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Self-care and health-related quality of life in chronic heart failure: A longitudinal analysis

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Dionne Kessing, Johan Denollet, Jos Widdershoven,

Nina Kupper

First Published March 23, 2017

Background:

Self-care is assumed to benefit health outcomes in patients with chronic heart failure (HF), but the
evidence is conflicting for health-related quality of life (HRQOL). The aim of this study was to
examine the association of (changes in) self-care with HRQOL while adjusting for psychological
distress.

Methods:

In total, 459 patients (mean age = 66.1 ± 10.5 years, 73% male) with chronic HF completed
questionnaires at baseline and at 6, 12 and 18 months of follow-up. Self-care and HF-specific HRQOL
were quantified with the European Heart Failure Self-care Behaviour scale and the Minnesota Living
with Heart Failure Questionnaire.

Results:

Using general linear models, multivariable between-subject (estimate = –0.14, p = 0.005) and no


within-subject effects of self-care were found for better HRQOL over time. Associations between self-
care and HRQOL were fully explained by depression (estimate = 1.77, p < 0.001). Anxiety
(estimate = 4.49, p < 0.001) and Type D personality (estimate = 13.3, p < 0.001) were associated with
poor HRQOL, but only partially accounted for the relationship between self-care and emotional
HRQOL.

Conclusions:

Self-care was prospectively associated with better disease-specific HRQOL in patients with HF, which
was fully accounted for by depression, and partially accounted for by anxiety and Type D personality.
Changes in self-care within a person did not affect HRQOL. Psychological distress should be
considered in future efforts to address self-care and HRQOL.

Keywords Anxiety, depression, heart failure, quality of life, self-care, stress, psychological, Type D
personality

Introduction

Chronic heart failure (HF) is a clinical syndrome affecting 2–3% of the global population.1,2 It is
associated with frequent hospital admissions, imposing a vast burden on industrialised
countries.3,4 Standard treatment of HF is aimed at prolonging life by maintaining physiological
stability.1 It usually involves a complex regimen of daily self-care behaviours, including
pharmacological therapy, symptom monitoring and lifestyle modifications.

Health-related quality of life (HRQOL) is profoundly impaired in patients with HF.5 Many patients
suffer from other conditions, including diabetes, anaemia and renal disease,6 but also from
psychological distress.7,8 Patients with HF are prone to experiencing disabling psychosocial
consequences of their burdening condition, such as social isolation and fear.9 Several demographic and
clinical factors are known to impact HRQOL, such as younger age, increased disease severity and
poor functional capacity.10

It seems likely that self-care would benefit HRQOL, as it is targeted at reducing HF symptoms in
order to improve the patient’s physical condition. However, findings from previous, primarily cross-
sectional and small studies have yielded inconsistent results,11–14 also when examining the effects
of self-care interventions on HRQOL.15 We therefore investigated the longitudinal association of
HF self-care and HRQOL in a large cohort of patients with chronic HF. We extend previous work by
examining whether differences in self-care within and between patients were related to HRQOL over
time. Furthermore, as psychological distress adversely relates to HRQOL,7,11 we explored whether
depression, anxiety and Type D personality explained potential relationships between self-care and
HRQOL.

Methods
Patients and procedure
This study is part of the Elisabeth-TweeSteden Heart Failure Cohort Study. Consecutive patients
attending the outpatient HF clinic of the Elisabeth-TweeSteden teaching hospital (Tilburg, The
Netherlands) were approached for participation in a longitudinal study with five measurement
occasions over a total follow-up period of 18 months.16,17 Exclusion criteria comprised: diastolic HF;
age ⩾80 years; a myocardial infarction or hospitalisation in the month prior to inclusion; a life-
threatening disease with a life expectancy <1 year; serious psychiatric illness except for mood
disorders; or insufficient understanding of and fluency in the Dutch language. Patients were informed
about the study and recruited by their cardiologist or specialised HF nurse. If patients agreed to
participate, they were called in the same week to arrange a baseline appointment. At baseline, patients
completed a psychological survey at home, which was returned in a self-addressed envelope. At 6, 12
and 18 months of follow-up, patients were contacted to complete the psychological survey again. In
case of missing items, patients were contacted by phone or email in an attempt to obtain the missing
answers. If the questionnaire was not returned within 2 weeks, patients received a reminder telephone
call or letter. Of 570 eligible patients, 465 agreed to participate (81%) and 459 patients returned the
baseline questionnaire. Written informed consent was obtained from all patients. The study protocol
was approved by the institutional medical ethics review boards of all participating hospitals.

Measures
Self-care

The nine-item European Heart Failure Self-care Behaviour scale (EHFScB-9)18 was administered in
order to assess self-care at baseline and 6, 12 and 18 months of follow-up. Items were rated on a five-
point Likert scale from 1 (‘I completely agree’) to 5 (‘I completely disagree’). To calculate sum
scores, item scores were reversed, with a possible range of 9–45. Raw sum scores were transformed
into standardised scores from 0 to 100, with higher scores reflecting better self-care.19 This includes a
four-item ‘consulting behaviour’ subscale that measures whether patients contact their physician in
case of a sudden increase of the following symptoms: shortness of breath, ankle swelling, weight gain
or fatigue. The remaining items assess how patients judge their adherence to the most commonly
recommended self-carebehaviours: daily weight monitoring, limiting fluids, low-sodium diet, regular
exercise and medication adherence. The internal consistency of the total self-care and its consultation
scale were acceptable (Cronbach’s α = 0.79) and good (Cronbach’s α = 0.87) at baseline, respectively.
For descriptive statistical purposes, we split the person-mean of self-care (i.e. an individual’s self-
care scores averaged over all time points) at the median in order to denote low and high self-care, as
there are no well-validated cut-off values published in the literature.

Health-related quality of life

The Minnesota Living with Heart Failure (MLWHF) questionnaire was administered in order to assess
HF-specific HRQOL at all time points.20,21 The MLWHF is designed to assess the effects of HF
symptoms, functional limitations and psychological distress on the patient’s quality of life. Twenty-
one items are answered on a six-point Likert scale ranging from 0 to 5. Higher scores indicate worse
HF-specific HRQOL, with a difference of five denoting a clinically relevant change. 22 This provides a
total score that includes additional social, HF-specific and healthcare-related items, as well as a
physical and emotional dimensional subscale score.

Depression

The 21-item Beck Depression Inventory (BDI)23 was used in order to assess depressive
symptomatology. This is a well-validated self-report measure and has been found to be reliable for
measuring depressive symptomatology in patients with chronic HF.24 Each item is rated on a 0–3
scale. A total score is obtained by the sum of all items. We performed three assessments of depressive
symptoms at baseline and at the 12- and 18-month follow-up visits. Internal consistency was good at
all three measurement occasions, with Cronbach’s α being 0.86, 0.83 and 0.82, respectively.

Anxiety

Symptoms of anxiety were assessed with the two anxiety items (i.e. tension and restlessness) of the
Symptoms of Anxiety–Depression index (SAD4), which has been shown to detect an increased risk of
anxiety disorder in cardiac patients.25 Items are answered on a five-point Likert scale with a range
from 0 (‘not at all’) to 4 (‘very much’). The internal consistency was high in this study
(Cronbach’s α range = 0.87–0.92).

Type D personality

The 14-item Type D Scale (DS14) was used in order to assess Type D personality,26 which is defined
as the combination of the negative affectivity (NA) and social inhibition (SI) personality traits.
Individuals with a Type D personality tend to experience negative emotions across time and situations,
and have the tendency of not expressing themselves in social interactions because of fear of rejection
or disapproval by others. Type D personality has been shown to independently predict
HRQOL27 and self-care28 in patients with HF. Items are answered on a five-point Likert scale, ranging
from 0 (‘false’) to 4 (‘true’). The DS14 consists of two seven-item subscales – NA and SI – which are
time-stable and internally consistent (Cronbach’s α = 0.88/0.86).26,29 In the current study, Cronbach’s α
was .87 for NA and .84 for SI. The standardised cut-off score of ⩾10 on both subscales was used in
order to classify individuals with a Type D personality.26

Sociodemographic and clinical covariates

We included demographics (i.e. age, gender, educational level and living alone), cardiac history and
comorbidities. We dichotomised education into two groups (i.e. 8 years or less vs. more than 8 years)
for presentation purposes. We did not include New York Heart Association (NYHA) functional class,
as its criteria largely overlap with the items of the MLWHF questionnaire. Left ventricular ejection
fraction (LVEF) was also not included as a covariate because the majority of studies have found no
association between (LVEF) and HRQOL.10,11

Statistical analysis

We examined the course of total, physical and emotional HRQOL over all measurement occasions
using pairwise comparisons. We stratified the course of HRQOL for above- and below-median levels
of total self-care. In order to analyse the effects of the level (between subjects) and change (within
subjects) of self-care over time on the course of HRQOL, we conducted linear mixed modelling
analyses (using maximum likelihood [ML] estimation and an unstructured covariance matrix). To this
end, we calculated the person-mean of self-care over the measurement occasions in order to address a
between-subjects effect. Then, we calculated the deviations from this person-mean at each time point
in order to obtain information on the person-specific change in self-care so as to address within-
subjects effects. These two variables constituted our independent variables.

