Original article
Physical and emotional symptom burden of patients with
end-stage heart failure: what to measure, how and why
Cristina Opasicha, Alessandra Gualcoa, Stefania De Feoa, Massimo Barbierib,
Giovanni Cioffid, Anna Giardinic and Giuseppina Majanic
Objective Much of our understanding about symptom
burden near the end of life is based on studies of cancer
patients. The aim of this study was to explore physical and
emotional symptom experience among end-stage chronic
heart failure patients, looking for those symptoms mostly
related to their global health status.
Methods Forty-six patients with end-stage heart failure
compiled the following: Edmonton Symptom Assessment
Scale (ESAS) and Kansas City Cardiomyopathy
Questionnaire (KCCQ).
Results End-stage heart failure patients have many
complaints and poor global health status. The most
distressing symptoms reported were general discomfort
and tiredness followed by anorexia and dyspnea. The KCCQ
summary scores were highly correlated with ESAS
(r U S0.78; P U 0.0001). Among the domains explored by the
KCCQ, social functioning and self-efficacy showed the
lowest correlation coefficients with ESAS (r U S0.50;
P U 0.001 and r U S0.31; P U 0.003, respectively);
concerning the physical limitation domain, the symptom
score and the quality-of-life domain, the correlation
coefficients were as follows: r U S0.71 (P U 0.0001),
r U S0.75 (P U 0.0001) and r U S0.74 (P U 0.0001),
respectively. In the multiple regression analysis of ESAS
and KCCQ scores, general discomfort, depression and
Introduction
The acknowledgment that emotional and spiritual
elements are incorporated in the symptom burden trou-
bling patients with severe or terminal chronic heart fail-
ure is a crucial aspect in attempts to relieve or reduce the
clinical impact of the devastating progression of this
disease [1]. Approaches taking into account both physical
and psychological elements should be considered by the
physicians caring for such patients as an integrated part of
the terminal medicine, which includes palliative and
interdisciplinary care [1–6].
One step of palliative care is to relieve suffering, which
begins with a routine and standardized assessment of
complaints using validated instruments. This assessment
may identify the most distressing symptoms as well as
1558-2027 ß 2008 Italian Federation of Cardiology
Copyright © Italian Federation of Cardiology. Unauthorized reproduction of this article is prohibited.
anxiety were the symptoms that mostly related with the
results in the domains explored by the KCCQ. No
independent predictor was found among symptoms and
quality of life.
Conclusion General discomfort together with depression
and anxiety were the symptoms that were mostly related
with the physical limitation domain of global health
status, but did not influence the social functioning and the
self-efficacy domains. When ESAS is used together with
KCCQ, comprehensive and quantitative information on a
patient’s physical, emotional and social distress is provided.
J Cardiovasc Med 9:1104–1108 Q 2008 Italian Federation of
Cardiology.
Journal of Cardiovascular Medicine 2008, 9:1104–1108
Keywords: heart failure, palliative care, quality of life, symptoms
a
Salvatore Maugeri Foundation, IRCCS, Cardiology Unit, Scientific Institute of
Pavia, bPalliative Unit, Scientific Institute of Pavia, cPsychology Unit, Scientific
Institute of Montescano, Pavia and dDepartment of Cardiology, Villa Bianca
Hospital, Trento, Italy
Correspondence to Dr Cristina Opasich, Salvatore Maugeri Foundation, IRCCS,
Department of Cardiology, Via Maugeri 10, I-27100 Pavia, Italy
Tel: +39 0382 592611; fax: +39 0382 592099; e-mail: cristina.opasich@fsm.it
Received 7 January 2008 Revised 5 June 2008
Accepted 10 June 2008
other unreported symptoms, facilitate treatment and
enhance patient and family satisfaction [7–12]. Much
of our understanding about symptom burden near the
end of life is based on studies of cancer patients, whereas
symptom experience, and consequently, symptom
measurement, of end-stage heart failure patients has
not been studied as extensively.
The aims of this study were to assess the perception of
the severity of symptoms among patients with severe or
terminal chronic heart failure; to evaluate the feasibility
and reliability, in a cardiological setting, of the patient-
rated Edmonton Symptom Assessment Scale (ESAS),
developed for use in patients receiving palliative care,
and to look for those symptoms mostly related with the
patients’ global health status measured by the Kansas
DOI:10.2459/JCM.0b013e32830c1b45
 Symptom burden of end-stage heart failure Opasich et al. 1105

