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European Journal of Heart Failure 2002 4(3):283-287; doi:10.1016/S1388-9842(01)00213-6
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© 2002 European Society of Cardiology

A qualitative study of chronic heart failure patients’ understanding of their symptoms and drug therapy

Angie Rogersa,*, Julia M. Addington-Halla, Anne S.M. McCoyb, Polly M. Edmondsa, Alison J. Aberyb, Andrew J.S. Coatsb, J. Simon and R. Gibbsb

a Department of Palliative Care and Policy Kings College London, London, UK
b Department of Clinical Cardiology, National Heart and Lung Institute at Imperial College of Science Technology and Medicine, London, UK

* Corresponding author. Tel.: +44-020-7848-5579; fax: +020-7848-5565. E-mail address: angela.rogers{at}kcl.ac.uk


   Abstract
Top
 Abstract
1. Introduction
 2. Methods
 3. Results
 4. Discussion
 Acknowledgments
 References
 
Objectives: To explore patients’ understanding of their symptoms and the treatment of their heart failure.

Design: Qualitative analysis of in-depth interviews, using a constant comparative approach.

Subjects: 27 patients identified by Cardiology and Care of the Elderly physicians as having (a) symptomatic heart failure (New York Heart Association functional classes II, III and IV) and (b) a hospital admission for heart failure in the previous 20 months.

Results: Patients were aged between 38–94 years (mean 69), 20 were in NYHA functional class III or IV. All had at least one concurrent illness. Analysis of the data identified four key areas: patients had little understanding of the purpose of their medications, were concerned about both the quantity and combination of drugs they were prescribed, had difficulties in differentiating between the side effects of drugs and symptoms of heart failure, and had little knowledge to help them interpret and/or treat changing symptoms.

Conclusion: Providing patients with relevant information about their medications may help to reduce anxiety about the drugs they are taking. Acknowledging the symptoms associated with heart failure and the likely side effects of treatments might improve patients’ ability to interpret, treat or relieve symptoms.

Key Words: Heart failure • Symptoms • Drug therapy • Patient education

Received February 20, 2001; Revised June 29, 2001; Accepted September 7, 2001


   1. Introduction
Top
 Abstract
 1. Introduction
2. Methods
 3. Results
 4. Discussion
 Acknowledgments
 References
 
Modern drug therapy for chronic heart failure improves symptoms for many patients but does not cure them. Such therapies slow but do not halt the progressive deterioration of myocardial function. Drug therapy for heart failure involves complex medication regimens that can include the use of angiotensin converting enzyme inhibitors, beta-blockers and diuretics. Some patients will also take digoxin, aspirin, warfarin and anti-arrhythmic agents. Patients may be asked to monitor their weight and make appropriate adjustments to their diuretic therapy to prevent fluid overload or dehydration [1]. The successful management of chronic heart failure requires major changes to patients’ lives. Such changes may include altering diet, alcohol intake and smoking behaviors, and adapting everyday routines to accommodate regular exercise. Studies in the USA have shown that patients with chronic heart failure lack the knowledge and skills to undertake many of these tasks [2]. Many people with heart failure also require treatment for concurrent illnesses [3].

Non-concordance with treatment regimens accounts for between 20 and 58% of hospital admissions for heart failure [3,4]. Patients may experience difficulty in retaining information relating to their medications [5,6] and may not appreciate the relevance of information provided by clinicians [2]. This is illustrated by the fact that many patients treated for heart failure experience worsening symptoms for a relatively long time [7] prior to seeking medical advice. Patients who experience dyspnea and oedema have been shown to delay seeking medical treatment for longer than patients who experience chest pain [8]. Models of enhanced patient education have reported varying degrees of success in increasing patient compliance with medication regimens [6,9]. A recent study that sought to increase heart failure patients’ overall self care behavior found that even intensive interventions had little effect after three months [10].

In this paper we report findings from a qualitative study that explored patients’ experience of living with heart failure and focus upon patients’ understanding of their medical management and issues relating to the interpretation of their symptoms.


   2. Methods
Top
 Abstract
 1. Introduction
 2. Methods
3. Results
 4. Discussion
 Acknowledgments
 References
 
Unlike much quantitative research that seeks to draw conclusions that can be generalised, qualitative research aims to provide insight and meaning to everyday experiences. This study aimed to explore the experiences of people living with heart failure. This study used a theoretical sample and a constant comparative approach. A number of steps were taken to ensure the rigour of the study, including double coding of interview data, attention to deviant cases and the inclusion of a wide range of verbatim data [11].