Three separate analyses were performed for total, physical and emotional HRQOL as outcome
measures. Separate analyses were performed for total self-care and for the consultation behaviour
subscale.13 In step 1, the self-care variables (person-mean and deviation) were entered (unadjusted
model). In step 2, we adjusted the models for demographic and clinical covariates. In a final step, we
separately added depression, anxiety and Type D personality. All illness-related and psychological
covariates were time-varying, except for demographic variables and Type D personality. Estimates
were reported, which represent the non-standardised regression coefficients of the dependent variable
when the independent variable increases by one unit. Analyses were performed with SPSS 20.0 for
Windows (IBM SPSS Statistics for Windows, version 20.0; Armonk, NY: IBM Corp. USA). Tests
were two-tailed with a p-value < 0.05 indicating statistical significance.

Results
Sample characteristics

Baseline characteristics are presented in Table 1. Patients with below-median scores of total self-
care received less education. They demonstrated less favourable health behaviours (reduced physical
activity and higher body mass index). The below-median self-care patients more often had a cardiac
history. Angiotensin-related medication and loop diuretics were less likely to be prescribed to the
below-median self-care group. Those who were low in self-carereported increased symptoms of
depression and anxiety. There were some trend associations as well, suggesting that the below-
median self-care patients lived alone a bit more often. They also tended to have larger comorbidity
burdens, as well as fewer implanted cardioverter defibrillators or pacemakers. Type D personality
tended to be more prevalent in the low self-care group, although this was not a significant difference
(p = 0.08).

Table 1. Baseline patient characteristics (in percentages, unless


stated otherwise).

Table 1. Baseline patient characteristics (in percentages, unless stated otherwise).


Bold: significant at p < 0.05.

ACEi: angiotensin-converting enzyme inhibitor; ARB: angiotensin receptor blocker; BMI: body
mass index; CCI: Charlson Comorbidity Index; ICD: implanted cardioverter defibrillator; LVEF:
left ventricular ejection fraction; NYHA: New York Heart Association.

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Attrition

In total, 56 patients (13%; of whom 22 were deceased) dropped out at the 12-month measurement
occasion, while another 20 patients (4%; of whom seven were deceased) dropped out at the 18-month
measurement occasion. Patients who dropped out were more likely to have a worse illness severity
(NYHA class III, χ2 = 12.1, p < 0.001) and to have a lower educational level (χ2 = 5.7, p = 0.02).
Patients who dropped out at 18 months were more likely to have an elevated Charlson Comorbidity
Index (CCI) score at 12 months (F = 8.47, p = 0.004; no differences at earlier measurement occasions).
There were no differences in self-care between completers and dropouts. Patients who dropped out did
have significantly worse HRQOL during the measurement occasions before their dropping out
(inclusion: F = 5.20, p = 0.02; 6-month follow-up: F = 7.50, p = 0.006) and had increased levels of
depression (F = 4.45, p = 0.04) and anxiety (F = 5.06, p = 0.03) at baseline, but not at intermediate
follow-up occasions.

HRQOL over time

HRQOL differed over time (F = 3.96, p = 0.01), with pairwise comparisons showing that HRQOL
was, on average, better at all follow-up occasions than at baseline (p < 0.04; Figure 1). At 1 year,
HRQOL tended to be better than at 6 months (p = 0.05), while at 18 months, HRQOL was not
significantly different from HRQOL at the 12-month follow-up. Average differences were smaller
than five points (between 1.6 and 3.0). Physical and emotional subscale scores showed a main effect
of time (F = 2.84, p = 0.04; F = 9.51, p < 0.001, respectively), although the pattern of differences was
different. Physical HRQOL had a wave form, with patients doing better at 1 year of follow-up and
moving back towards baseline levels at 18 months of follow-up. Emotional HRQOL was worse at
baseline compared to at all three other follow-up occasions.
Figure 1. Health-related quality of life total, emotional and physical component scores over time and
stratified by self-care categories.

Higher MLWHF scores denote worse health-related quality of life. Self-care groups were based on the
median split of the longitudinal person-mean.

MLWHF: Minnesota Living with Heart Failure.

More patients in the above-median self-care group (42%) showed a clinically relevant improvement in
HRQOL of five points or more over the first 6 months compared to the below-median self-care group
(32%), which included a larger number of patients who significantly deteriorated (37% vs. 29%). At
12 months, there were more deteriorating patients in the low self-care group (31% vs. 22%). The
percentage of improving patients was equal for low and high self-care groups. At 18 months, the
differences between low and high self-care groups altered, with a similar percentage of clinically
relevant deterioration as compared to baseline in HRQOL (32 vs. 27%) and more divergent
percentages of patients who were clinically improving (32% vs. 42%).

Self-care and HRQOL

As a first step, we entered the person mean of self-care and the deviation from this person-mean over
time in order to assess between-subjects and within-subjects effects of self-care on HRQOL total and
component scores. The results showed a significant between-subjects effect of self-
care (F = 12.61, p < 0.001), but no significant within-subjects effect (F = 0.32, p = 0.57). Table
2 shows the estimates of the individual parameters, representing non-standardised regression
coefficients of the dependent variable when the independent variable increases by one unit. Better
mean self-care was associated with better HRQOL over time, while within-person variation in self-
care across time was unrelated to the level of HRQOL across time. After adjusting for established
covariates (step 2), the relationship between self-care and HRQOL remained similar. Low education
level was a significant predictor of worse HRQOL. In the third and final step, we included
psychological distress in three different sub-models for depression, anxiety and Type D personality.
All three psychological distress variables were strongly related to total HRQOL. Examining the
difference in self-care estimates between models 2 and 3 would give an indication of how much of the
effect of self-care on HRQOL could be explained by psychological stress. Depression shared almost
all variance with self-care, as the estimate for the grand mean of self-care (between subjects) was
reduced to nearly zero. Anxiety overlapped partly with self-care in explaining variance in HRQOL
over time, indicating that self-careaffected HRQOL independently of anxiety. Type D personality
overlapped the least with self-carein explaining variance in HRQOL over time, with the estimate
of self-care largely remaining similar to the estimate in the prior step.

Table 2. Results from multivariable linear mixed models for self-


caretotal score.

Table 2. Results from multivariable linear mixed models for self-caretotal score.
This table shows three prediction models of HRQOL total, physical and emotional scores in an
unadjusted model, a covariate-adjusted model and the full model, including psychological
predictors. Because of the high correlation between psychological variables, we calculated the
third model three times separately for each psychological predictor. Estimates denote the change
in the outcome value when the predictor changes by one unit/point.

Bold: significant at p < 0.05 level; italic: p < 0.10.

HRQOL: health-related quality of life.

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The physical and emotional subcomponents were less strongly related to self-care than the total score
(Table 2). In unadjusted analyses, between-subject differences in self-care were significantly related to
difference in physical and emotional HRQOL over time. This effect disappeared for emotional
HRQOL in adjusted analyses. Low education level and a larger comorbidity burden were both related
to poorer physical but not emotional HRQOL. It was shown that psychological distress was strongly
related to poorer physical and emotional HRQOL. Higher self-care remained a predictor for better
physical HRQOL when anxiety and Type D personality were included. Self-care no longer predicted
emotional HRQOL when psychological distress variables were included.
Consultation behaviour and HRQOL

Results were similar for consultation behaviour. We found a main effect of between-subject
differences (F = 16.74, p < 0.001), but no within-subject effects on consultation behaviour
(F = 1.25, p = 0.26). These main effects were similar for the physical (F = 17.55, p <
0.001; F = 1.56, p = 0.21) and emotional HRQOL (F = 8.95, p = 0.003; F = 0.001, p = 0.97)
subcomponents. Table 3shows the estimates of the individual parameters, representing non-
standardised regression coefficients of the dependent variable when the independent variable increases
by one unit. Between-subject differences in consultation behaviour affected levels of HRQOL in
unadjusted analyses; poorer consultation behaviour was associated with worse HRQOL, and this
remained significant and of similar size when adjusting for demographic and clinical covariates.
Within-subject variation of reported consultation behaviour over time was unrelated to HRQOL.
When considering psychological distress, poorer consultation behaviour remained a predictor for
poorer HRQOL when anxiety and Type D personality were included. Depression reduced the effect of
consultation behaviour to a non-significant level. With respect to the physical and emotional
subcomponents, similar patterns appeared as were observed for total self-care.

Table 3. Results from multivariable linear mixed models for the


consultation behaviour subscale score.

Table 3. Results from multivariable linear mixed models for the consultation behaviour subscale score.
This table shows three prediction models of HRQOL total, physical and emotional scores in an
unadjusted model, a covariate-adjusted model and the full model, including psychological
predictors. Because of the high correlation between psychological variables, we calculated the
third model three times separately for each psychological predictor. Estimates denote the change
in the outcome value when the predictor changes by one unit/point.

Bold: significant at p < 0.05 level; italic: p < 0.10.

HRQOL: health-related quality of life.

