74 PATIENT PERCEPTIONS OF QUALITY OF LIFE CHF MARCH/APRIL 2002

Review

Patient Perceptions of Quality of Life

and Treatment in an Outpatient
Congestive Heart Failure Clinic
In an effort to better understand patients’ definitions of quali- The issue of quality of life (QOL) in patients with
ty of life (QOL) and to determine which tools would be most congestive heart failure (CHF) has been addressed
appropriate for use in future studies, a descriptive study was frequently in the literature. Tools used to measure
done in a university-based congestive heart failure clinic. QOL usually consist of questions about the patient’s
Participants were asked a series of five open-ended questions ability to perform certain tasks, and a ranking is
regarding their perceptions of QOL during recorded inter- given based on the degree to which the patient is in-
views. Most patients equated QOL with the ability to perform capacitated. Standardized QOL tools can be adminis-
physical functions in the same way they did before developing tered to large populations and information can be
heart failure. They grieved for their former abilities and ex- extracted to make conclusions about the impact of
pressed lower self-esteem due to loss of independence from CHF on QOL. However, there may be factors that
physical limitations. The Short Form-36 and the Minnesota influence a patient’s perception of QOL that are ex-
Living With Heart Failure Questionnaire addressed the QOL tremely individualized and cannot be expressed in a
issues important to our patients. It is important for health standardized tool.
care providers to consider the patient’s perception of QOL The World Health Organization defines health as
when using quantitative tools for QOL measurement in clini- a state of complete physical, mental, and social well-
cal practice. (CHF. 2002;8:74–79) ©2002 CHF, Inc. being and not merely the absence of disease and in-
firmity.1,2 However, attempts to measure subjective
Sara Paul, RN, MSN, FNP; Nancee Sneed, RN, PhD, ANP parameters of “health” have created a semantic mine-
From the Medical University of South Carolina Heart field.3 Tools used to measure outcomes of health are
Failure Clinic and College of Nursing, Charleston, SC described as functional status, health status, health-
related QOL, or QOL. 3 Regardless of the name,
Address for correspondence: these tools are standardized for use in a global popu-
Sara Paul RN, MSN, FNP, Medical University of lation. The majority of outcome instruments contain
South Carolina Heart Failure Clinic, 169 Ashley a series of questions involving common items that
Avenue, P.O. Box 250341, Charleston, SC 29425 are applicable to a wide range of respondents. Physi-
E-mail: smcpaul@earthlink.net cal function and psychological well-being are the di-
Manuscript received November 7, 2000;
accepted April 24, 2001 mensions most commonly used to assess QOL on
standardized tools. Fewer investigators have evaluat-
ed other factors, such as social support, family, or
marriage in their studies, despite the evidence sup-
porting these as some of the most important factors
related to QOL.4–6 Concerns and opinions of a par-
ticular individual are not included. The question
arises as to whether these instruments depict the pa-
tient’s viewpoint, or rather, how well the patient
agrees with the instrument developer’s viewpoint.3
Outcome measurement tools commonly used to
evaluate QOL fall into one of four categories: gener-
ic outcome instruments, disease-specific outcome in-
struments, domain- or dimension-specific outcome
instruments, or patient-centered outcome instru-
ments. Generic outcome instruments are often
described as “health-related QOL” or “health sta-
tus” instruments. These tools generally contain, at a
PATIENT PERCEPTIONS OF QUALITY OF LIFE CHF MARCH/APRIL 2002 75