2.1. Participants
Hospital inpatients and cardiology and care of the elderly outpatient clinics, in two inner city hospitals were screened for suitable patients. Patients diagnosed with symptomatic heart failure (New York Heart Association functional class II, III or IV), who had been hospitalised for this reason in the previous 20 months were identified and recruited (Table 1). Eligible patients were invited to discuss the effect that their heart failure had on their lifestyle in an open-ended interview.


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  		Table 1 Sample characteristics

 
Participants had a mean age of 69 years (range 38–94), 20 were male and 21 classified themselves as white. The sample had a mean left ventricular ejection fraction of 33.1% (standard deviation 14.8). In the 24 months prior to interview, participants were admitted to hospital with heart failure on a mean of 1.7 (range 1–8) occasions, and for any cause on 3.5 (range 1–8) occasions. Assessment at interview indicated that 7 participants were in NYHA functional class II, 12 in class III and 8 in class IV. All participants reported at least one concurrent illness. Information on the treatment received by patients was not collected systematically, nor was information on medication.

2.2. Sampling
A theoretical sample was drawn and information was sought from a range of patients with differing experiences of heart failure. This ensured that views from many different types of patients were represented in the data set. Following analysis of the first fifteen interviews, interviews were sought with older and female patients, to ensure their views were reflected in the study. Sampling and recruitment ceased when no new emergent themes were generated from interview data.

2.3. Interviews
Fieldwork for this study was undertaken over seven months in late 1998–1999. Thirty-seven patients were asked to take part in the study and 30 consented to be interviewed. There were no significant differences between responders and non-responders with regard to age, gender or NYHA classifications. Twenty-nine interviews were held at patients’ homes. AR and AA conducted the first three interviews jointly and agreed a list of core topics to be covered in subsequent interviews. The remaining interviews were undertaken by AA alone. Due to tape recorder failure, data from 3 interviews were lost and these interviews were excluded from subsequent analysis.

At the start of the interviews participants were asked an open question, ‘Can you tell me how your heart failure started?’ In response to this inquiry a number of ideas and concepts were developed as they occurred in the participant's narrative. This enabled both anticipated and emergent themes and ideas to be incorporated and subsequently explored. Interviews ranged in length between 30–90 min.

2.4. Data analysis
Following the constant comparison approach data collection and analysis were concurrent. Each interview was tape recorded and transcribed verbatim. Transcripts from each interview were read and the data categorised into codes. Categorised data for each subsequent interview was compared with previous interviews in order to generate new themes and broader categories (constant comparison) [12]. Analysis identified and incorporated deviant cases, those that contradicted the pattern of emergent ideas or concepts. For example, all but one participant described how prescribed medications had improved their symptoms. In the deviant case the patient attributed his symptom improvement to a herbal remedy.

Two researchers (AR and AA) independently coded 15 interview transcripts; areas upon which they did not concur were reconsidered and an interpretation agreed. Data analysis was assisted by the computer package QSR NUD.IST 4.0 (Non-numerical Unstructured Data Indexing Search and Theory-Building).


   3. Results
Top
 Abstract
 1. Introduction
 2. Methods
 3. Results
4. Discussion
 Acknowledgments
 References
 
All patients were taking some form of medication for their heart failure. Analysis of the data identified four key areas relating to symptoms and the use of drug therapy: the purpose of the drugs, concerns about drug therapy, difficulties in differentiating between side effects of drugs and symptoms of heart failure, and the interpretation and treatment of changing symptoms.

3.1. The purpose of drugs

I don't know if it's the condition or the medicine... I keep meaning to ask doctor what is the purpose of the pills? Are they to slow you down or what? (Patient 19).

Patients seemed to have a good understanding of what was happening to their heart, especially during periods of worsening breathlessness [13] but patients had little comprehension of what many of their heart medications were intended to achieve. All patients reported that diuretics increased their need to pass urine frequently. Most patients were confident in modifying the timing of these medications to enable them to leave home without the need for frequent trips to the lavatory or to sleep better at night.

And if we are going out for, if I've got to go to the hospital. Sometimes I'll leave it (diuretic) out until I come home. Or I might leave it out that day and keep an eye on the ankles’ (Patient 12).

Two patients directly attributed reduced breathlessness to taking diuretics.

I take my water tablet at night I absolutely insist on that. ... there was some doctor I had at hospital who said, he said Well, er, we'd much rather you didn't because why should you be getting up at night all the time? And I said ... I'd rather breathe than, er, I'd rather get up all night and breathe (Patient 1).

Most patients showed little understanding of the importance of fluid retention and only one patient reported being advised to increase or decrease their dosage of diuretics in response to fluctuations in weight.