View larger version

Discussion

The current study examined the longitudinal association of self-care and HRQOL over a follow-up
period of 18 months in a cohort of 459 patients with chronic HF. The results led to two primary
conclusions. First, between-subject differences in self-care, but not within-subject changes in self-care,
were associated with HRQOL over time. Lower self-care was associated with poorer overall HRQOL,
as well as its physical and emotional subcomponents. Associations were robust since they were hardly
affected by established covariates, and were similar for total self-careand the consulting for HF
symptoms subscale. Against the background of the inconsistent results published so far, the current
study supports the notion that HF self-care is prospectively associated with HRQOL.11–14 Self-
care was most relevant in terms of total HRQOL, which involved additional social, HF-specific and
healthcare-related items in comparison to the physical and emotional HRQOL subcomponents. This
study extends previous work on the impact of psychological factors on cardiac disease30 by showing
that psychological distress affected the relationship between HF self-care and HRQOL negatively;
either a substantial part or the entire relationship was explained by psychological distress levels.
Depression fully explained the relationship between self-care and all HRQOL domains. While anxiety
and Type D personality were related to poor HRQOL, they only explained the relationship
between self-care and emotional HRQOL. In line with the majority of studies, patients who were low
in self-carereported higher levels of psychological distress.31

Depression, anxiety and Type D personality should be considered in future attempts to address self-
care and HRQOL. Why depression was more relevant with respect to self-care and physical HRQOL
may be explained by its somatic–affective component greatly impacting physical function through
direct and indirect effects. Research increasingly shows that somatic rather than cognitive depressive
symptoms are related to poorer cardiovascular health (e.g. reduced heart rate variability32), as well as
increased mortality risk in HF.16 We hypothesise that somatic–affective symptoms may be of indirect
influence on physical HRQOL, preventing patients from performing daily self-care behaviours.
Another reason may be negative cognitive bias, which is often present in people with depressive
symptoms, leading to poor perceptions of both self-careand HRQOL.33

HRQOL improved over time, but this was not clinically significant (<5 points). Clinically significant
deteriorations in HRQOL were observed more often in patients who were low in self-care, especially
within the first year of follow-up. Against expectations,13 within-person variations in self-care did not
relate to changes in HRQOL. Changes in self-care within a person may perhaps be necessary in order
to maintain stable physical and emotional homeostasis, which may therefore not be reflected in
significant changes in HRQOL. Further studies are necessary in order to replicate these results and
examine such a mechanism. Predictors of poor HRQOL other than self-care were low education level
and increasing CCI, which reflects the burden of comorbid conditions and ageing.

Further studies should examine which components of psychological distress serve as potential
mediators of the relationship between self-care and HRQOL. Accumulating studies suggest that
specific psychological characteristics or dimensions (e.g. anhedonia or somatic symptoms) of
depression are more important with respect to specific facets of self-care31 and HRQOL.34Given the
lack of effectiveness of self-care interventions on quality of life,15 interventions that are designed to
improve self-care may have to incorporate the role of psychological distress in order to impact
HRQOL. This is supported by a meta-analysis showing that face-to-face psychosocial interventions
are beneficial to improving quality of life in chronic HF patients.35

There are several limitations of this study. Self-care was assessed by means of self-report, which is
subject to systematic biases and may not reflect actual behaviour.36 It would also have been preferable
to use a more extensive anxiety measure or interview. The follow-up period of 18 months might have
been too short to detect relevant changes in self-care and/or HRQOL. Our findings suggest that
psychological distress mediates associations between self-care and HRQOL. This was not addressed
with statistical methods, as it diverted from the main aim of the study. We had a small percentage of
missing data. As mixed linear effects modelling makes use of ML estimation, imputation of the
missing values was not necessary. Finally, given the observational nature of the study design, no
conclusions can be drawn regarding the causality of these relationships. The strengths of this study
were its large sample size, its longitudinal design with self-care and HRQOL as time-varying variables
and its inclusion of psychological distress. In addition, this is the first study to examine whether
changes in self-care within a person were associated with changes in HRQOL.

Advances in cardiovascular treatment have led to better survival rates. Consequently, the chronicity of
HF continues to increase and the risk for hospitalisation remains high. Clinicians are challenged to
minimise the devastating effects of HF on HRQOL, possibly through effective self-care. This study
confirmed that self-care was associated with HRQOL, but this relationship was greatly affected by
psychological distress, primarily depression. Changes in self-care within a person over time did not
contribute to HRQOL. From a clinical perspective, our results emphasise the notion that psychological
distress is essential to and underlies the relationship between self-care and HRQOL. Further research
will enable us to gain a better understanding of the potential psychological and behavioural factors that
contribute to overall HRQOL in patients with chronic HF.

Conflict of interest
The authors declare that there is no conflict of interest.
Funding
Part of this work was supported with a VICI grant (453-04-004) from the Dutch Organization for
Scientific Research (NWO) awarded to Prof Dr Johan Denollet.

 Implications for practice


 Self-care, but not changes in self-care, is associated with heart failure-related quality of life over
time.
 Depressive symptoms are most relevant in determining worse heart failure-related quality of life.
 Minimising psychological distress may benefit both self-care and health-related quality of life.

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Self-Care Among Older Adults With Heart Failure
Sumayya Attaallah, MSN, RN, Kay Klymko, PhD, ARNP, FNP-BC, Faith Pratt Hopp, PhD

First Published December 21, 2016

Abstract

Background: It is estimated that 5.7 million Americans are living with heart failure (HF)
today. Despite the fact that HF is one of the most common reasons people aged 65 years and
older are admitted into the hospital, few studies describe the self-care in this older adult
population. Purpose: The purpose of the study was to review the current literature on self-
care in this population to better understand the influence of selected factors on self-care and
health outcomes. Methods: A literature search was completed and resulted in including 28
studies. Results: Multiple factors have been reported as barriers to self-care including
depression and presence of peripheral arterial disease. Factors having a positive effect on self-
care are male gender, number of cardiologist referrals, and self-efficacy. There were few
studies that described the association between cognitive functioning and self-care. There is a
lack of strong evidence to support the association between self-care and health outcomes such
as readmission rate, but recent studies suggest that a 30-day readmission is not a valid
predictor of health outcomes. Implications: The assessment of the psychological factors and
health care resource utilization patterns that may influence self-care is recommended. More
research that addresses the role of cognitive factors in influencing self-care is needed.

Keywords self-care, older adults, heart failure

Introduction

About 5.7 million Americans are living with heart failure (HF) today (Mozaffarian et al.,
2016). Between 2007 and 201l, the prevalence of HF increased with aging, resulting in
estimations that 4.7% of adults 45 to 64 years of age and 19% of adults 65 years of age and
older are affected by this disease (U.S. Department of Health and Human Services, 2012). HF
is also one of the most common reasons people who are aged 65 years and older are admitted
into the hospital. HF, as a prevalent admission diagnosis, is cause for alarm when considering
that the estimated total cost for the care of patients with HF is US$30.7 million annually in a
population that is aging (Mozaffarian et al., 2016). It has been suggested that the high costs of
health care for individuals with HF may be avoidable by applying effective programs to
improve self-care management relevant to HF (Riegel et al., 2009).

Although age-related factors such as cognitive impairment, limitation in physical abilities,


and social isolation contribute to the complexity of self-care among older adults with HF (De
Geest et al., 2004; Kamrani et al., 2014), most studies that investigated HF self-care have not
focused on older adults specifically (Abete, 2013). Older patients with HF have demonstrated
less optimal self-care than younger patients (Cocchieri et al., 2015). This decrease in HF self-
care among older adults could be due to increase in visual, hearing, and cognitive impairment
(Abete, 2013; Kamrani et al., 2014). Cognitive impairment has been determinate to negatively
influence adherence to self-care among older adults with HF (Abete, 2013; Luyster, 2009).
Further research is needed to explore the influence of age-related factors on self-care among
older adults with HF which can improve health outcomes among these individuals by
targeting them with age-appropriate strategies to improve self-care.

Self-care improvement programs targeted at older adults with HF may be developed based on
theoretical guidance and research evidence from the empirical literature (Oosterom-Calo et
al., 2012). Some theories such as self-care deficit nursing theory (SCDNT; Orem, 2001) and
the specific-situation theory of HF self-care (Riegel, Dickson, & Faulkner, 2016) may provide
the needed guidance for HF self-care improvement programs. This expected role in guiding
the programs is related to the fact that SCDNT (Orem, 2001) proposes factors that may
influence producing self-care and the specific-situation theory of HF self-care (Riegel et al.,
2016) describes the purpose of the specific behaviors that may be needed to support
successful HF outcomes (Riegel & Dickson, 2008; Riegel et al., 2016 ). Self-care is defined
as a human regulatory function that individuals have to perform to achieve health and well-
being (Orem, 2001). The ability (e.g., Self-Care Agency [SCA]) to engage in self-care has
also been proposed to be influenced by multiple internal factors (e.g., age, developmental
state, gender, health state, sociocultural orientation, and pattern of living) and external factors
(e.g., health caresystem, family system, availability of resources, and environmental) (Orem,
2001). Moreover, the ability of an individual (e.g., cognitive skills, decision-making ability,
and goal-setting ability) is proposed to influence an individual’s production of self-
care (Orem, 2001). The specific behaviors that are proposed to support successful HF
outcomes have been described by Riegel and Dickson (2008) as “self-care maintenance of
HF.” This type of self-care maintenance “reflects behaviors used to maintain physiologic
stability, symptom monitoring, and treatment adherence” exemplified by seeking assistance
when worsening symptoms occur, daily weighing, and adherence to medication, diet, and
exercise (Riegel et al., 2004; Riegel & Dickson, 2008).

Health care professionals planning programs to improve self-care in this population also need
to be guided by empirical evidence. The purpose of this review was to utilize current
theoretical knowledge to guide an exploration of the empirical literature to better understand
the relationships of selected factors to the production of self-care and the contribution of self-
care to achieving successful health outcomes in older adults with HF The reasons behind the
selection of SCDNT (Orem, 2001) to guide this literature review include the following: (a)
This theory provides a well-developed description of self-care, and (b) identifies the effect of
a variety of social, environmental, and personal factors on self-care (Orem, 2001). This theory
was used to guide the selection of search keywords as well as the organization of the
extracted data in certain categories. Understanding current evidence about these important
relationships will assist health care providers in developing programs that can further be
tested for their effectiveness in improving self-care and HF outcomes in older adults.