minimum, the domains of physical, mental, and so- second patient. Ruta et al.11 state, “If perceived QOL
cial health.2 Disease-specific outcome instruments depends on the gap between a person’s reality and
are created to evaluate key areas in the respondent’s his or her hopes and expectations, then a high per-
life that may be affected by the specific disease. Al- ceived QOL may stem from a low expectation.”
though it would seem that these tools would be more Variability in patients’ abilities to adapt to illness
sensitive to change than a more generic tool, their also influences their perception of QOL. Other fac-
narrow scope may mean that they miss unexpected tors that may affect the patient’s perception include
problems, such as adverse drug reactions.7 Domain- presence of social support, mental status, as in de-
or dimension-specific outcome instruments reflect a pression,14 and the degree to which medical treat-
narrow and clearly defined area. These tools con- ment has made them feel better. Additionally, age
centrate on very specific areas of health, such as psy- may play a role in adaptation to illness. Older pa-
chological well-being, activities of daily living, or tients may adapt better than younger patients be-
pain. 8–10 Patient-centered outcome instruments cause they have already worked, raised their families,
allow the respondents to choose for themselves the and perhaps have lower expectations regarding the
areas of their lives that matter to them.3 remainder of their lives, whereas younger patients
The patients’ own words are valuable in under- may have more to lose from being ill.15
standing QOL issues in heart failure. It is important In an effort to better understand our clinic pa-
for health care providers to consider the patient’s tients’ definitions of QOL and to determine which
perception of QOL when using quantitative tools for QOL tools would be most appropriate for use in fu-
QOL measurement in clinical practice. Physiologic ture studies, a descriptive study was done to gather
and physical measurements of health status describe information on patient perceptions of QOL using the
only limited aspects of the patient’s life,11 and do not patients’ own words. Patients answered a series of
necessarily have meaning and relevance in the con- open-ended questions to describe their perceptions of
text of the patient’s daily life. Calman12 has defined QOL. This manuscript explores the themes that were
QOL as “the extent to which our hopes and ambi- presented by the patients during these interviews.
tions are matched by experience” and has suggested
that the aim of medical care should be to “narrow
the gap between a patient’s hopes and expectations Study Sample
and what actually happens.” Steptoe et al.13 suggest A random sampling of 30 patients was chosen from a
that improving patients’ psychological adjustment to pool of 150 patients participating in a university-
their heart failure condition may improve their psy- based, multidisciplinary outpatient CHF clinic. The
chological well-being and QOL. study sample consisted of 17 males and 13 females
Scores on QOL measurement tools may be influ- who had been involved in the outpatient clinic from
enced by the etiology and duration of illness in pa- 1–42 months (mean, 19.2±9.85 months). Thirteen
tients with heart failure. For instance, a patient who participants were African American and the rest were
has had coronary artery disease and angina for years Caucasian. More than one half of the patients were
before developing CHF may be less decompensated unemployed, and another 20% were retired. Mean left
with his CHF than a patient who develops CHF fol- ventricular ejection fraction was 24.23%±7.2%, with
lowing a brief viral illness. The first patient has almost one half of the patients in NYHA functional
learned to slow activities and has decreased expecta- class III. Most patients had idiopathic cardiomyopa-
tions over time, whereas the latter patient has an thy, but ischemic cardiomyopathy accounted for about
abrupt decline in physical capacity. Both of these pa- one third of the patients. The majority of patients
tients may have the same degree of heart failure (i.e., were on angiotensin-converting enzyme inhibitors, di-
equal ejection fraction and New York Heart Associa- uretics, and digoxin. The Table describes the sample
tion [NYHA] functional class) and may be equally de- demographics.
compensated in their functional abilities, yet their
perceptions of QOL may be quite different. The pa-
tient with coronary artery disease may have lower ex- Method
pectations regarding the ability to remain active After the purpose of the study was explained to the
because he has had time to adapt to decreased activi- patients, they were asked if they were willing to par-
ty. The other patient, however, may still feel that he ticipate in the study. Family members or other guests
should be able to remain as active as he was prior to were asked to leave the room during the interview.
his illness. The first patient may score better on a Each interview was tape recorded with permission
QOL tool than the second patient because expecta- from the participant. During the interview, the partic-
tions for activity level are not as high as those for the ipant was asked a series of open-ended questions re-
76 PATIENT PERCEPTIONS OF QUALITY OF LIFE CHF MARCH/APRIL 2002

Table. Sample Demographics

VARIABLES SAMPLE (N=30)

Length of time in clinic 0–42 months (19.2±9.85)

Age 35–88 years (57.33±12.9)

Race
African American 13 (43.3%)
Caucasian 17 (56.7%)
Gender
Male 17 (56.7%)
Female 13 (43.3%)
Education 5–17 years
Employment status
Employed 3 (6.7%)
Unemployed (disability) 18 (60%)
Unemployed (no disability) 3 (10%)
Retired 6 (20%)

Marital status
Married 21 (70%)
Widowed 3 (10%)
Divorced 6 (20%)
Living arrangement
Living with spouse 19 (63%)
Living alone 5 (17%)
Living with sibling, children, grandchildren 6 (20%)

CLINICAL STATUS INDICATORS

Left ventricular ejection fraction (n=26) 10%–40% (24.23%±7.2%)

