with chronic heart failure: HF-ACTION randomized controlled trial.

57 : Randomized, controlled trial of long-term moderate exercise training in chronic heart failure: effects on functional capacity, quality of life, and clinical outcome.

58 : High-intensity interval training is effective and superior to moderate continuous training in patients with heart failure with preserved ejection fraction: A randomized clinical trial.

59 : Cost-effectiveness of exercise therapy in patients with coronary heart disease, chronic heart failure and associated risk factors: A systematic review of economic evaluations of randomized clinical trials.

60 : Exercise-based cardiac rehabilitation for adults with heart failure.

61 : Improving exercise capacity and quality of life using non-invasive heart failure treatments: evidence from clinical trials.

62 : Exercise-based rehabilitation for heart failure.

63 : 10-year exercise training in chronic heart failure: a randomized controlled trial.

64 : Nonpharmacologic management and health care maintenance in patients with chronic heart failure.

65 : Association between persistent smoking after a diagnosis of heart failure and adverse health outcomes: A systematic review and meta-analysis.

66 : Medication adherence in patients who have heart failure: a review of the literature.

67 : Outpatient utilization of angiotensin-converting enzyme inhibitors among heart failure patients after hospital discharge.

68 : Prescription drug coverage, health, and medication acquisition among seniors with one or more chronic conditions.

69 : Compliance with and dosing of angiotensin-converting-enzyme inhibitors before and after hospitalization.

70 : Changes in adherence to evidence-based medications in the first year after initial hospitalization for heart failure: observational cohort study from 1994 to 2003.

71 : Defining an evidence-based cutpoint for medication adherence in heart failure.

72 : A meta-analysis of the association between adherence to drug therapy and mortality.

73 : Adherence to medication.

74 : The rational clinical examination. Is this patient taking the treatment as prescribed?

75 : What do we know about adherence and self-care?

76 : The Contribution of Living Arrangements, Social Support, and Self-efficacy to Self-management Behaviors Among Individuals With Heart Failure: A Path Analysis.

77 : Socio-clinical variables affecting the level of self-care in elderly patients with heart failure.

78 : Medical conditions, medications, and urinary incontinence. Analysis of a population-based survey.

79 : Beta-blocker therapy and symptoms of depression, fatigue, and sexual dysfunction.

80 : Most elderly patients hospitalized for heart failure lack the abilities needed to perform the tasks required for self-care: impact on outcomes.

81 : Social support and self-care behaviors in individuals with heart failure: an integrative review.

82 : The prevalence of limited health literacy.

83 : The prevalence of limited health literacy.

84 : Literacy and misunderstanding prescription drug labels.

85 : Health Literacy and Outcomes in Patients With Heart Failure: A Prospective Community Study.

86 : Health literacy and outcomes among patients with heart failure.

87 : Health Literacy: An Important Clinical Tool in Heart Failure.

88 : Literacy critical to heart failure management: a scoping review.

89 : Patient activation, knowledge, and health literacy association with self-management behaviors in persons with heart failure.

90 : Health literacy and the patient with heart failure--implications for patient care and research: a consensus statement of the Heart Failure Society of America.

91 : Rapid estimate of adult literacy in medicine: a shortened screening instrument.

92 : Geriatric conditions in heart failure.

93 : Cognitive impairment in older adults with heart failure: prevalence, documentation, and impact on outcomes.

94 : Prevalence and determinants of cognitive impairment in chronic heart failure patients.

95 : Cognitive impairment in heart failure: a systematic review of the literature.

96 : Predictors of heart failure self-care in patients who screened positive for mild cognitive impairment.

97 : Prevalence and predictors of anxiety and depression in a sample of chronic heart failure patients with left ventricular systolic dysfunction.

98 : Depression in heart failure a meta-analytic review of prevalence, intervention effects, and associations with clinical outcomes.

99 : State of the science: promoting self-care in persons with heart failure: a scientific statement from the American Heart Association.

100 : Difficulty taking medications, depression, and health status in heart failure patients.

101 : Depressive symptoms and outcomes in patients with heart failure: data from the COACH study.

102 : Detecting and monitoring depression with a two-item questionnaire (PHQ-2).

103 : Primary care physicians' links to other physicians through Medicare patients: the scope of care coordination.

104 : A Patient-Centered Mobile Phone App (iHeartU) With a Virtual Human Assistant for Self-Management of Heart Failure: Protocol for a Usability Assessment Study.

105 : Nurse-Led Collaborative Management Using Telemonitoring Improves Quality of Life and Prevention of Rehospitalization in Patients with Heart Failure.

106 : Assessment of Heart Failure Patients' Interest in Mobile Health Apps for Self-Care: Survey Study.

107 : A Smartphone App for Self-Management of Heart Failure in Older African Americans: Feasibility and Usability Study.

108 : Perceptions of Mobile Technology for Heart Failure Education and Self-Management Among Middle-Aged and Older Adults.

109 : Evaluation of Heart Failure Apps to Promote Self-Care: Systematic App Search.

110 : mHealth education interventions in heart failure.

111 : Heart failure patients' perceptions on nutrition and dietary adherence.

112 : Symptom perception in heart failure: a scoping review on definition, factors and instruments.

113 : Symptom perception in heart failure - Interventions and outcomes: A scoping review.

114 : Rationale for targeted self-management strategies for breathlessness in heart failure.

115 : Cluster randomized controlled trial testing the effectiveness of a self-management intervention using the teach-back method for people with heart failure.

116 : Using video education to improve outcomes in heart failure.

117 : Using video education to improve outcomes in heart failure.

118 : Adherence and perception of medication in patients with chronic heart failure during a five-year randomised trial.

119 : What matters to patients with heart failure? The influence of non-health-related goals on patient adherence to self-care management.

120 : MOTIVATional intErviewing to improve self-care in Heart Failure patients (MOTIVATE-HF): Study protocol of a three-arm multicenter randomized controlled trial.

121 : Motivational Interviewing as a Strategy to Impact Outcomes in Heart Failure Patients: A Systematic Review.

122 : Motivational Interviewing and Self-care Practices in Adult Patients With Heart Failure: A Systematic Review and Narrative Synthesis.

123 : Patient Commitment to Health (PACT-Health) in the Heart Failure Population: A Focus Group Study of an Active Communication Framework for Patient-Centered Health Behavior Change.