City Cardiomyopathy Questionnaire (KCCQ), an instru- Edmonton Symptom Assessment Scale

ment commonly used in the cardiological setting to The ESAS tool is designed to assist in the assessment of
measure the patient’s subjective domain. nine symptoms in cancer patients: pain, tiredness, nau-
sea, depression, anxiety, drowsiness, anorexia, general
Methods discomfort and shortness of breath [15–18]. The severity
Patients and procedure of each symptom at the time of assessment is rated on a
Forty-six inpatients with severe or terminal chronic heart visual analogue scale (VAS) from 0 (symptom absent) to
failure [III–IV New York Heart Association (NYHA) 10 (the worst possible severity of the symptom). Instruc-
class and frequent previous cardiac hospitalizations] were tions to the patient include exemplifications of the mean-
involved in this investigation. Their clinical character- ing of the words on the scales (i.e. depression ¼ sad or
istics are shown in Table 1. blue; anxiety ¼ nervousness or restlessness and drowsi-
ness ¼ sleepiness). The gold standard of the assessment
In order to exclude response bias due to cognitive impair- is the patient’s opinion of the severity. The symptom
ment, patients’ cognitive status was evaluated using the distress score (SDS) represents the summation of the five
mini-mental state examination (MMSE) [13,14]. means of each daily VAS (range 0–450 for all nine
variables).
The ESAS [15–18] was administered to the patients
twice daily (morning and afternoon) for 5 consecutive Kansas City Cardiomyopathy Questionnaire
days during their stay in hospital; hence, a relatively The KCCQ is a 23-item, health status, disease-specific
stable condition was reached. Patients also completed measure with established validity, reliability and respon-
the KCCQ [19,20]. siveness [19]. It quantifies symptoms (frequency, severity
and recent change over time), physical limitations, social
All patients signed a written informed consent before functioning, the patient’s sense of self-efficacy and qual-
assessment. ity of life. Moreover, the KCCQ summary score provides
a measure of global health status (range 0–100). Higher
Instruments scores indicate better health status. A validated Italian
Mini-mental state examination version is available [20].
The presence of cognitive impairment was initially
assessed by the MMSE in its validated Italian form Statistical analyses
[14]. Possible scores in the MMSE range from 0 to 30, The following statistical analyses were performed:
with lower scores indicating worse cognitive status [13].
Patients with a score less than 20 were excluded from (1) Descriptive statistics on sample characteristics;
further investigation. (2) Total daily VAS, calculated by adding the morning þ
afternoon mean daily VAS for each symptom;
Table 1 Clinical characteristics of 46 heart failure patients (3) x2 test for comparisons of percentages;
Men (%) 57 (4) Analysis of variance/multivariate analysis of variance
Age (mean
SD) (years) 71
11 (ANOVA/MANOVA) for evaluation of circadian and
Duration of heart failure (mean
SD) (months) 42
36
Causes:
between-day variability;
Ischemic (%) 41 (5) Linear and multiple regression analyses with ESAS–
Valvular (%) 24 KCCQ scores.
Other (%) 35
New York Heart Association Class III/IV 12/34
(number of patients) Data are reported as mean
1 SD. All tests of hypotheses
Left ventricular ejection fraction (mean
SD) (%) 27.8
15 were carried out using 0.05 as the level of statistical
Hospitalizations for heart failure during last 12 months 5
4.2
(mean
SD) (number) significance.
Medications:
Angiotensin-converting enzyme blockers or angiotensin 76
receptor blockers (%)
Results
b-Blockers (%) 61 No patient showed a cognitive impairment severe
Digitalis (%) 56 enough to be excluded from the study (MMSE <20);
Aldosterone antagonists (%) 69
Inotropes/vasodilators (%) 43 all the scores obtained from the patients could be
Charlson comorbidity index (mean
SD) 3.6
1.6 considered reliable.
Diabetes (%) 39
Chronic obstructive pulmonary disease (%) 28
Cerebral vasculopathy (%) 15 All patients completed the whole investigation.
Hyponatremia (%) 71
Cachexia (%) 16
Follow-up:
As to the ESAS, the percentage frequency distribution of
Heart transplant (n) 1 symptoms and the perceived severity of these symptoms
Death within 6 months (n) 38 in the patients are shown in Table 2. All the considered
Death within 1 year (n) 7
symptoms were complained of. Shortness of breath was

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 1106 Journal of Cardiovascular Medicine 2008, Vol 9 No 11