Method

Studies were identified by searching the databases CINAHL and PubMed from 2004 to 2015.
A 10-year time limit was used to include both classical studies and more recently published
literature. The search terms used were heart failure, self-care, self-management, readmission,
and a combination of terms that express the factors that have been theoretically proposed to
influence self-care (Orem, 2001). A complete list of search terms is available in Table 1.

Table 1. Database Search.

Table 1. Database Search.


View larger version

The criteria for inclusion of articles for review were original research that was peer reviewed,
in the English language, and included a sample of adults who were 65 years of age and older
with a primary diagnosis of HF. Articles were excluded if the study inadequately specified the
age of participants or had a sample of a mean age that was less than 65 years. The initial
search resulted in a total of 880 nonduplicated articles (see Figure 1) and was followed by a
second step for article selection based on a review of the published abstract for its consistency
with the inclusion and exclusion criteria and resulted in the selection of 70 articles. Finally,
the full text and the abstracts were reviewed again and some articles were excluded because
the focus of the study was either one self-care behavior or did not include hospital
readmission as a heath outcome. The articles that met the inclusion criteria of the review were
28 articles. Studies were classified according to their ability to inform current scientific
knowledge about five themes: (a) self-care among older adults, (b) factors (internal and
external) influencing HF self-care ability, (c) individuals’ abilities influence on HF self-care,
(d) HF interventions, and (e) HF health outcomes.
Figure 1. Strategy of selecting the used articles of the literature review.

Results and Discussion


Self-Care Among Older Adults With Heart Failure

HF self-care involves choices of behaviors to maintain physiologic stability (i.e., adherence to


a medication regimen, following a low Sodium diet, and restriction of fluid intake) as well as
managing symptoms (i.e., taking an extra diuretic pill, or seeking the help of a
health careprovider; Riegel & Dickson, 2008). HF self-care is more difficult for older adults
than it is for younger adults; particularly in regard to recognizing and responding to
symptoms (Riegel, Dickson, Cameron, et al., 2010). The complexity of HF self-care among
older adults increases due to age-related factors such as auditory, visual, and cognitive
impairment (Alosco et al., 2014; Dodson, Truong, Towle, Kerins, & Chaudhry, 2013)
Factors Influencing Heart Failure Self-Care Ability

Internal factors

A few studies have examined several internal factors (e.g., health status, cultural orientation)
to determine their effect on the individual’s ability to manage HF (Hjelm et al., 2012; Jiang,
Wu, Che, & Yeh, 2013; Riegel, Dickson, Kuhn, Page, & Worrall-Carter, 2010). Hjelm et al.
(2012) conducted a prospective study and recruited 702 individuals with HF who were 80
years and older to examine the longitudinal effect of HF (individual’s health status) on
cognitive changes (individual’s ability). The cognitive abilities included processing speed,
visuospatial ability, short-term memory, semantic memory, and episodic memory. At
baseline, individuals with HF differed significantly from individuals without HF in spatial
performance and episodic memory; individuals with HF demonstrated poorer performance
than individuals without HF. However, this difference disappeared in the terminal period of
the study as individuals with HF received treatment. The results suggested that an individual’s
health status (e.g., visuospatial ability and visuospatial ability) may affect their ability to
manage HF since, visuospatial ability (e.g., recognizing shapes, following a map), and
episodic memory (e.g., what the individual ate for breakfast) are likely important to adherence
to medical therapy (Hjelm et al., 2012). The longitudinal nonsignificant differences in
cognitive functions between individuals with and without HF are consistent with the results
of Karlsson et al. (2005) in their study of 208 individuals with a mean age of 76 years who
were treated for HF These results may provide evidence that not only may health status affect
ability for self-care management in HF, but that HF treatment may improve cognitive
functions likely to be important in HF self-care management.

In addition to HF, health states of depression and cognitive deficits have also been determined
to negatively affect adherence therapy (medication and diet recommendation) in older adults
(Abete, 2013). Cameron, Worrall-Carter, Riegel, Lo, and Stewart (2009) reported high levels
of depression among older adults with HF, supporting the need to carefully assess health
states of individuals with HF, depression, and cognitive deficits.

Regarding culture, Jang, Toth, and Yoo (2012) found no significant differences between
Korean Americans and Caucasian Americans in HF self-care behaviors; however, there was a
difference in each group ranking of HF self-care behaviors. Korean Americans ranked
avoiding canned soup as the ninth important behavior while Caucasian Americans ranked it as
the 14th. The researchers explained that Korean Americans did not consume canned food
because they are older adults who are used to consuming Korean food which is high in
sodium. These findings regarding the consumption of Korean food are consistent with the
results of Jiang et al. (2013)who found that cultural background affected the self-
care practices (e.g., dietary intake, sodium restriction) of Chinese older adults with HF. All of
the participants believed that they avoided salty food; however, they reported eating Chinese
foods which were heavily spiced and pickled. It has been suggested that the cultural
experiences, practices, and beliefs of individuals be better understood to improve medical
management concerning diet and fluid restriction.

Several studies explored the influence of personal characteristics directly on self-care among
older adults with HF (Cameron et al., 2009; Chriss, Sheposh, Carlson, & Riegel, 2004; Peters-
Klimm et al., 2013). Multiple factors were examined for their effect of self-care in various
models containing variables empirically defined and consistent with the constructs of Orem
(2001) which are SCA and internal and external Basic Conditioning Factors (BCFs). In a
study conducted by Cameron et al. (2009), selected predictor variables for self-
care maintenance and management included cognitive function, self-confidence, depressive
symptoms, age, gender, social isolation, and comorbid diseases. The variance in self-
care explained by these predictor variables was 39% for self-care maintenance (e.g.,
adherence to low sodium diet) and 38% for self-caremanagement (e.g., ability to identify
symptom changes, intervene with remedies and evaluate effectiveness of the intervention).
Similarly, Chriss et al. (2004), using a conceptual model to explore predictors of self-
care maintenance, found that the variables of age, gender, education, social support,
comorbidity, and severity of the disease explained 14.8 % of self-care in their study at
baseline. Moreover, Cocchieri et al. (2015) tested the influence of age, gender, education,
marital status, job, family income, caregiver support, comorbidity, and cognitive function on
HF self-care. The significant determinants of self-care maintenance for these studies were age
(Chriss et al., 2004; Cocchieri et al., 2015), gender (Cameron et al., 2009; Chriss et al.,
2004; Cocchieri et al., 2015), poor cognition (Cocchieri et al., 2015), depression status,
experience with the disease, and self-confidence (Cameron et al., 2009). Patients who have
longer experience with the disease had better HF self-care levels as well as patients with high
levels of self-confidence (Cameron et al., 2009). Patients with depression were found to have
accurate beliefs about HF, but not about how to control it through self-care behaviors (Albert
& Zeller, 2009; Cocchieri et al., 2015). The explanatory value of comorbidity (health status)
was inconsistent in these two studies. One study found fewer comorbidities were associated
with better self-care maintenance (Chriss et al., 2004), whereas the other study suggested that
a high number of comorbidities was associated with better self-care (Cameron et al., 2009).

The complexity of the contribution of an individual’s health status in predicting their success
in self-care has been further explored by Peters-Klimm et al. (2013) who reported that health
state factors, such as health conditions associated with HF, may be significant determinants
of self-care, along with self-care confidence and the availability of resources. Their results
showed that different HF-associated medical conditions differ in their influence on
individuals’ self-carebehaviors; some were associated with poor self-care practices (e.g.,
peripheral arterial diseases), while others were associated with better self- management (e.g.,
presence of prosthetic heart valve). This finding could be because when patients undergo a
major surgical intervention and experience improvement in their health, they become
motivated to adhere to HF self-care practices, whereas patients with peripheral arterial
diseases may have limited functional improvement after an exercise training program which
may lead to low adherence with HF self-care behaviors (Peters-Klimm et al., 2013).

The nonsignificant and inconsistent influence of many of the personal characteristics (i.e.,
internal BCFs) suggests the need to study the influence of these factors on self-care abilities
first, then control for their effect statistically to study the direct effect of SCA on self-care.
This conclusion was confirmed by the findings of Riegel, Dickson, Kuhn, et al. (2010) which
revealed that gender, an internal BCF, is an important factor affecting the ability to self-
manage HF, but not self-carebehaviors. Moreover, this review has found that many factors
that may affect self-care remain understudied (e.g., living patterns, sociocultural, and
developmental state).

External factors

External factors (health care system, family system, and availability of resources) have been
studied for their direct effect on HF self-care, but not on abilities for HF self-care as has been
theoretically proposed (Orem, 2001). Moreover, past studies have combined internal and/or
external factors and self-care abilities without determining their independent contributions
which could support or refute hypothetically proposed relationships developed from
theoretical propositions. External factors studied have included social isolation and social
support, and number of cardiologist referrals. All of these factors have shown no significant
influence on self-care (Cameron et al., 2009; Chriss et al., 2004; Peters-Klimm et al., 2013)
with the exception of referrals to a cardiologist which found to be associated with higher
levels of HF self-care(Peters-Klimm et al., 2013). Because none of the studies reviewed were
guided by a conceptual framework, this may be a call to utilize current theoretical knowledge
to systematically study factors proposed to influence self-care.

