Heart Failure Reviews

https://doi.org/10.1007/s10741-020-09964-6

Literacy critical to heart failure management: a scoping review

Hiba Deek 1 & Leila Itani 2 & Patricia M. Davidson 3

# Springer Science+Business Media, LLC, part of Springer Nature 2020

Abstract
Heart failure is a complex clinical syndrome most commonly encountered among older adults. This complex clinical syndrome is
associated with poor health outcomes such as frequent admissions and mortality. These adverse outcomes are commonly
associated with poor self-care and lower health literacy. Literacy is a combination of knowledge and skills and often reflected
by appropriate interaction with the community, while health literacy is the cognitive and social skills reflected by accessing and
comprehending health information and making appropriate health decisions. These decisions are common and challenging to
patients with heart failure. Poor outcomes are said to be reduced by adequate self-care, which is associated with health literacy
among heart failure patients. Better self-care was also shown to be associated with self-efficacy and self-confidence that were in
turn associated with health literacy. Hence, enhancing health literacy among patient with heart failure is critical to enable them to
increase control over their disease by better understanding and participating in health care, while being empowered to take part in
designing health care services and even tailoring research to serve their needs and consequently improve outcome at the
individual and community level. In clinical practice, assessing health literacy, measuring health literacy, and identifying patients
at risk of low nutrition literacy is important to enhance health literacy and health outcomes. Hence, developing reliable and valid
methods and tools for assessment and developing tailored and targeted interventions is of critical importance.

Keywords Heart failure . Literacy . Health literacy . Self-care . Low- and middle-income countries

Introduction
Heart failure is a complex clinical syndrome characterized by
debilitating signs and symptoms that manifest due to structural
or functional damage to the heart muscle [47]. Over 26 million
people globally are affected with a projected 46% increase in
prevalence by 2030 [54], accounting for the new 670,000
cases diagnosed yearly in the United States (US) [3]. Heart
failure is more common among the older adult population as it
becomes more prevalent with aging to reach 10% among
* Hiba Deek
h.deek@bau.edu.lb
Patricia M. Davidson
pdavidson@jhu.edu
1
Nursing Department, Faculty of Health Sciences, Beirut Arab
University, P.O. Box: 11 5020, Beirut, Lebanon
2
Nutrition & Dietetics Department, Faculty of Health Sciences, Beirut
Arab University, Beirut, Lebanon
3
Johns Hopkins School of Nursing, 525 N. Wolfe Street,
Baltimore, MD 21205, USA
those aged more than 70 years. Heart failure is the leading
cause of hospitalization in developed countries [3]. It is caus-
ing up to 40,000 hospitalization in developing countries [50]
accounting for 2.2% of the total hospital admissions [12]. This
complex syndrome is also associated with high readmission
rates reaching 30% within 60 to 90 days post discharge [3]. In-
hospital death reached 10% [50], and the overall mortality is
higher in low- and middle-income countries when compared
to high-income countries [66]. The 1-year mortality reached
24% in Europe and Mediterranean countries [54] and up to
34% in countries of low-income status. The vast variations in
mortality rates are due to the healthcare infrastructure, quality
of care and accessibility, and environmental factors [22].
There are also likely sociodemographic factors, such as liter-
acy, contributing to adverse health outcomes. Additionally,
heart failure is responsible for high cost of care, accounting
for up to 31 billion dollars in the US [54] for in and out of the
hospital care.
Self-care in heart failure has been shown to reduce the
incidence of poor outcomes such as readmissions and mortal-
ity, and improve quality of life [51]. However, this varies
between different patients from different backgrounds.
Factors that were identified as necessary for the optimal

