Family Practice Advance Access originally published online on July 11, 2006
Family Practice 2006 23(6):624-630; doi:10.1093/fampra/cml036
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Can I come off the tablets now?' A qualitative analysis of heart failure patients understanding of their medication
DIPEx, Department of Primary Health Care, University of Oxford Oxford, UK
Correspondence to Kate Field, DIPEx, Department of Primary Health Care, University of Oxford, Old Road Campus, Headington, Oxford OX3 7LF, UK; Email: kate.field{at}dphpc.ox.ac.uk
Received 20 December 2005; Accepted 12 June 2006.
| Abstract |
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Objective. To examine whether heart failure patients' awareness of the purpose and side effects of their medicines equips them to participate in informed discussions about treatments.
Design. Qualitative interviews using a maximum variation sample were collected. Interviews were analysed using constant comparison.
Setting. Patients were interviewed throughout the UK, in 2003.
Participants. Thirty-seven men and women with heart failure aged between 35 and 85 years.
Results. All groups understood that medication was important and had developed methods (dosette boxes, alarm clocks) to cope. Three levels of awareness were identified. People at Level 1 did not know the purpose or possible side effects of their medication; those at Level 2 knew the names and main side effects and relied on doctors to provide detailed information. People at Level 3 understood their diagnosis and were committed to finding out about their illness.
Conclusion. Knowledge is not the only barrier to informed discussions of heart failure. Although everyone we interviewed knew that they should adhere to their medication regimes, only patients at Level 3 were equipped to discuss their treatment in detail. Patients need to be familiar with symptoms of heart failure, the purpose and side effects of their drugs. Medication reviews and specialist heart failure nurses offer opportunities to improve patients' understanding.
Keywords. Heart failure, medication awareness, purpose of medication, regimens, side effects.
| Introduction |
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Heart failure is the leading cause of hospitalization in developed countries.1,2 A lack of understanding about heart failure may mean that patients cannot recognize symptoms of deterioration at an early enough stage to avoid hospitalization.3 In the UK there are currently 75 heart failure specialist nurses working with patients and their carers in the home trying to reduce hospital admissions.
Qualitative studies have indicated that achieving a shared understanding between professionals and patients in heart failure is particularly challenging.46 Heart failure patients can experience depression, anxiety and bouts of confusion, and some may exhibit cognitive dysfunction.7 Because the incidence of heart failure increases with age (the average age of a patient at diagnosis in the UK is 76 years), memory loss is a problem.8 Most heart failure patients also have other chronic co-morbidity, such as diabetes mellitus and hypertension.9,10
Recent research from the United States has indicated that identifying what information would be most useful to patients and finding out more about patient characteristics is necessary so that self-care education is targeted more appropriately.11,12 Research from New Zealand found that some heart failure patients coped by using strategies of avoidance and disavowal to distance them from information that was unwanted, or which might be upsetting.13 If heart failure patients are to be helped more effectively to manage the condition, then their perspectives on medication and treatment need to be taken into account.
In this paper, we explore through narrative interviews how people with heart failure talk about their medication, including their awareness of its purpose and possible side effects. Three different levels of awareness are evident in the data, yet we argue that it is only patients at the highest level who are equipped to take part in informed discussions about heart failure with their doctors. By identifying different levels of patient understanding about medication, we identify the barriers to informed discussion in each group and consider how they might be overcome.
| Methods |
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Participants
Maximum variation samples14 are used in qualitative interview studies to include a broad range of participants' experiences. This qualitative sampling strategy is not intended to be numerically representative but to include the range of different factors that might influence people's experiences of heart failure. It was therefore important to include men and women of different age groups, social and ethnic backgrounds, people at different stages of heart failure (Table 1), people who were single (widowed) and married, those with co-morbidities, those who were/were not supported by heart failure nurses. The study explored how people at all stages of heart failure coped with the condition and managed their medication. Heart failure is a progressive disorder of the heart muscle that renders the heart incapable of pumping enough blood round the body during exercise or rest. Respondents included those recently diagnosed, those who could not recall being told that they had heart failure and people with valvular heart disease who described having been in and out of heart failure for years. We were guided in our sampling criteria by an expert advisory panel of patients, researchers and clinicians. People were invited to take part through GPs, cardiologists, specialist nurses and patient support groups.
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We did not seek access to medical records and do not know how respondents were classified according to NYHA (New York Heart Association) scales. Between February and October 2003, 37 patients with heart failure aged between 33 and 84 years of age were interviewed in their own homes by one of the authors (KF), an experienced qualitative researcher. People were encouraged to tell their stories of heart failure from when they first suspected they had a heart problem. Interviews lasted 45 to 120 minutes.
Data collection
The open-ended narrative interviews gave respondents as much time as required to talk about their illness and aspects of heart failure that mattered to them. Respondents were also prompted to consider specific topics, including medication, their awareness of side effects and their understanding of the purpose of medication. Interviews were copyrighted for inclusion on the DIPEx website of patients' experiences at www.dipex.org, where further analyses and video and audio clips from the interviews can be found as well as descriptions of the methods. The DIPEx site also contains collections on many other conditions including hypertension, heart attack and parents of children with congenital heart disease.