Ability Effects on HF Self-Care

According to Orem (2001), SCA is “the power to engage in action to achieve specific goals.”
The selected basic human capabilities foundational to SCA are sensation, attention, learning,
perception, memory, work, exercise, and regulation of motivational and emotional process
(Orem, 2001). Complex cognitive skills are also proposed to be a powerful enabling factor to
SCA. The studies in this literature review examined executive function, memory,
attention/speed of processing, reasoning, visuospatial functions, language (Alosco et al.,
2014; Alwerdt, Edwards, Athilingam, O’Connor, & Valdés, 2013; Nordlund, Berggren,
Holmström, Fu, & Wallin, 2015), and health literacy (Peterson et al., 2011) among older
adults with HF. Impairment in executive function (e.g., problem solving, goal setting, and
decision making) has been not only detected among individuals with HF but also found to be
associated with reduced independence in instrumental activities of daily living such as
medication management (Alosco et al., 2014). In a cross-sectional study, Nordlund et al.
(2015) found that patients with HF demonstrated cognitive impairments in the domains of
speed and attention, episodic memory, visuospatial functions, and language comparing with
healthy individuals in spite of reporting no known cognitive disorders. Moreover, Alwerdt et
al. (2013) reported differences in memory and speed of processing between individuals with
and without HF, with individuals with HF displaying poorer performance in these cognitive
functions. When studying changes in cognition over time, Alwerdt et al. (2013) found no
significant difference between individuals with and without HF initially in reasoning ability,
but, over time, individuals with HF experienced more decline in this ability. The longitudinal
decline in reasoning ability was not found for memory or speed of processing.
The findings on cognitive impairments in HF by Alosco et al. (2014) and Alwerdt et al.
(2013) are also consistent with the Karlsson et al. (2005) study results indicating 12% of the
HF patients had poor cognitive function as determined by getting a score of less than 24
points (raw score) out of a possible 30 total points on the Mini Mental Status Examination
(MMSE) upon discharge. The MMSE has been a valid and reliable instrument that is
commonly used to screen for dementia through the assessment of multiple cognitive
dimensions including items that measure orientation, language, attention, visuospatial
construction, and immediate and short-term recall (Kline, Scott, & Britton, 2007). Of
interest, Karlsson et al. (2005) further reports that after 6 months of treatment, only 4% of
individuals with HF continued having cognitive impairments. Together, these studies suggest
that HF treatment may improve cognitive function, supporting the need for continuous
assessment of cognitive function throughout treatment. Using the MMSE-2 revised standard
version permits the calculation of an age and education-adjusted standardized Tscore which
allows the interpretation of an individual’s performance in comparison to their own age and
educational cohort’s normal distribution curve (Folstein, Folstein, White, & Messer, 2010).
Moreover, an educational and interventional follow-up should be provided when the
individual’s cognitive status assessment suggests these activities are appropriate.

Successful self-care requires purposeful decisions and behaviors based on knowledge and
skills (Riegel & Dickson, 2008). Learning has been theoretically proposed to be foundational
to the ability to produce self-care (Orem, 2001). Therefore, health literacy may also be
considered an important ability to perform self-care. In the Peterson et al. (2011) study, the
investigators found that 17.5% of the participants with HF had a low health literacy level.
These individuals seemed to be older, with lower socioeconomic status and a higher number
of comorbidities. Moreover, a low level of health literacy was associated with higher all-cause
mortality. Because health literacy is considered to be a modifiable risk factor for a poor
disease outcome, it would be preferable to adjust the management of HF in older adults based
on an assessment of their health literacy levels.

Heart Failure Interventions

Studies in this review used three interventions to enhance self-care: patient education and
support, case management, and telemonitoring. These interventions varied in their
specific self-care focus and the success of their outcomes with different subpopulations of
older adults.

Patient education and support

The strategies for patient education and support were outpatient education and computerized
information programs with or without a video program (Karlsson et al., 2005), education with
mutual goal setting or supportive measures for patients (Kline et al., 2007), and education
accompanied with DVD use (Boyde et al., 2013). These interventions focused on
enhancing self-care practices and knowledge relevant to medication management, low sodium
diet, fluid restriction, symptoms management, exercises, and weight monitoring (Boyde et al.,
2013; Karlsson et al., 2005; Kline et al., 2007).

The strategy effectiveness of outpatient education combined with a computerized information


program was reported on by Karlsson et al. (2005) in their randomized control trial (RCT)
with a study sample of 90 hospitalized older adults with HF. The participants completed a
developed questionnaire concerning knowledge about HF. Cognitive function was also
assessed at the beginning of the study using the MMSE. Patients in the intervention group
received regular verbal and written information from nurses about HF in combination with
utilization of a computerized information program with or without a video information
program. The patients in the control group received the usual primary health care. After 6
months, HF knowledge and cognition were again assessed. The results showed increased
knowledge about HF among women in the intervention group in comparison with all men and
other women in the control group.

In contrast to the success in knowledge outcomes in the patient education program, a


comparison of supportive education and goal-setting interventions has found significant
differences in the confidence of individuals to manage their HF. Kline et al. (2007) used a
repeated-measure design to study these interventions in home health. In the supportive
educative program, nurses provided information about strategies to self-manage HF and
offered some support such as reviewing the patients’ support system, and developing plans
for referral to health care providers when needed. In the mutual goal-setting approach, nurses
and participants developed goals and means to attain them. Participants in both groups
completed a questionnaire to measure their confidence in understanding the strategies of
managing HF and a separate questionnaire testing confidence in their ability to manage HF.
Comparing the outcomes of a supportive educative program and a goal-setting intervention
revealed no significant difference in patients’ understanding related to HF management (Kline
et al., 2007). On the contrary, the supportive educative program improved the participants’
confidence in their ability to manage HF.

More recent studies have added to our understanding of how to improve knowledge,
confidence to manage self-care, and adherence to self-care in older adults with HF. Boyde et
al. (2013)used a self-care manual combined with a DVD to improve patients’ knowledge
in self-care and their adherence to self-care behaviors. Self-care was measured using the Self-
Care of Heart Failure Index (SCHFI; Riegel et al., 2004) consists of three subscales to
measure self-caremanagement, self-care maintenance, and self-care confidence. The results
were improvement in self-care management (e.g. symptom management), maintenance
(adherence to low salt diet and medication regimen), and confidence in the ability to manage
HF.

Case management

A case management intervention was used in one study to enhance self-care. Similar to the
patient education and support intervention, this intervention had a specific focus
exploring self-care and HF outcomes.

In the Peters-Klimm et al. (2010) study, the case management program consisted of two
strategies to improve self-care as measured by the European Heart Failure Self-Care Behavior
Scale (EHFScBS) which is a valid and reliable tool (Jaarsma, Árestedt, Måtensson, Dracup, &
Strömberg, 2009). The EHFScBS consists of 12 items that reflect recommended behaviors
(e.g., daily weighing, fluid restriction) for individuals with HF. The two strategies used in the
case management program were telephone monitoring and home visits. Older adults with HF
received regular monitoring by telephone from physician assistants working in a
primary care setting over a year and during three home visits. The investigators found their
intervention was successful in improving in the adherence to HF self-care behaviors and
health outcomes (i.e., HF-related hospital admission; Peters-Klimm et al., 2010). These
researchers’ results were confirmed by Mantovani, Ruschel, de Souza, Mussi, and Rabelo-
Silva (2015) who tested the influence of receiving nurse-led home visits after hospital
discharge on treatment adherence among 32 patients with HF. The patients showed significant
improvement in adherence with HF self-careafter receiving three home visits over 45 days
after hospital discharge.

Telemonitoring

A telemonitoring intervention was used in multiple studies to enhance self-care. Similar to


other interventions, there was a focus on enhancing self-care and successful health outcomes
using diverse intervention methods.

Fursse, Clarke, Jones, Khemka, and Findlay (2008) used a clinical protocol for their 12-week
telemonitoring intervention with 29 older adults from a primary care center. A telemonitor
unit with a touch screen was used to enter data from attached devices that assessed blood
pressure, oxygen saturation, and weight. The protocol was developed to enhance the accuracy
of determining the patients who needed the intervention. The investigators determined the
interventions were successful in the reduction of blood pressure as a result of more
individuals seeking medication and medical advice.

In contrast to Fursse et al.’s use of a unit with touch screen for their telemonitoring
intervention, Lind and Karlsson (2013) developed a digital pen-based telemonitoring system
used with 14 individuals with HF over 12 months. The system reported vital signs, weight,
and medication intake using a digital pen and a daily health diary form. The system generated
an alarm when study participants reported abnormal values compared with certain limits
stored in the system. The clinicians checked the system daily, and if they detected any
deterioration related to HF (e.g., shortness of breath), they contacted the participant and
intervened accordingly. Study findings included that participants reported the system was
easy to use, facilitated contact with their clinicians, and increased their participation in
their care. Of particular interest is that hospital readmissions were prevented for all study
participants.