New York Heart Association class
I 1 (3.3%)
II 9 (30%)
IIIa 12 (40%)
IIIb 4 (13.3%)
IV 4 (13.3%)

Number of comorbidities
0 4 (13.3%)
1 8 (26.7%)
2 7 (23.3%)
3 5 (16.7%)
>3 6 (20%)

Etiology of heart failure

Ischemic cardiomyopathy 9 (30%)
Idiopathic cardiomyopathy 12 (40%)
Hypertension 4 (13.3%)
Other 5 (16.7%)

Medications
ACE Inhibitor 23 (76.7%)
Beta blocker 8 (26.7%)
Anticoagulant 12 (40%)
Diuretics (1 or more) 23 (76.7%)
Angiotensin II receptor blocker 6 (20%)
Digoxin 27 (90%)
Lipid-lowering agent 6 (20%)
Number of medications per day 3–32 (mean, 12.1)

ACE=angiotensin-converting enzyme
PATIENT PERCEPTIONS OF QUALITY OF LIFE CHF MARCH/APRIL 2002 77

garding his or her perceptions of QOL. The recorded Some patients felt that being physically active, and
interviews were transcribed and the data were ana- not being in the sick role, was important in their
lyzed by the interviewers. Answers to the questions lives. “What makes life worth living is when you are
were placed into categories according to the topic. not sick, you are not in bed, you can get up and do
The study was approved by the university’s Investiga- things. But if you can’t get up and do things and
tional Review Board prior to implementation. you are always sick in bed, that makes you have a
down feeling in life.”

Results Question 3: Which of the above items is affected by your

Because the questions were open-ended and patients heart condition?
were allowed to answer with their own thoughts, pa- Physical activity limitations related to their heart fail-
tients answered with more than one theme for some of ure prevented patients from interacting with family
the questions. The following pages describe the patient members as they would like to. Keeping up with
answers to the questions presented by the researchers. grandchildren was named most frequently as the ac-
tivity they regretted not being able to do. Interesting-
Question 1: What does the term “quality of life” mean to you? ly, some patients did not feel that their heart
Twenty-two of the participants (73%) responded to condition affected the above items, but rather comor-
this question with a theme that pertained to perform- bidities, such as arthritis or lung disease, interfered
ing physical functions. Most patients framed this in with the things that were important to them. “Since
the concept of being able to do the things they used this arthritis hit me about 6 weeks ago, my QOL has
to do before developing heart failure. “… I guess taken a plunge way down, almost to the point of my
being able to get up and do the things I used to be wondering sometimes why I am still here at my age.”
able to do. I can’t hardly do that no more.” Mental Patients expressed loss of normalcy with the inabili-
and spiritual health was linked to QOL in six (20%) ty to contribute to the family or community. They ar-
of the patient responses. Belief in God contributed to ticulated a loss of the sense of productivity in society
the quality of daily living and the ability to cope with and increased dependence upon others to meet their
adversity. Being a part of a church organization also self-care needs. “… My inability to get around and do
enhanced QOL. For one patient, being “worry-free” things on my own and having to depend upon other
defined the quality of one’s life. people.” Patients grieved over the loss of their past
Three of the patients (10%) responded that being abilities to function in their daily life without physical
able to take care of themselves enhanced the QOL. limitations. “I can’t even go to the grocery store with-
Self-care activities contributed to the presence of out either having a wheelchair or feeling like I’m
normalcy in one’s life. Shortness of breath with activ- about ready to die by the time I am done.” Many pa-
ities such as walking or showering impaired their tients expressed a relationship between their self-con-
ability to care for themselves and they were acutely cept and their physical ability to remain active. They
aware of the decrease in self-care independence. continued to envision themselves as they were prior to
The last theme that was mentioned was longevity developing heart failure, and they suffered disap-
of life. Interestingly, only three patients answered pointment whenever they tried to exert themselves be-
that living longer was associated with higher quality. cause they could not live up to their own expectations.
“I feel useless and inadequate because I cannot get
Question 2: What things about being alive are important around and do the things I used to be able to take care
to you? of, such as cutting the grass.” Acts of daily living, such
The dominant answers to this question included as playing with grandchildren, were difficult because
spirituality and family. Personal religion was de- of limited physical capability, and they felt that their
scribed as being very important to patients. Having lives could not be normal as long as they were im-
family nearby, such as children and grandchildren, paired. No patients indicated that spirituality was di-
was important to them as well. One patient de- minished by their heart condition.
scribed it as “the love of my family, my love for
them, friends, my church, my religion, my service Question 4: Given a choice, would you prefer better quality of
to God.” Another patient described it in the context life, even if it meant a shortened life span? Or would you pre-
of the disease: “Being with my family and to be fer living longer, even if the quality of life was decreased?
comfortable enough and not struggle for a breath, One half of the patients indicated that they would
which takes all the pleasure out of life for me.” prefer to have better QOL, even if it meant a short-
Other issues included doing things for others, help- ened life span. Nine patients (30%) responded that
ing society, and maintaining social interactions. they would like to live longer, but one half of those
78 PATIENT PERCEPTIONS OF QUALITY OF LIFE CHF MARCH/APRIL 2002