Table 2 Edmonton Symptom Assessment Scale: frequency with general discomfort, whereas depression, drowsiness,
distribution of symptoms and patients’ perception of their severity
anxiety and nausea were not.
Percentage Total daily VAS
of the patients (range 0–50 for
(n ¼ 46) each variable)
Patients had the following KCCQ scores: physical limita-
tion domain, 49.7
34.4; symptom summary score,
General discomfort 98 19.5
12.0 62.8
25.5; quality-of-life score, 58.8
29.7; social
Tiredness 87 18.3
10.6
Anorexia 86 16.2
12.3 limitation domain, 30.1
24.0; self-efficacy domain,
Shortness of breath 100 13.8
11.0 66.3
28.8 and summary score, 52.8
28.7.
Depression 50 9.1
13.0
Drowsiness 70 8.3
9.0
Anxiety 70 8.3
11.0 The KCCQ summary scores were highly correlated with
Pain 66 6.2
9.0 ESAS–SDS (r ¼ 0.78; P ¼ 0.0001). Among the domains
Nausea 35 1.4
3.0
SDS (range 0–450 for nine variables) 101.5
70.0 explored by the KCCQ, social functioning and self-
efficacy showed the lowest correlation coefficients
SDS, symptom distress score; VAS, visual analogue scale. with ESAS–SDS ( r ¼ 0.50; P ¼ 0.001 and r ¼ 0.31;
P ¼ 0.003, respectively); concerning the physical limita-
tion domain, the symptom summary score and the qual-
present in all patients, with general discomfort and tired- ity-of-life domain, the correlation coefficients were as
ness being the next two most frequent symptoms. As follows: r ¼ 0.71 (P ¼ 0.0001), r ¼ 0.75 (P ¼ 0.0001)
regards severity, the most distressing symptoms were and r ¼ 0.74 (P ¼ 0.0001), respectively.
general discomfort and tiredness followed by anorexia
and shortness of breath. The results of the multiple regression analysis of ESAS
and KCCQ scores are shown in Table 3, in which, on the
The ESAS scores were stable in heart failure patients. left, r2 indicates for each of the five items of the KCCQ
Only shortness of breath decreased significantly from the their association with the ESAS; on the right of the table,
first evaluation to a subsequent evaluation 4 days later the relative contribution (b value) of the resulting inde-
(4.2
1.3, 2.5
2, 2.3
2, 2.4
2, 2.2
2; F ¼ 16.7, pendent ESAS symptoms in the domains of the KCCQ is
P < 0.0001) (Fig. 1); neither circadian variability nor reported. In this analysis, general discomfort, depression
between-day variability was observed for any of the and anxiety were the ESAS symptoms independently
other symptoms. related with the results in the domains explored by the
KCCQ. No symptom among those explored by the ESAS
In regression analysis, performed on ESAS scores, general emerged as an independent predictor of the quality-of-
discomfort, which was the most troublesome symptom, life domain.
was significantly related with all other symptoms. But in
multivariate analysis, only tiredness (b 0.40; P ¼ 0.0003), Discussion
anorexia (b 0.31; P ¼ 0.0001), pain (b 0.17; P ¼ 0.028) and In this study, we found that patients with severe or
dyspnea (b 0.15; P ¼ 0.048) were individually associated terminal chronic heart failure may easily identify those

Fig. 1

ESAS score
Discomfort Tiredness Anorexia Depression Pain Shortness of breath Drowsiness Anxiety Nausea

5 5

4 4

3 3

2 2

1 1

0 0
1 2 3 4 5 1 2 3 4 5
Days


Edmonton Symptom Assessment Scale scores in 5 days. Each daily value is the mean of the morning and afternoon evaluations. Only shortness of
breath decreased significantly from the first to the subsequent evaluation 4 days later.

Copyright © Italian Federation of Cardiology. Unauthorized reproduction of this article is prohibited.