Providing additional knowledge on the effectiveness of telemonitoring interventions in


different age groups, Lemay, Azad, and Struthers (2013) compared older adults (75 years of
age and older) with younger adults’ (less than 75 years of age) hospital utilization and
outcomes following a telemonitoring intervention initiated prior to hospital discharge. The
purpose of the intervention was to help participants successfully transition from the hospital
to their homes by improving self-care and adherence to best practice guidelines. Expert nurses
monitored 594 study participants with HF by evaluating the data (i.e., vital signs and weight)
which were daily transmitted from the participants’ home monitors through a telephone line
to a central monitoring station. The usual duration of the intervention was 3 to 4 months,
followed by a reassessment of the participants to determine the need for continuation of the
intervention. The study results showed that there was no difference between older and
younger participants with HF in the number of interventions for abnormal vital signs or the
number of times that changes on the cardiac medication regimen occurred. Moreover, the
number of emergency room (ER) visits and hospitalizations did not differ between the two
groups. For the same duration of time (3 months), Evangelista et al. (2015) compared
standardized hospital discharge care with a remote monitoring system (RMS) of care for its
influence on HF self-care in older adult patients with HF (N = 21). The investigators found
that the patients receiving the RMS of care showed significant improvement in HF self-
care as measured by the SCHFI (Riegel et al., 2004) in comparison with older adults receiving
standardized care.

Interventional studies varied in their measured outcomes with few studies focusing on
specific self-care behaviors in older adults with HF. Those studies that were successful in
improving self-care behaviors used more than one strategy (Boyde et al., 2013; Peters-Klimm
et al., 2010). In several research studies that used the strategy of telemonitoring, the sample
size was small (Evangelista et al., 2015; Fursse et al., 2008; Lind & Karlsson, 2013) or the
program had unclear guidelines for the duration of telemonitoring follow-up (Lemay et al.,
2013; Lind & Karlsson, 2013). Despite these limitations, there was sufficient evidence that
telemonitoring can be easy to use for older adults with HF (Lind & Karlsson, 2013). It has
been concluded by investigators that telemonitoring programs enhance the patient’s ability to
monitor their vital signs, and successfully helped them to control blood pressure (Fursse et al.,
2008).

HF Health Outcomes

In recent years, the use of hospital readmission rate has become one of the most clinical
significant measures of the ultimate health outcome for individuals with HF. Furthermore, HF
hospital readmission rates are considered a hospital quality measure that is monitored
nationally by the Center for Medicare Services (CMS, 2013). The national U.S. 30-day HF
readmission rate was 23.2% (292,938 patients were readmitted out of 1,262,826) between
2009 and 2012 (CMS, 2013). The CMS compares the readmission rate of a hospital with the
national 30-day readmission rate and categorizes the hospital into one of three categories (i.e.,
no difference than U.S national rate, worse than U.S national rate, and better than U.S
national rate; CMS, 2013).

Many studies have been conducted with an interest in reducing HF readmission rates (Feltner,
2014). In one of the earlier studies, Sethares and Elliott (2004) used a case control design with
33 older adults in their case group and 37 older adults in the control group. They proposed to
examine the effect of a tailored message intervention on HF readmission rates. The patients in
the case group completed a scale to assess perceived benefit and barriers to HF self-
carebehaviors, and then if the patients agreed on barriers and disagreed with the benefits of
the behaviors, they received the tailored message. The results revealed that the intervention
was not effective in reducing HF readmission rates in the case group in comparison with the
control group. It was suggested that this finding may be because the intervention focused on
changing the beliefs of the participants with HF rather than focusing on the medical
management of the participants. Lind and Karlsson (2013) also used newer technology in the
form of a pen-based telemonitoring intervention over a 13-month study period to reduce
readmission rates among 14 older adults with HF with a history of a maximum of six hospital
admissions in the prior 12 months. In this intervention, the patients have a digital pen and a
health diary they use to report some values such as weight and symptoms such as shortness of
breath as well as behaviors (e.g., taking p.r.n. medications after being taught how to use the
equipment for 30-60 min by a nurse). This intervention was reported as acceptable and useful
for their participants who had a decreased rate of readmission.

Despite the successes of these few recent studies in reducing hospital readmissions, a
different approach to study design has recently been suggested which challenges scientists to
address known factors that influence hospital readmissions. In this literature review, three
studies were found that examined the factors that affect readmission rates (Schmeida &
Savrin, 2012; Sona et al., 2012) which have been reported as a high level of morbidity, a low
level of independent functioning, and multiple medication use (Sona et al., 2012).
Surprisingly, living alone, cognitive limitations, immobilization, and lack of social support
have not been associated with hospital readmission (Sona et al., 2012). At the state
level, Schmeida and Savrin (2012) analyzed state-level data of Medicare patients in 50 states
to explore the factors that predict high readmission rate among HF patients. According to the
results, these factors are more total days of care per 1,000 Medicare enrollees, high median
income, and high percentage of drug coverage. Moreover, it has been suggested that adding
socioeconomic factors such as poverty rate, educational level, and housing vacancy rate to
hospital readmission calculations may result in more useful results such as improving quality
of care (Nagasako, Reidhead, Waterman, & Claiborne Dunagan, 2014). It is also suggested
that race may also be an additional factor to consider as one study found that the length of
hospital stay and the number of performed procedures are affected significantly by race
(Wheeler et al., 2004). Using a qualitative approach, Enguidanos, Coulourides Kogan,
Schreibeis-Baum, Lendon, and Lorenz (2015) recruited six patients with HF and three with
cancer to explore the reasons for 30-day admission from the patients’ perspective. The
interviews revealed three themes that were lack of motivation and support for self-
careparticularly caregiver support, acceptance of the condition and desire for aggressive care,
and poor quality of care as well as access to care. Of particular interest is a more recent study
that suggests “30-day readmission” is not a good predictor of outcomes in patients with
HF. Kociol et al. (2013) compared “30-day readmission rates” and “total episode
of care inpatients days” to determine the best indicator of HF outcomes. Total episode
of care (EOC) inpatient days are defined as “the total hospital days including index admission
and any hospital days that are related to readmission within 30 days” (Kociol et al., 2013).
Although there was no association between 30-day readmission and decreased 30-day
mortality, better performance on the EOC was associated with decreased 30-day mortality.
Based on these results, the view of “30-day readmission rate” as an indicator for HF outcome
and management needs to be reevaluated.

Conclusion

This review identified a limited number of studies in older adults with HF regarding factors
affecting self-care, patient’s ability to perform the required self-care activities, interventions
to improve self-care, and a selected HF outcome. There are many factors influencing HF self-
carethat need to be further explored. Emotional, psychological, and cognitive assessment
should be carried out before and through the implementation of HF management programs.
Modifications for HF self-care interventions should be considered when provided to older
adults. More research is needed that address older adults’ experiences with HF and its
management to improve self-care and health outcomes.

Declaration of Conflicting Interests


The authors declared no potential conflicts of interest with respect to the research, authorship,
and/or publication of this article.

Funding
The authors received no financial support for the research, authorship, and/or publication of
this article.

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

Natasa Sedlar, Mitja Lainscak, Jan Mårtensson,

Anna Strömberg, Tiny Jaarsma, Jerneja Farkas

First Published February 7, 2017

Abstract

Background:

Self-care is an important element in the comprehensive management of patients with heart failure. The
European Heart Failure Self-Care Behaviour Scale (EHFScBS) was developed and tested to measure
behaviours performed by the heart failure patients to maintain life, healthy functioning, and wellbeing.

Aims:

The purpose of this review was to evaluate the importance of factors associated with heart failure self-
care behaviours as measured by the EHFScBS.

Methods:

Preferred Reporting Items for Systematic Review and Meta-Analysis guidelines were used to search
major health databases (PubMed, Scopus and ScienceDirect). Obtained associating factors of heart
failure self-care were qualitatively synthesised and the association levels of most commonly addressed
factors were further explored.

Results:

We identified 30 studies that were included in the review; a diverse range of personal and
environmental factors associated with self-care behaviours in heart failure patients were identified.
Age, health-related quality of life, gender, education, New York Heart Association class, depressive
symptoms and left ventricular ejection fraction were most often correlated with the EHFScBS score.
Consistent evidence for the relationship between self-care behaviours and depression was found, while
their association with New York Heart Association class and health-related quality of life was non-
significant in most of the studies. Associations with other factors were shown to be inconsistent or
need to be further investigated as they were only addressed in single studies.

Conclusion:

A sufficient body of evidence is available only for a few factors related to heart failure self-
caremeasured by the EHFScBS and indicates their limited impact on patient heart failure self-care.
The study highlights the need for further exploration of relationships that would offer a more
comprehensive understanding of associating factors.

Keywords Self-care behaviours, European Heart Failure Self-Care Behaviour Scale, systematic
review, heart failure

Introduction

According to estimates, 15m people are affected by heart failure (HF) in Europe1,2 and a further
increase in numbers is expected in future years due to improved treatment of acute coronary events
and an aging population. With increasing burden and strong association with high morbidity, mortality
and costs, HF is a major public health concern.3

A growing body of evidence supports the importance of HF self-care to prevent patient related
outcomes and to improve health-related quality of life.4,5 Despite the importance of HF self-careon
positive health outcomes, many patients with HF have inadequate self-care behaviours.6Individual
differences exist and are influenced by several factors, e.g. gender, educational level, income, co-
morbidity, knowledge of HF and social support.7–9 The influence of individual factors on patients self-
care is poorly investigated and available literature remains inconclusive. However, to optimally tailor
our educational and supportive interventions to improve outcomes, more knowledge is needed about
interplay between self-care behaviours in HF patients and associated personal and environmental
factors, i.e. socio-demographic (e.g. age, race, sex, marital status, living arrangements, income,
education), psychological, physical (health state) and social characteristics.