added a disclaimer that they did not wish to continue think the element of surprise later would really kind of
living if they become a burden on their family or if floor a patient. You can get over anything once you
they were permanently dependent on life-support have been told; and once it has been explained to you,
equipment. The remaining patients were ambivalent the acceptance starts. Once you accept, you start to ad-
about the choice. just.” Another patient stated, “… to stay informed as to
my condition. Am I getting better? Am I getting worse?
Question 5: What results of the treatment you receive in Am I holding my own? That means a lot to me.”
this clinic are most important to you? Although only three patients mentioned educa-
Only seven patients (about 23%) indicated that re- tion about their disease process as an important re-
covery or improvement in their condition was an sult of the clinic, several patients mentioned that
important result of participating in the clinic. Some knowing which symptoms to report or how to self-
patients did, however, allude to the positive effects manage diuretics was important. Clearly, patients
of medications and the health care team’s ability to cannot know these things without being educated
adjust dosages and try different medications to im- about their disease management.
prove the patient’s clinical status. Thirty percent of
the patients stated that they expected to feel better
from the medications that were prescribed in the Discussion
clinic. Three patients specifically mentioned that Most patients equated QOL with the ability to perform
having fewer side effects from medications was an physical functions in the same way they did before de-
important result of clinic participation. Only two veloping heart failure. They seemed to grieve for their
patients mentioned breathing easier as an expecta- former abilities and expressed lower self-esteem due to
tion of participating in the clinic, but that is a very loss of independence from physical limitations. Mental
subjective symptom and most patients were not de- and spiritual health was linked to quality for six pa-
bilitated to that point. One patient mentioned that tients (20%), and yet spiritual health does not appear
he was no longer on the heart transplant list be- to be measured in any QOL tool found in the litera-
cause his condition had improved after receiving ture. Family interaction was an important aspect con-
care in the clinic. tributing to life quality for many patients.
Patients indicated that the personal attention
given to them by the multidisciplinary team was very Implications. There seems to be no shortage of
important to them. They were able to get help with patient opinions regarding QOL and the things that
such things as obtaining medications through phar- contribute to better QOL. Those opinions may vary
maceutical assistance programs. The medical plan of from patient to patient, or may even vary among re-
care was individualized for each patient, and they gions of the country. Standardized QOL tools are
recognized and appreciated this fact. created to glean information from a large popula-
Patients frequently commented on the quality of tion of patients, such as those involved in investiga-
care they received and expressed trust in the care tional drug studies. However, QOL is a very private
providers in the clinic. They recognized the exper- matter, and is difficult to measure or define global-
tise of the providers and trusted them to optimize ly. The clinician’s perception of disease usually cor-
medications appropriately, even if it meant they relates poorly with the patient’s perceptions of
would possibly feel tired for a period of time after health.16–18 It is important to treat patients individ-
starting such drugs as β blockers. Furthermore, pa- ually to help them meet their own expectations for
tients felt that being cared for in an institution that QOL and enlighten them as to the reality of what
offered clinical investigational drug studies was a they should be able to expect.
benefit to their overall treatment, and they trusted Many patients interviewed grieved for their for-
that the health care team would not place them at mer life, which was a time when their energy level
risk in potentially dangerous drug studies. As one was able to meet the demands of an active lifestyle.
patient succinctly stated, “If you don’t believe in your Health care providers need to assist patients to de-
doctor, then ain’t no need in coming to the doctor.” velop realistic goals that are within the boundaries
Patients stated that honest communication with their of what can be expected for each patient. Unrealis-
health care provider was an important issue in their tic activity goals will lead to disappointment and
care. Patients desired that the health care providers “be quite possibly depression. Perhaps a more useful
up front” with them regarding their condition and QOL tool would allow patients to state their own
prognosis. One patient answered this question, “Treat definition of QOL, and goals could be developed to
me as a person that can understand what you are talk- help each patient meet realistic expectations in
ing about and don’t hold back. Let me know, because I order to improve the quality of their remaining life
PATIENT PERCEPTIONS OF QUALITY OF LIFE CHF MARCH/APRIL 2002 79