3.2. Concerns about drug therapy
All the patients were taking some form of medication for their heart failure and some were taking medications for concurrent conditions. Patients reported taking between one and twenty-one tablets each day. They expressed concerns about both the high dosage and the combination of drugs that they were taking. Some patients were alarmed after reading the leaflets included in drug packaging. Patients were regularly prescribed drugs in doses well above those set out in leaflets and in combinations listed as contraindicated. While some patients reported raising these concerns with their doctors, others felt unable to do so or believed that if the doctor had prescribed them they must be appropriate.

The doctor gave me huge quantities of medicines with all the little bits of paper in. So I read those... Some of the dosages and things they give, they say two and a half milligrams and I'm on thirty! (I think) has something gone wrong here but then that's the start dose (Patient 4).

And on the digoxin tablets it says, ‘don't take with water tablets’. But I keep saying to Dr (name) about ‘em and he says There's loads of people on that combination, (Patient 7).

3.3. Side effects or symptoms
Patients reported 19 different symptoms, which they attributed to either getting older, the effects of their heart failure or as side effects of medications. The most common symptoms are shown in Table 2. Other symptoms reported by less than 5 patients each included: gout, constipation, nausea, cough, impotence, effects on eye sight, weakness, coldness, palpitations, hot flushes and unsteadiness in limbs. Participants found it difficult to distinguish between the effects of medication and symptoms of their condition:

Like all the different medications that they gave to me. And er, they all have side effects and things. So, one is very confused, how much of it is the side effects? (Patient 13).


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  		Table 2 Symptoms reported by patients as the effects of their heart failure, ageing or as side effects of drug therapies

 
This applied particularly to excessive tiredness and depressed or anxious mood:
I don't know if it is the tablets that I'm on but sometimes at lunch time at work I fall asleep and there are some times in the afternoon where I feel really bushed and I could really drop off to sleep again. Whether that's the effects of the tablets I don't know, I really don't know... And I do get wound up very easy now. I don't know again if it is the tablets that are doing it, but I find I haven't got the patience that I used to have. I do get mood swings now, and I never used to. I don't know if it is them or the condition (Patient 19).

Another patient reported excessive fatigue and weakness, nausea, dizziness, gout, impotence, depression, a tendency to excessive bleeding, feeling cold for much of the time and social isolation associated with the need to reduce his alcohol intake. He stated:

The bloody pills have ruined my life, they have, haven't they really? (Patient 29).

This confusion between side effects and symptoms posed a number of problems for patients in interpreting the significance of changing symptoms.

3.4. Symptoms and their interpretation
Patients were anxious about interpreting changes in their symptoms and when it would be appropriate to consult either their family or hospital doctor. None of the interviewees reported being given information about when unplanned consultations should be made and often tolerated symptoms for some time prior to seeking medical advice.

I spent two nights sitting in the chair sitting up-right. I couldn't lay down. ..... I'll wait until Monday and see the doctor (Patient 29).

Patients reported they had and would call for an ambulance when their symptoms became unmanageable.

So in the end I, I er rang the ambulance, not before I should have done (Patient 3).


   4. Discussion
Top
 Abstract
 1. Introduction
 2. Methods
 3. Results
 4. Discussion
Acknowledgments
 References
 
Qualitative research does not aim to produce findings that are necessarily representative of a wider population but to provide accounts that give insight into lived experiences, in this case the experience of people living with heart failure. The sample strategy employed in this study ensured a wide range of patient views were incorporated. A potential weakness of this study may be that patients were drawn from only two inner city hospitals, where treatment received may not reflect that of other hospitals.

Patients in this study lacked a basic understanding of the relationship between symptoms of their disease, the relief of symptoms by drugs and the side effects of heart failure medication. Patients appeared to have little comprehension of the purpose of the drugs they were taking and could not easily discriminate between symptoms of heart failure and side effects of drugs.

There are several potential reasons why patients have difficulty in differentiating heart failure symptoms from drug side effects and for patients' delays in seeking early medical assistance. First, a recent study of patients’ action during a cardiac event concluded that it was only when patients interpreted symptoms as cardiac in origin that medical assistance was sought [14]. Our findings suggest patients only sought medical help when worsening symptoms, usually increased breathlessness, were interpreted as unmanageable. Changes in weight, increased lethargy or weakness tended not to be interpreted as signs of worsening heart failure but might be interpreted as side effects of medication. Hence patients were unlikely to seek medical advice in response to theses cues. Second, patients may attempt to alter their behavior by increasing the time they spend resting and by reducing the number or intensity of activities in attempts to stave off medical consultations [15]. Third, the way in which information is given to heart failure patients by health care professionals and via drug package leaflets may be inadequate and misleading. The provision of apparently clear information on drug package inserts may not convey appropriate messages for this patient group. This is highlighted by the reported confusion that inserts caused when they appeared to contradict the physician's recommendations where patients were taking several contraindicated drugs.