In order to measure the behaviours that HF patients perform to maintain life, healthy functioning, and
wellbeing the European Heart Failure Self-care Behaviour Scale (EHFScBS) was developed in
2003.10 The original version consisted of 12 items and was in 2009 reduced to a nine-item version
(EHFScBS-9) that showed supportive psychometric properties.11 This systematic review focuses on
the evidence of personal and environmental factors associated with self-carebehaviours in HF patients,
obtained in observational studies using the EHFScBS.

Methods
Search strategy

A systematic electronic literature search of PubMed, Scopus and ScienceDirect was conducted
according to the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA)
statement12 for the period between 9 June 2003 (when the EHFScBS-12 was first published) and 1
November 2015. Search terms: ‘self-care’ OR ‘self-care behaviour’ OR ‘self-care behavior’ OR
‘European Heart Failure Self-care Behaviour Scale’ OR ‘EHFScBS’ OR ‘EHFScBS-9’ AND ‘chronic
heart failure’ OR ‘heart failure’ were used. Alternative searches were conducted on Google Scholar,
contacts with experts and by hand-searching reference lists of relevant articles. Obtained papers
(n=2154; PubMed n=621, Scopus n=1295 and ScienceDirect n=238) were initially screened based on
the title and abstract. In the next phase, all relevant articles (n=74) were retrieved in full-text and
reviewed by two reviewers (NS, JF); disagreements were resolved through discussion or by consulting
a third reviewer (ML). A total of 30 studies fulfilled the inclusion criteria. A PRISMA flow diagram
shows the selection of papers for inclusion and exclusion (Figure 1).
Figure 1. Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) flow diagram
of study selection process.

Studies were included in the systematic review if they: (a) recruited patients with HF; (b) included
measures of self-care by using the EHFScBS-12 or the EHFScBS-9; (c) were observational studies
that examined the association of self-care behaviours and personal or environmental factors (at the
baseline); (d) were full reports published in English language.

Papers were excluded if they: (a) were randomised controlled trials; (b) were study protocols; (c) were
reviews, editorials; (d) used only some items or one subscale of the EHFScBS; (e) included only
descriptive results or analysed only selected self-care behaviours.

Assessment of risk of bias


Risk of bias in individual studies was assessed by two independent reviewers (NS, JF) using the risk
of bias tool for observational studies from the Agency for Health care Research and Quality (the
revised RTI Item Bank to Assess Risk of Bias and Confounding - the item bank, developed at RTI
International).13 Eight items to assess selection, performance, attrition, detection and reporting bias
were applied for the scope of this review (see Supplementary Material, Appendix 2(a)). Based on
assessment across key domains and one item to assess overall quality of a study, overall bias of
individual study was rated as low, medium or high. A study was labelled as having a low risk of bias
in the case that no key domains were rated as unclear or negative, moderate risk of bias in the case of
up to two domains rated as unclear or negative and high risk of bias if three or more domains were
rated as unclear or negative. Disagreements between reviewers were resolved by discussion or
consultation with a third reviewer (ML). Confounding was assessed separately with three items (see
Supplementary Material, Appendix 2(a)); when scoring the third item, studies controlling for variables
in minimally two out of three domains (demographics or other individual characteristics, clinical
characteristics, characteristics of environment) were rated as having minimised the risk of bias related
to confounding.

Of the included studies the overall risk of bias (see Supplementary Material, Appendix 2(a) and 2(b))
was either low or medium. Selection bias occurred in two studies,14,15 where strategy for recruiting
participants differed across individuals; six studies11,16–20 failed to provide sufficient information.
Based on the descriptions in methods sections, studies were free of performance bias. Attrition bias
occurred in four studies; one study21 had a different length of follow-up across participants, while
three studies22–24 had loss to follow-up higher than 20% (Cochrane standard for attrition)25 and did not
assess the impact. Non-adequately addressed loss to follow-up in these studies also imposes a risk of
detection bias that was partially identified in another study26using the measure created for the study.
Reporting bias was not detected in selected studies as the outlined outcomes were reported and
potential unplanned analyses seemed appropriate.

Risk of bias related to confounding was recognised in four studies,23,27–29 that failed to take important
confounding variables into account.

Data extraction

Data concerning study design, participants and outcomes were extracted using a predesigned data
extraction form. Relevant data extracted for study design included country undertaken, sample size,
setting and version of the EHFScBS used with corresponding reliability coefficient (Cronbach’s
alpha); participant characteristics included age, gender, New York Heart Association (NYHA) class,
left ventricular ejection fraction (LVEF); relevant outcomes included detailed information on
addressed correlates of HF self-care (i.e. depression, social network, comorbidities) and their
association with HF self-care behaviour score (instruments used, type of statistical analysis,
association with HF self-care).

Data analysis

As identified studies were heterogeneous in aims, participant characteristics, settings, measurement


tools and outcome variables, framework-based synthesis of the extracted factors related to HF self-
care was performed. The categories of variables were adapted from Wilson and Cleary’s conceptual
model of health-related quality of life.30 The model proposes six categories of the physical,
psychological and social variables that are directly or indirectly related to health-related quality of life:
individual characteristics, biological and physical characteristics, symptom status, general health
perceptions, functional status and environmental characteristics. The same conceptualisation of
categories was used in our study as a basis for grouping of the extracted factors related to HF self-care.
Most commonly addressed factors were further examined. Results regarding their association with
HF self-care behaviour were considered consistent (according to statistical significance
of p<0.05),31 when demonstrated in at least 75% of the studies. In order to compare the results
obtained by different types of statistical analysis (methods to compare group means or/and
correlational analysis or/and multivariate analysis) absolute correlation coefficient and beta
coefficients as reported in the studies were used as the measures of association. For studies where
independent-groups t-test was performed, squared point-biserial correlations between the group
membership and the dependent variable were calculated. In studies that performed analysis of variance
(ANOVA), eta squared was calculated as an estimate of the degree of association. In both cases,
square roots of obtained values were used. Unstandardised regression coefficients were standardised.

As a measure of internal consistency values of Cronbach’s alpha coefficient above 0.70 were
considered satisfactory.32

Results
Description of studies
Among 30 studies that were included in the qualitative synthesis there were cross-sectional studies,14–
18,26–29,33–38
cross-sectional validation studies11,19,20,39–44 and prospective cohort studies.21–24,45,46 Studies
were performed in Europe (Germany, Greece, Iceland, Italy, the Netherlands, Poland, Spain, Sweden,
UK), Middle East (Iran), Asia (China, Japan, Korea), USA and Canada in a range of settings
(hospitals, outpatient clinics, primary care, other). Studies included 60–2592 patients (NYHA class I–
IV), with a mean age 57–82 years and 38–79% were men. The LVEF (%) was assessed in 18 studies
and ranged from 21–54% (Table 1). In total 16 studies used the 12-item EHFScBS-12 and 14 studies
used the nine-item version EHFScBS-9 (Figure 2).

Table 1. Description of studies addressing factors associated


with self-care behaviours in heart failure (HF) patients measured by
the European Heart Failure Self-Care Behaviour Scale (EHFScBS).

Table 1. Description of studies addressing factors associated with self-care behaviours in heart failure
(HF) patients measured by the European Heart Failure Self-Care Behaviour Scale (EHFScBS).
COACH: Coordinating Study Evaluating Outcomes of Advising and Counseling in Heart Failure;
COH: prospective cohort study; CS: cross-sectional study; Hosp: hospital; IQR: interquartile
range; LVEF: left ventricular ejection fraction; Me: median; NYHA: New York Heart
Association; OPC: outpatient clinic; Oth: other; PC: primary care; SD: standard deviation;
VALID: cross-sectional validation study.

View larger version


Figure 2. Number and version of the European Heart Failure Self-Care Behaviour Scale (EHFScBS) used
by the publication year.

Mean HF self-care score ranged from 18–34 on the EHFScBS-9 and from 24–34 on the EHFScBS-12
(Supplementary Material, Appendix 1). Reliability coefficient for the total scale was reported in 18
studies and ranged from 0.66–0.80 for the EHFScBS-9 and from 0.66–0.82 for the EHFScBS-12
(Table 1).

Further analysis of association levels included studies addressing relationship of HF self-


careoperationalised by the EHFScBS and: age (11 studies), health-related quality of life (eight
studies), gender, education and NYHA class (seven studies), depression (six studies) and LVEF (five
studies).

Association with HF self-care

Table 2 shows factors included in each predefined category and the number of studies that considered
their association with HF self-care (at the baseline).

Table 2. The number of studies that reported on factors associated


with self-care behaviours in heart failure (HF) patients measured by
the European Heart Failure Self-Care Behaviour Scale (EHFScBS)-
12 or the EHFScBS-9.
Table 2. The number of studies that reported on factors associated with self-care behaviours in heart
failure (HF) patients measured by the European Heart Failure Self-Care Behaviour Scale (EHFScBS)-12
or the EHFScBS-9.

CHF: chronic heart failure; COPD: chronic obstructive pulmonary disease; LVEF: left ventricular
ejection fraction; NT-pro-BNP: N-terminal pro B-type natriuretic peptide; NYHA: New York
Heart Association.

View larger version

In general, studies varied in addressed factors related to self-care behaviours in HF patients; many of
factors were addressed only by one or two studies, while most commonly addressed factors were
investigated in 20–40% of studies at most: age (11 studies), health-related quality of life (eight
studies), gender, education, NYHA class (seven studies), depression/depressive symptoms (six
studies) and LVEF (five studies). More than half of the studies addressing gender, education, NYHA
class, health-related quality of life as associating factors of HF self-care found statistically non-
significant (p>0.05) associations. On the other hand, more than half of the studies addressing age,
depression, LVEF as associating factors of the HF self-care found statistically significant (p<0.05)
associations (Figure 3).