Analysis
Interviews were digital video or audio recorded and professionally transcribed verbatim. Each transcript was then checked, and then returned to the respondent for checking and to mark any sections they wished to be deleted from the interview before assigning copyright for use in research, publication, teaching and broadcasting.
Data were coded systematically using N6 software and analysed thematically using a modified grounded theory approach, incorporating constant comparison and exploration of deviant cases.15,16 The coding framework drew both on existing research about patient understanding of heart failure and its management, as well as emergent themes that developed as the research progressed.17 The different levels of medication awareness discussed in this paper were developed by two of the authors using the method of constant comparison, which identified emergent themes and considered meanings and significance. Each respondent was assigned to one of the three levels on the basis of their whole interview. Each transcript was then reconsidered according to the level assigned and examined in detail to establish whether there were common characteristics in the data.
| Results |
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Many respondents expressed uncertainty about what having heart failure meant, about how it differed from other kinds of heart disease and about whether they would recover. People often said they had a heart problem rather than heart failure. Some said a myocardial infarction (MI) had caused their heart failure while others attributed the condition to having lived too well or experienced hardship at critical points in their lives. People with co-morbidities such as diabetes, stroke or hypertension were often uncertain when heart failure had occurred.
Table 1 shows that most of the participants' medication regimens included a loop diuretic (typically frusemide), a beta-blocker and an angiotensin converting enzyme (ACE) inhibitor, as well as a statin and aspirin. Twenty were taking medicines for co-morbidities.
Everyone not only said that they felt they were managing their medicines properly but described their routines to ensure medication was taken at the right times. Several men said that they left the organization of pills, pill boxes and repeat prescriptions to their partners who were better organized.
Analysis of how respondents talked about their medicines indicated three levels of awareness, which have different implications for the consultation. These are discussed with extracts from the interviews. Characteristics of respondents in the three levels, including the age range of each group, are shown in Table 2.
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Level 1: Doing what I'm told
Of the 15 people in this group, 8 said that they weren't aware that they had heart failure, though they knew they had heart problems and so had agreed to participate in a heart failure study. The rest, including three with access to specialist nurses, said that though heart failure had been explained, they remained confused about its meaning. Others said they had been given information at inappropriate times such as after a surgical procedure in hospital or when they were too shocked by the diagnosis to take it in.
Most of this group were over 65 years old (see Table 2 for demographic characteristics) and all were hesitant when speaking about their medication. Characteristics of this level of understanding included not knowing either the purpose of medication nor being able to recognize the difference between the side effects of medication and the symptoms of heart failure. Several people with heart failure and co-morbidities were managing 15 pills or more a day and could not identify which illness their pills were for.
HF10: Yeah, well, you may, you may know what they're for, I'm not altogether sure I do... but um I take frusemidethat's for the heart, to sort of relieve my water.Um, lisinopril, I think that's for the heart; um. Isosorbide mononitrateI've got no idea what that's for. Thyroxinetwo lots of that thyroxine, er that would be for the thyroid. Glibenclamide, that's for the heart. AmiodaroneI don't know what that's forgot no idea these days. um. amlodipine, [pause]
Then I take an aspirin, and um. then at night cimetidine for the um stomach ulcer.
I: Ok and what do you take in the day for your diabetes?
HF10: Um, well the glibenclamide wouldn't it? I take two of those in the morning and two at lunchtime.
I: Do you know off-hand how many pills that is in a day you're taking?
HF10: I can tell you [laughs], um. 3, 4, 5, 6, 8, 9, 10, 11, um. and at lunchtime three, and at night one, so that's 15 isn't it? [HF10, 84-year-old man. Uncertain when HF was diagnosed, probably late 1990s.]
Note: medication names have been corrected in this extract.
People in this group usually categorized their medicines as either heart pills or water pills. More precise names were often struggled with and stumbled over. Even when the respondents had prepared a list of their medicines for the interview, they were often hesitant about pronunciation, and almost everyone requested a break from the interview to refer to pill packets or ask their partners for information.
Because people in this group did not fully understand heart failure, many had difficulty accepting that medication was the only treatment available for heart failure, which indicated that they did not fully understand their diagnosis. Several said they were surprised to learn that they would need medication for the rest of their lives.
HF35: [The GP] put me on the water tablets. He didn't tell me why he put me on the water tablets, he just seemed towhen he saw mehe seemed to be really shocked as if he didn't know how I got into that state, and he said, "Go straight home, go to bed. Take these tablets and I'll phone you and see how you are".(later in narrative) I went to see a house surgeon I think it is, or the one under the consultant, and he said to me, "How are you getting on?" And I said, "Oh, I'm fine, I'm really getting on well," and he said, "Yes, you look well," and I said, "Well, can I come off the tablets now?" And he said, "No." And I said, "Why not?" And he said, "Well you'll never come off the tablets".