performance of self-care were knowledge and experience
[30]. However, a main element to self-care was health literacy,
which was said to be independently associated with self-care.
Literacy and health literacy in the general
population
Literacy is defined as the combination of knowledge and skills
necessary to acquaint and succeed in society, home, work, and
the health care system. It is associated with the person’s edu-
cation level, and is reflected by community interactions, and
occupational and health status [16]. Low-level literacy is a
common finding among adults and even more common
among older adults. This is true in the US [18] and globally
where one in five adults were reported to be illiterate [60]
estimating to a total of 781 million adults [13]. The impact
of low literacy on health outcomes has been investigated in a
number of studies. A review [5] showed that higher literacy
levels were significantly associated with knowledge about
cervical cancer screening and mammography, informed con-
sents, and emergency department (ED) discharge instructions.
Higher literacy was also associated with increased knowledge
on smoking, contraception, and common diseases such as di-
abetes and hypertension [5]. Lower literacy, on the other hand,
was associated with higher rates of smoking [24]. It was also
found that adults with low literacy levels were 1.5 to 3 times
more likely to experience a poor health outcomes [21].
Health literacy, on the other hand, is when the acquired
knowledge is translated into skills that promote one’s
wellbeing such as reading medical prescriptions and
comprehending consent forms and health information provid-
ed by health care providers. Additionally, heath literacy is the
ability to make wise decisions related to one’s health [16]. A
broader definition of health literacy is that provided by
Nutbeam [45]: “Health literacy represents the cognitive and
social skills which determine the motivation and ability of
individuals to gain access to, understand and use information
in ways which promote and maintain good health”[45].
It was noted that only 12% of the US population had ade-
quate level of health literacy in 2003 for those aged less than
65 years while this percentage decreased even more for the
older adult population [25]. A more recent article reported that
as much as 87% of the Latinos living in the US were found to
have inadequate levels of literacy [19]. As the world focusses
on the sustainable development goals, the importance of liter-
acy in achieving sustainable productivity and social cohesion
is widely recognized. Currently, 1 in 4 children in low- and
middle-income countries cannot read or write a basic sen-
tence, and 102 million youth lack basic literacy skills, with
women representing nearly two-thirds of the world’s illiterate
[52]. In a recent study on HF in Lebanon, it was found that
52% of those enrolled were illiterate. The age groups of this
Heart Fail Rev
study population were older adults and had multiple comor-
bidities that require self-care to maintain wellbeing (Blinded
author).
Health literacy in heart failure
Poor health literacy was named as the leading cause of poor
health outcomes [16]. In a systematic review, it was noted that
patients with lower levels of health literacy were less likely to
do the yearly influenza vaccines, performed less screening for
diseases, and used health care services less than those who had
adequate health literacy [6]. The latter finding was shown to
be inaccurate in later studies reporting that those with lower
levels of health literacy used healthcare services significantly
more than their counterparts within 30 days after hospital dis-
charge [17]. Moreover, patients with lower health literacy
were less likely to identify their daily medications and had
poorer ability to utilize dosing instruments in medication ad-
ministration. In addition to that, low health literacy was re-
ported to be a key cause of the high healthcare cost [16]. Low
health literacy is common among the heart failure population
[26] and was reported to be associated with increased in-
patient and outpatient mortality [2] and hospitalization [23].
Health literacy, death, and readmissions
Health literacy in hospitalized patients with heart failure was
shown to be associated with higher readmission and mortality.
This was reported in a sample of 1379 hospitalized patients
with heart failure where those with lower health literacy score
were 1.32 times more likely to die within the follow-up period
of 20 months than those with higher scores [41]. This was
supported by other studies reporting that inadequate and mar-
ginal health literacy was associated with higher readmission
[44] and mortality rates [44, 46]. In McNaughton’s study,
however, no relationship was found between health literacy
scores and readmission or ED presentation [41]. On the other
hand, hospitalization was significantly associated with low
literacy scores which was reported in a sample of 595 symp-
tomatic patients with heart failure presenting to ambulatory
clinics. Multivariate analysis revealed that those with low lit-
eracy levels were 1.3 times more prone to all cause hospital-
ization or death and 1.4 times more prone to heart failure
related hospitalization [63].
Heart failure knowledge, self-care, and health literacy
In a systematic review, it was reported that almost 40% of
patient with heart failure had lower than average health liter-
acy levels while adequate health literacy was associated with
better heart failure knowledge [65] including knowledge on