Figure 3. Most commonly addressed factors associated with self-care behaviours in heart failure (HF)
patients measured by the European Heart Failure Self-Care Behaviour Scale (EHFScBS)-12 or the
EHFScBS-9. Statistical significance level p<0.05. Studies addressing age, gender, education, left
ventricular ejection fraction (LVEF), New York Heart Association (NYHA) mostly used the EHFScBS-
12. Studies addressing depression and quality of life used the EHFScBS-12 and the EHFScBS-9 with
similar frequency.

Considering association consistent (according to statistical significance of p<0.05) when demonstrated


in at least 75% of the studies,31 the evidence for consistent significant association between HF self-
care behaviour and depression was found. NYHA class and health-related quality of life showed
consistent non-significant association with HF self-care behaviour according to this definition. On the
other hand, evidence for inconsistent associations between HF self-care behaviour and other selected
factors (age, gender, education, LVEF) was found (proportion of studies reporting statistically
significant or statistically non-significant results not reaching 75%) (see Figure 3). Most of the
correlation and beta coefficients are distributed between zero and 0.3 which indicates negligible or low
associations.
The detailed study description (study characteristics and reported outcomes) is available in the
Supplementary Material, Appendix 1.

Discussion

This systematic review evaluated studies that used the EHFScBS, with specific emphasis to identify
factors associated with self-care in patients with HF. Reviewing the evidence from 30 studies using
the EHFScBS, a diverse range of personal and environmental factors were identified (Table 2).
Overall, depression demonstrated significant and consistent low association with self-care behaviour
whereas NYHA class and health-related quality of life were consistently non-significant in this
respect. The analysis also highlights the unmet need in the field, namely the lack of evidence on
associating factors/predictors for self-care behaviour operationalised by the EHFScBS. Even adding
data that are collected with other instrument measuring self-care, such as Self Care of Heart Failure
Index (SCHFI)47 this gap seems to exist.48 Therefore, adequately powered and designed studies are
needed to identify patient characteristics that predict performance in terms of self-care. Regarding the
HF self-care behaviour scale used, generally, the study provides evidence for satisfactory reliability of
both versions of the EHFScBS.

Many of factors related to HF self-care behaviours were studied in single studies. Therefore,
conceptually similar factors were merged into predefined categories in order to summarise the
findings. The results indicated that individual characteristics (demographics), biological, physical
characteristics (comorbidities), general health perceptions (health-related quality of life), functional
status (NYHA class) and characteristics of the environment (use of healthcare) were studied most
extensively (Table 2). Likewise, Carlson et al.,49 identified similar predictors (demographics,
comorbidities, physical and social functioning) of overall perceived health. They were also using the
Wilson and Cleary model30 as a conceptual framework. Similar models, linking physical,
psychological and social factors, might therefore give a useful framework for theory-informed
research on predictors of HF self-care as measured by the EHFScBS.

The relationships between HF self-care operationalised by the EHFScBS and age, quality of life,
gender, education, NYHA class, depression and LVEF were most frequently investigated. We found
inconsistent relationships between HF self-care and patient characteristics (age, gender, education,
LVEF) as the number of studies that found a significant association was similar to the number of
studies reporting non-significant associations. In principle, this may be due to false positive studies,
false negative studies or variability in association among different populations. Herein, it is important
to note that the statistical significance is dependent on the sample size, i.e. with the larger sample size
it is possible that weaker correlations can reach statistical significance. However, low association
levels (between zero and 0.3) indicate that these factors have limited impact on patient self-care as
measured by the EHFScBS. This could reflect the notion that factors other than age, gender, education
and LVEF have more influence on the ability to perform self-care behaviours. Nevertheless, future
research in an adequately powered sample should give attention to their role as confounders or
mediators for the associations between HF self-care behaviours and other associating factors. Results,
however, should be interpreted with some caution because association between selected factors and
HF self-carewas reported by 20–40% of included studies, which reduces the statistical power of our
findings.

The significant relationship between self-care measured by the EHFScBS and depression was
consistently found in four14,15,35,45 out of five studies that studied this relationship. Better self-
care behaviour was found to be associated with fewer depressive symptoms or lower depression
severity. Individuals with depression may have distinct problems in performing self-care due to
impaired motivation and it is also known that HF patients with depressive symptoms might not be
optimal candidates for ‘conventional’ self-care interventions.50 However, obtained low negative
associations between depression and HF self-care show, that depression might not have such an
important role in poor HF self-care or that this relationship might not be so straightforward as
assumed. Similar findings were obtained in recently published meta-analysis on psychological
determinants of HF self-care48 (r=−0.19, p<0.001), where they were partially attributed to
methodological differences in assessment methods and depression measures which could be the case
in our study as well.

We also observed that consistently non-significant associations were found with health-related quality
of life. This on one hand can be expected since previous validation studies reasoned that these are
different concepts.11 On the other hand, consistently non-significant association between NYHA class
and HF self-care behaviour indicates HF self-care behaviours have a weak impact on NYHA class.
Without significant improvement in cardiovascular functioning, no change in health-related quality of
life would be expected. As a result, if self-care cannot bring significant improvement in functioning,
health-related quality of life would not improve. However, based on our study we cannot conclude
whether this relationship is influenced by some other factors. According to some recent
studies48,51,52 psychological (subjective) factors, such as perceived self-care confidence, self-
efficacy, self-care agency etc. might have an important role when explaining the nature of this
association. Moreover, along with perceived ability for HF self-care, perceived impairments due to HF
(i.e. perceived tiredness, perceived impairments in physical activity etc.) might be relevant as well.
Despite the notion that subjective factors might be important in untangling potential linking
mechanisms of health-related quality of life and HF self-care operationalised by the EHFScBS, or
could contribute towards better understanding of HF self-care behaviours in general, only a few of the
included studies focused on their possible links with HF self-care (Table 2, Supplementary Material,
Appendix 1).

Limitations

The main issue with the current analysis is the fact that included studies varied considerably with
respect to addressed associating factors; also, only a few factors related to HF self-carebehaviours
were investigated in a sufficient number of studies that allowed for a more in-depth analysis. This
however leaves potential for unknown confounding or modifying variables that can influence self-
care behaviour measured by the EHFScBS – i.e. psychological factors,48,53 some common barriers to
HF self-care,54 contribution of caregivers to HF patients’ self-care55 etc. Moreover, our analysis gives
no definite answers regarding standard patient characteristics, which are mostly included in studies as
controlling variables, and the nature of their association with HF self-care behaviour.

This article focused primarily on self-care behaviours operationalised by the EHFScBS. Therefore it
lacks the additional evidence on the topic that could be provided from studies using another
commonly used assessment tool (SCHFI),47,56 which also has a caregiver version57 and gives an
example of theory informed research.58,59 It is important to note that the EHFScBS and the SCHFI
measure different constructs of HF self-care, which should be taken into account when interpreting
results obtained by one or another instrument.

Furthermore, the identified studies were heterogeneous in design, reported variables and methodology
to assess associations between the EHFScBS score and potential predictors (Table 1, Supplementary
Material, Appendix 1), which limits the generalisability of findings. Methodological heterogeneity and
relatively low proportion of studies addressing selected associating factors reduces the statistical
power of our analyses. Also, since most of the included studies were cross-sectional it is not possible
to make any conclusions about direction and possible causality of associations.
Reviewing the methodological quality of observational studies is another aspect that needs to be
mentioned here; despite numerous appraisal tools being available in the literature, none of them is
widely accepted. Even though the overall risk of bias in studies was low (60% of all studies) or
medium (40% of all studies) and specific biases were recognised in relatively low proportion of
studies, this should be taken into account when interpreting the obtained results.

Finally, our results could have been affected by our search strategy, including only studies published
in English and referenced in electronic databases.

Conclusions

The current review identified a broad range of factors related to HF self-care behaviours measured by
the EHFScBS that were investigated so far; yet, a sufficient body of evidence is available only for a
handful and, even then, a significant and consistent association was found only for depression. Thus,
we believe that the next step in obtaining a more comprehensive overview of the associating factors
would be theory informed research that is currently lacking but could explain the relationship of
included factors with the self-care behaviours and help uncover associating factors that have not yet
been explored. Conceptualisation of categories of variables adapted from Wilson and Cleary’s
model30 used in this review could present the basis for future research.

Declaration of conflicting interest


The authors declare that there is no conflict of interest.

Funding
The authors acknowledge the project, Heart failure epidemiology in Slovenia: Prevalence,
hospitalisations and mortality, J3-7405, which was financially supported by the Slovenian Research
Agency.

 Implications for practice


 A sufficient body of evidence is available only for a few factors associated with heart failure self-
care as measured by the European Heart Failure Self-Care Behaviour Scale and their limited
impact is indicated. Further exploration of relationships that would offer a more comprehensive
understanding of associating factors is needed.
 Increasing understanding of heart failure self-care associating factors could be of great practical
relevance for healthcare providers and users as it presents the first step in determining specific
patients’ characteristics that need to be targeted in educational interventions aiming to promote
heart failure self-care.
 The findings could further support the existing recommendations60 for healthcare professionals
working with heart failure patients. Also, the skills necessary to facilitate the development of
patients’ self-care skills and adoption of self-care behaviours should be a part of the
curriculum61 for healthcare professionals.

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