Finally it remains possible that these patients experience cognitive dysfunction [16]. There has been little research concerning memory loss in patients with heart failure although recent evidence suggests that these patients may not experience significant short-term memory loss [17]. However, heart failure patients may experience some degree of memory loss as a consequence of age, co-morbid disease, their condition itself or its treatment (in particular the effects of previous cardiac surgery). In addition patients with chronic heart failure are known to experience high levels of depression and anxiety [18]. This may contribute to difficulties in patient's ability to cope with their illness and their understanding of how to manage their condition.

In order to optimally manage their condition patients with heart failure need a good knowledge of their condition, its typical symptoms and the significance of any changes in their symptoms. In addition patients need to understand the purpose and likely side effects of their drug therapy. Failure to seek prompt medical treatment in the light of changing symptoms, inadequate attention to diet and drug therapies have been associated with hospital re-admissions [19,20].

This study highlights that patients with heart failure continue to be confused about many aspects both of their condition and how to manage it. Methods need to be developed to provide patients with clear, on-going and accessible information about the symptoms of heart failure, their medications and likely side effects. This may help not only to improve and maintain patients' quality of life but also to reduce hospital admissions.


   Acknowledgments
Top
 Abstract
 1. Introduction
 2. Methods
 3. Results
 4. Discussion
 Acknowledgments
References
 
We would like to thank all the patients who agreed to be interviewed for this study. Our thanks also to Peda Bagger, Chris Bulpitt and Irene Higginson and two anonymous referees for their helpful comments on earlier drafts of this paper. We are grateful to the British Heart Foundation for funding this study.


   References
Top
 Abstract
 1. Introduction
 2. Methods
 3. Results
 4. Discussion
 Acknowledgments
 References
 

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  4. Michalsen A., Konig G., Thimme W. Preventable causative factors leading to hospital admission with decompensated heart failure. Heart (1998) 80:437–441.[Abstract/Free Full Text]
  5. Martens K.H. An ethnographic study of the process of medication discharge education (MDE). J Adv Nurs (1998) 27:341–348.[CrossRef][Web of Science][Medline]
  6. Cline C.M.J., Bjorck-Linne A.K., Israelsson B.Y.A., Willenheimer R.B., Erhardt L.R. Non-compliance and knowledge of prescribed medication in elderly patients with heart failure. Eur J Heart Failure (1999) 1:145–149.[Abstract/Free Full Text]
  7. Friedman M.M. Older adults symptoms and their duration before hospitalization for heart failure. Heart Lung (1997) 26:169–176.[CrossRef][Web of Science][Medline]
  8. Evangelista L.S., Dracup K., Doering L.V. Treatment seeking delays in heart failure patients. J Heart Lung Transplant (2000) 10(19):932–940.
  9. Rich M.W., Baldus D., Beckham V., Wittenberg C., Luther P. Effect of a multidisciplinary intervention on medication compliance in elderly patients with congestive heart failure. Am J Med (1996) 101:270–276.[CrossRef][Web of Science][Medline]
  10. Jaarsma T., Huijer H., Dracup K., Halfens R. Self-care behavior of patients with heart failure. Scand J Caring Sci (2000) 14:112–119.[CrossRef][Web of Science][Medline]
  11. Mays N., Pope C. Rigour and qualitative research. In: Qualitative Research in Health Care—Mays N., Pope C., eds. (1996) London: Br Med J Publishing Group.
  12. Strauss A., Corbin J. Basics of qualitative research (1990) Newbury Park: Sage.
  13. Rogers A.E., Addington-Hall J.M., Abery A.J., McCoy A.S.M., Bulpitt C., Coats A.J.S., Gibbs J.S.R. Knowledge and communication difficulties for patients with chronic heart failure: qualitative study. Br Med J (2000) 321:605–607.[Abstract/Free Full Text]
  14. Ruston A., Clayton J., Calnan M. Patients actions during their cardiac event: qualitative study exploring differences and modifiable differences. Br Med J (1998) 316:1060–1065.[Abstract/Free Full Text]
  15. Friedman M.M. Older adults symptoms and their duration before hospitalisation for heart failure. Heart Lung (1997) 26:169–175.[CrossRef][Web of Science][Medline]
  16. Brummett B.H., Babyak M.A., Barefoot J.C., et al. Social Support and Hostility as predictors of depressive symptoms in cardiac patients one month after hospitalisation. Psychosom Med (1998) 60(6):707–713.[Abstract/Free Full Text]
  17. Grubb N.R., Simpson C., Fox K.A. Memory function in patients with stable, moderate to severe cardiac failure. Am Heart J (2000) 140(1):1–5.[CrossRef][Web of Science][Medline]
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