self-care practices such as salt restriction [11]. However,
Heart Fail Rev
knowledge alone did not guarantee adherence to self-care over
time [14]. A study conducted in Iran evaluated the effect of
health literacy on self-efficacy and self-care in a group of 80
patients with heart failure. The majority of these patients aged
between 40 and 59 years and only 21% aged more than
60 years. The results showed that higher health literacy levels
were associated with higher self-efficacy. Similarly, self-care
scores were higher with those having higher self-efficacy
scores and higher health literacy indicating a strong relation-
ship between the three variables [57]. This study came to
support the findings of a previous study conducted in the US
on 95 adult patients with a mean age of 59 years. They report-
ed that adequate health literacy was associated with better self-
care confidence score on the Self-Care of Heart Failure
Index when compared to those with marginal or inade-
quate health literacy levels. On the other hand, self-care
maintenance and management scores were not affected
by health literacy level [20]. Matsuoka et al. [40] sup-
ported this finding when studying the association of
health literacy on self-care on a group of 249 patients
with a mean age of 67 years. However, another study
conducted in Spain with older adults with heart failure
with a mean age of 85 years did not support the previ-
ous findings where they reported that those having ad-
equate health literacy were not engaged in their self-care
enough to increase their self-care scores [36]. They key
difference between these studies were in the age of the
sample where the older sample was less involved in
their self-care even when they reported adequate levels
of health literacy.
Correlates of health literacy in patients with heart
failure
Increasing age and multiple comorbidities were found to
be significantly associated with low health literacy in
patients with heart failure [43, 46]. Other factors include
male gender, less education [43], and low socioeconom-
ic status [46]. Depressive symptoms were also signifi-
cantly positively correlated with low health literacy
when studied on a sample of 321 patients hospitalized
for heart failure [67]. Moreover, health literacy was
found to be associated with frailty, which was evaluated
in 281 patients with heart failure attending a cardiovas-
cular clinic in Korea [55].
Older age and low health literacy were significant predic-
tors of worse outcomes in patients with heart failure. This was
demonstrated on a sample of 575 rural patients presenting to
out-patient clinics. The effect of older age on outcomes was
diluted when health literacy was added to the model suggest-
ing that literacy can mediate the effect of age on adverse out-
comes [64].
Health literacy assessment in heart failure
A number of tools are available that evaluate heart failure
specific knowledge in patients with heart failure. The most
studied tools are the Atlanta Heart Failure Knowledge Test
[7], the Dutch Heart Failure Knowledge Scale [8, 9, 31], and
the Heart Failure Knowledge questionnaire [4, 49], in addition
to those that study the knowledge of one aspect of care such as
The Parkland Dietary Sodium Knowledge Test [34]. On the
other hand, health literacy is evaluated using general literacy
tools that are not specific to heart failure population. Such
tools include the Short Test of Functional Health Literacy in
Adults (S-TOFHLA) Questionnaire [15], The European
Health Literacy Questionnaire [32], and The Rapid Estimate
of Adult Literacy in Medicine [28]. This is in exception to the
single tool evaluating literacy in heart failure, which is The
Heart Failure Specific Health Literacy Scale [39]. This tool is
composed of three subscales which evaluate functional health
literacy, communicative health literacy, and critical health lit-
eracy with each sub-scale composed of four items. Each item
is scored on a 4-point Likert scale: inapplicable (1), rarely
applicable (2), sometimes applicable (3), and strongly appli-
cable (4). The higher the scoring of any of the items (except
for item 4) indicates higher health literacy level [39]. The three
subscales were derived from the developer’s belief of the im-
portance of processing and validating the acquired health in-
formation. With the provision of multiple resources of infor-
mation with varying quality and accuracy, patients need to
have enough knowledge base to critically reflect on the abun-
dance of information provided to them [39].
Discussion
This paper explored literacy and health literacy in heart
failure and the methods used for its evaluation in this
selected group of patients. The most used tools for eval-
uation of heart failure literacy, such as the TOFHLA,
show the negative impact of low health literacy on heart
failure-related knowledge, self-care, and quality of life
[65]. However, those tools are general tools that can be
used for other health conditions. The only tool measur-
ing health literacy in heart failure is the Heart Failure
Specific Health Literacy Scale [39] which evaluated the
functional, communicative, and critical health literacy.
These subscales are similar to those used to evaluate
health literacy in patients with diabetes [29]. In fact,
similar to heart failure, literacy was associated with
knowledge on diabetes. However, findings were contro-
versial on the effect of literacy on self-efficacy and
clinical outcomes. These findings were reported in a
systematic review [1].