span. Family members should be involved in the REFERENCES

discussion of QOL and should be present to hear 1 World Health Organization. Official Records of the World Health
the patient’s expectations. They live with the pa- Organization. Vol. 2. Geneva, Switzerland: WHO; 1948.
tient and can help the patient develop realistic and 2 Bowling A. Measuring Disease. Buckingham, Great Britain:
Open University Press; 1995.
achievable goals. Multidisciplinary outpatient heart 3 Tully M, Cantrill J. Subjective outcome measurement—a
failure clinics offer the flexibility of individualized primer. Pharm World Sci. 1999;21(3):101–109.
care planning and personalized knowledge of each 4 Palmore B, Knivett V. Change in life satisfaction: a longitudinal
study of persons aged 46–70 years. J Gerontol. 1977;32:311–316.
patient. This information can enhance patients’ 5 Neugarten G, Havinghurst R, Tobin S. The measure of life
QOL through individualized counseling to help the satisfaction. J Gerontol. 1961;16:134–143.
patients achieve the best QOL possible within the 6 Goodinson S, Singleton J. Quality of life: a critical review of
current concepts, measures, and their clinical implications.
limitations of their disease process. Int J Nurs Stud. 1989;26(4):327–341.
The Short Form-36 and the Minnesota Living 7 Guyatt G, Naylor C, Juniper E, et al. Users guide to the med-
with Heart Failure Questionnaire addressed the ical literature. XII. How to use articles about health-related
quality of life. JAMA. 1997;277:1232–1237.
QOL issues important to our patients. Content 8 Melzak R. The McGill Pain Questionnaire: major properties
analysis of the interview questions related to those and scoring methods. Pain. 1975;1:277–299.
things that make life worth living was compared to 9 Lawton M. The Phildelphia Geriatric Center Morale Scale: a
revision. J Gerontol. 1975;30:85–90.
the content on the tools to see if there were any 10 Mahoney F, Barthel D. Functional evaluation: the Barthel
glaring mismatches. The importance of family and index. Md State Med J. 1965;14:61–65.
being able to be with their family was the top re- 11 Ruta D, Garratt A, Leng M, et al. A new approach to the mea-
surement of quality of life: the patient-generated index. Med
sponse in two thirds of the sample. Both tools ad- Care. 1994;32(11):1109–1126.
dress this. Areas identified in the interview as being 12 Calman K. Quality of life in cancer patients: a hypothesis. J
affected by heart failure most often were ability to Med Ethics. 1984;10(3):124–127.
13 Steptoe A, Mohabir A, Mahon N, et al. Health related quality
work (n=8), interactions with family and friends of life and psychological well-being in patients with dilated
(n=6), recreational activities (n=6), and all physi- cardiomyopathy. Heart. 2000;83(6):645–650.
cal activity (n=6). There were no areas identified 14 Havranek E, Ware M, Lowes B. Prevalence of depression in
congestive heart failure. Am J Cardiol. 1999;84(3):348–350.
that were not on the tools, with the possible excep- 15 Grady K, Jalowiec A, White-Williams C, et al. Predictors of
tion of the area of faith in God and the ability to quality of life in patients with advanced heart failure awaiting
serve God or the church. This was of high impor- transplantation. J Heart Lung Transplant. 1995;14:2–10.
16 Lough M, Lindsay A, Shinn J, et al. Life satisfaction following
tance to 20% (six) of the sample. Although this area heart transplantation. J Heart Transplant. 1985;4(4):446–449.
may be subsumed within questions related to rela- 17 Priestman T. Measuring the quality of life during cancer ther-
tionships and the ability to go places, a specific apy. Update. 1986;32:987.
18 Thomas M, Lyttle D. Patient expectations about the success of
measure of the spiritual dimension of QOL is not treatment and reported relief from low back pain. J Psychoso-
present in either tool. matic Res. 1980;24(6):297–301.