Table 3 Significant associations between five items of the Kansas
City Cardiomyopathy Questionnaire and the Edmonton Symptom
Assessment Scale-symptoms at multiple regression analysis
KCCQ r2 P ESAS b P
Physical limitation 0.72 <0.0001 General discomfort 0.73 0.001
Anxiety 0.44 0.01
Symptom score 0.64 0.0006 Depression 0.48 0.04
Quality-of-life domain 0.65 0.0004
Social functioning domain 0.43 0.0008 General discomfort 0.55
Self-efficacy domain 0.22 0.004 General discomfort 0.65
Summary score 0.76 <0.0001 General discomfort 0.62
Depression 0.42
Anxiety 0.41
ESAS, Edmonton Symptom Assessment Scale; KCCQ, Kansas City Cardiomyo-
pathy Questionnaire.
symptoms that significantly affect their perception of
disease and quality of life.
Among the physical symptoms, strikingly, shortness of
breath, though present in all patients, was not perceived
as the most distressing complaint, as if the long history of
the disease had brought a certain degree of acceptance
and habit. This finding may reorient the palliative care of
terminally ill heart failure patients, which is currently
predominantly focused on therapy to alleviate breath-
lessness (diuretics, oxygen, opioids, etc.). This manage-
ment focus is probably illustrated in our study in which a
pharmacological therapy may have reduced the severity
score of dyspnea recorded by the ESAS (Fig. 1).
Patients in the last phase of heart failure are troubled by
general discomfort, which predominantly results from
tiredness and anorexia. These two components are also
mutually interrelated: patients complain of scanty appe-
tite, different symptoms when eating (such as regurgita-
tion, dyspnea and abdominal swelling) and frequent
interruptions of the meal (mostly due to nausea, dizziness,
abdominal swelling and palpitation) [21]. Anorexia and
malnutrition cause cardiac cachexia, which in turn
increases weakness and induces a decline in functional
performance and disability. The progressive reduction in
functional capability, the loss of autonomy and the increas-
ing dependency may have devastating effects on the
quality of life of the patients, as well as on their careers.
The general discomfort, together with the emotional
symptoms of anxiety and depression (perceived in about
half of the patients), influences the global health status of
end-stage patients, once more highlighting that mood
and physical symptoms represent two different domains
(strictly linked to each other) in which patients’ suffering
is expressed [22–24]. Our results highlight the import-
ance of never considering physical symptoms as reliable
indicators of emotional suffering in patients: general
discomfort, depression and anxiety were found to be
independent constructs and should, therefore, be seen
as different manifestations of a single disease.
Copyright © Italian Federation of Cardiology. Unauthorized reproduction of this article is prohibited.
Symptom burden of end-stage heart failure Opasich et al. 1107
To measure symptom burden, we used the patient-rated
ESAS, which was developed for use in patients receiving
palliative care. Our results confirm those of Walke et al.
[18] who used the same scale to determine symptom
experience in chronically ill patients. The ESAS scale
represents a valid instrument for routine and standar-
dized assessment of complaints even in end-stage heart
0.02 failure patients. It was simple and easy to administer even
0.016
0.003
to our frail patients. We add to the Walke’s results that it
0.03 is reliable and reproducible; thus, it can substitute qual-
0.019 itative interview [25,26] and other more sophisticated
scales (i.e. the Memorial Symptom Assessment Scale
[27]).
Sex differences have been reported previously in chronic
heart failure patients’ quality-of-life assessments [28,29],
in which women had significantly lower scores than men.
In the present study, women with end-stage heart failure
communicated a higher global distress than men. Further
studies are needed to investigate this phenomenon,
which may be due to different psychological and physical
features in men and women.
From the relation between the two instruments used in
this study to measure patient’s subjective domain, the
finding of the association between symptoms (i.e. ESAS)
and quality of life (i.e. KCCQ) suggests that intervention
targeting on the independent symptoms could improve
several health-related outcomes.
The ESAS used alone could provide sufficient information
on the patient’s distress to better meet his/her needs, but
the domains of affective social support and of self-efficacy
(sense of control about treatment decision and participa-
tion in terminal care decision) remain unexplored. When
used together, these latter two instruments may provide
comprehensive and quantitative information on a patient’s
physical, emotional and social distress. This hypothesis
must be investigated in further studies.
According to these considerations, our answer to the
question ‘What to measure, how and why?’ could be that
the terminal care of heart failure patients should be
calibrated to physical, emotional and social distress,
independently assessed. Instruments, such as the ones
proposed here, may be useful both in a trial setting to
compare the efficacy of different palliative strategies and
in a bedside setting, not only to monitor symptom
experience and burden but also to begin empathic com-
munication (when needed, just ‘to break the ice’). Phys-
icians, in fact, often dislike discussing prognosis with
patients, in part because of the uncertain disease course;
patients do not frequently recall the conversation. But,
without an emphatic relationship and sensitive communi-
cation, heart failure patients could not openly report their
fears, concerns and symptoms and clinicians could not
adequately support their burden [5–8,12,28–30].
 1108 Journal of Cardiovascular Medicine 2008, Vol 9 No 11

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