Implications for reducing the heart failure burden
International guidelines call for both pharmacological
and non-pharmacological therapies to improve heart fail-
ure outcomes. Medications including angiotensin-
converting enzyme inhibitors, beta-blockers, and aldo-
sterone antagonist decrease morbidity and mortality in
symptomatic patients with heart failure. Additionally,
aldosterone antagonist was shown to reduce hospital ad-
missions for patients with ejection fraction lower than
35% [47]. However, medication prescription of the rec-
ommended drugs is below optimal especially in low-
and middle-income countries [12, 22]. This comes in
addition to the absence of education on the importance
of the administration of these drugs especially in pa-
tients with no literacy or low literacy levels leading to
non-adherence to the prescribed regimens. Moreover,
preventive methods and revascularization to those at
high risk is more practiced in high income countries
when compared to the low- and middle-income coun-
tries [66]. Research and policy should focus on high-
risk countries such as those with middle income who
were named to have the highest risk of heart disease
burden [42].
Implications to patient participation in clinical decision
making, health policy, and health citizenship
The Ottawa charter in 1986 called for health promotion
led by empowering people and creating supportive envi-
ronments, strengthening community actions, developing
personal skills, and reorienting health services to be pa-
tient and community centered. The charter highlighted
that health promotion is not only the responsibility of
the health sector, but rather people need to take control
over determinants of health [62]. Hence, the main purpose
was enabling people to increase control over and improve
their health where they live, work, study, and play.
Empowering and enabling people would be achieved by
increasing health literacy. In 2016, the Shanghai declara-
tion proposed health literacy as one of three health pro-
motion pillars needed to improve health outcomes, em-
power citizens, and reduce health inequities [59]. This is
also an important focus of achieving the SDGs.
In this context, several aspects of health literacy are said to
improve treatment outcomes and health promotion among
heart failure patients thus reducing undesirable health out-
comes and health inequalities. These include increased ability
to (1) participate in health care and clinical decision making,
(2) practicing health citizenship to enhance communication
with the healthcare system and healthy settings, and (3) par-
ticipation of patients in health research.
Heart Fail Rev
Participation in health care and clinical decision
making
Active patient participation related to self-management and
adherence, the use of health care services, and decision mak-
ing is reported to have great practical value in achieving better
health outcomes among those who actively participate in
healthcare compared to those who do not [29, 48]. In heart
failure patients, health literacy was reported to be a significant
predictor of patient participation in health care measured as
provider facilitation, patient-provider information exchange,
and patient decision making [35]. Lower health literacy hin-
ders the patient’s understanding of health information and
hence ability to participate in decision making. On the other
hand, adequate functional or critical health literacy enables
patients to express their needs, concerns, and beliefs about
health care and have better perceived self-control over one’s
health and self-efficacy to participate in the health care process
through medical decision making [29, 37, 38, 53]. Moreover,
critical health literacy, as high level of health literacy, was
shown to be important for the involvement and enabling peo-
ple of having a more active role in medical decision-making
and evaluating and weighing treatment [10, 38]. According to
the joint commission, the more involved patients in their care,
the less likely an error will occur [58].
Health citizenship and communication
Health citizenship refers to citizen’s participation in the pro-
cess of health knowledge production, translation, and action to
better understand and manage contextual determinants
governing health inequalities [27]. Health literacy empowers
and enables citizens and patients not only to improve their
self-care skills but also to make better decisions about their
health and direct policy making toward efficient intervention
to promote outcomes [33]. Hence, health literacy is a key
dimension of health citizenship. In this context, a health liter-
ate citizen can participate in health literate friendly settings,
whether local supportive communities or environments, edu-
cational or heath care settings, or work places. In local com-
munities, for example, they can participate in formulating
health literacy support measures like clear labelling, or pro-
viding reliable health information that is enforced by law [33].
In a health care setting, a patient can participate in the design
of health service and health communication taking into con-
sideration primary and secondary or tertiary health care [38]
while using plain language from patient perspective. They can
help with design of health literacy-sensitive educational and
consent materials and health literacy-appropriate educational
materials in waiting rooms [33]. Moreover, in hospitals, pa-
tient groups can form strong political lobbies and councils and
negotiate patient friendly measures with administration such
consent to treatment. At the level of cities and communities,
Heart Fail Rev
promotion of health literacy aids citizens in navigating
through the health, education, and social service systems,
making the healthy choice the easier choice in settings under
city jurisdiction [33].
Ultimately, in a health literate population, citizens can pro-
vide health information in an understandable way for the pa-
tient and alter social norms and social determinants of health
to empower the community. Consequently, by supporting pa-
tients with low health literacy, this will facilitate seeking and
understanding information, making healthy decision, partici-
pating in the health care process, and engaging in self-
management [29].
Patient participation in health research
Beyond the recommendation of tailoring the informed consent to
participants’ health literacy level [38], health literacy allows for
health service users to take part in the prioritization, design, man-
agement, undertaking, and dissemination of health research. In
this context, health literacy enables patients and public to take
part in identification of research questions and outcomes to assess
that are of importance and address their needs. Patients and pub-
lic participation can range from design of tools, design of work-
shops, evaluation of pilot test, and more. Such an involvement
can, for example, answer questions like “know how best to live
with a chronic condition rather than what is the “best” treatment”
[61] namely heart failure.
As the burden of heart failure increases in low- and middle-
income countries, literacy and all of its components has to be a
fundamental consideration. These components include the so-
cial determinants of health such as gender and income in ad-
dition to self-care and health perception [56].
Conclusion
Adherence with treatment recommendations is critical to im-
prove health outcomes in heart failure. Enhancing health lit-
eracy among individuals living with heart failure will enable
them to increase control over their condition by better under-
standing and participating in health care at the individual lev-
el, while being empowered to take part in designing health
care service and programs even tailoring research to serve
their needs and consequently improve outcome at the individ-
ual and community level. Tackling this complex issue will
require a whole of society approach addressing fundamental
social determinants of health. In clinical practice, measuring
health literacy and identification of patients at risk of low
nutrition literacy are important to enhance health literacy and
health outcomes. Hence, developing reliable and valid
methods and tools for assessment and developing tailored
and targeted interventions are of critical importance, particu-
larly in low- and middle-income countries.
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