I thought once I got better I wouldn't have to take tablets anymore. I never realized I'd have to take all this amount of tablets for the rest of my life. That's another thing that shocked me. [HF35, 53-year-old woman. HF diagnosed in 2000/1.]
People with this level of understanding were also uncertain whether they should consult their doctors about loss of appetite, persistent coughs and other discomforts. A 62-year-old woman thought her loss of appetite must be a side effect of something but didn't complain because she was pleased to lose weight.
HF07: My loss of appetite I haven't mentioned really, because I think it's, I know it must be a side effect of something, but just hopefully it will go away. I'm not complaining seeing as I've lost some weight! But it would be nice to sit down for a meal that I've cooked with the family. But at the moment I just don't, I don't feel like it. But just hopefully my appetite will come back. It's maybe my age as well. [HF07, 61-year-old woman, asthma and high blood pressure diagnosed in mid-1990s, HF diagnosed in 2001.]
Others seemed unaware of side effects sometimes associated with particular medicines. For example, an 86-year-old man said that he had had a persistent cough (a known side effect of his ACE inhibitor) for months. He had bought a cold remedy because he did not want to bother his GP.
Level 2: Leaving it up to your GP
The 13 respondents in this group ranged in age from 46 to 81 years and were less hesitant about the names of their medication than those in Level 1. However, most of them did not know what each of their pills was for. The majority of people at this level of understanding did not recognize the difference between side effects and heart failure symptoms (only one recognized the difference). Six had access to a heart failure specialist nurse (see Table 2).
Most of the group described good relations with health professionals and said they had received enough information about their heart failure for their needs. Some, like HF04 below, responded to a query about whether they had tried to discover more about heart failure with a statement that they trusted their doctors. People in this group also used the adage a little knowledge is a dangerous thing:
HF04:...when they told me I had er heart failure. I just found, that went to my own GP when I got, went for the results. And he said, "Your heart is enlarged," he said, "So obviously we'll have to keep a closer eye on you now". But I mean I didn't get any information, they didn't give me no leaflets or anything on it.I: Okay and have you, have you tried to find out any more about it since?
HF04: Well, no I haven't really because I trust my GP, I haven't tried, I mean if there's any new leaflets out or any new drugs he always, always keeps me informed, yes.
I: But have you been to the library or looked it up on the Internet or anything like that?
HF04: No, I haven't tried to look it up at all. I think sometimes a little knowledge is dangerous, you're better just in the dark and leaving it up to your GP to look after you. If you're happy with your GP it's a big help. [HF04, 59-year-old woman, HF diagnosed in 2001.]
People in this group clearly knew that medication was important. They understood that drugs had to be balanced to suit them, that beta-blockers had to be 'built up' slowly if they were to avoid feeling dizzy or nauseous and that they should watch their diet and monitor any weight or water gain.
Those under the care of specialist nurses described being monitored at home and said that they had been advised about medication. One man who said that he was told after an angiogram that he was ineligible for a heart transplant explained how his heart failure nurse had later reassured him that it was worth taking his medication:
HF18: Then I went to see my nurse and I told her what he'd said and she said, "Well there's always something that we can do", so I went to the hospital and spoke to the doctor there. And he said, "It's not the end", he said, "You could live 5, 10, 15 years on tablets alone, just keeping an eye, monitoring you and just giving you the right amount of drugs for this, that and the other". He said, "You may have swings, bad swings, good swings, you know, but basically we will keep you going. And who knows what in 5, 10 years, what new things may come up".So that was a little bit of hope, you know what I mean? Yeah, so it was thumbs up, yeah. But basically that was, and since then, you know, all I've done is just keep taking the tablets, and hopefullyyou've got to be realisticI'm 66, you know what I mean, I feel okay in myself. [HF18, 66-year-old man, HF diagnosed in 2002.]
Although more confident with the names and purpose of their drugs, most patients at Level 2 could not identify symptoms of deterioration and were uncertain what would happen as heart failure progressed. Several hoped to be offered a heart transplant when all medication options had been exhausted. Others thought that with the right medication and procedures, they could live for many years:
HF24: He [the consultant] prescribed the tablets and basically said that they worked quite well and he'd had experience of them working quite well and that they could improve the heart. But I don't think any promises were made at that point. And I still seem to be having tests so we'll just have to wait and see.I: What do you think will happen in the future?
HF24: I don't really know until we find out the results of this test. I suppose I could go on for years and years as I am now and nothing ever change, just keep taking the tablets. I really don't know. [HF24, 55-year-old woman. Believed her heart damage occurred in 2001 after a virus. HF diagnosed in 2002.]
Despite knowing more, these patients often described heart failure as being preferable to other kinds of disease, particularly cancer. A 73-year-old man considering death expected "to go out and that's it and to hell with the rest of the world, which is no bad way to go, let's face it. I mean cancer and all the rest of it would be ghastly".
Level 3: Candidates for concordance
Those whose knowledge of their medication went beyond acknowledging its importance were more confident when they spoke about heart failure. The nine people who could talk knowledgeably about their medication and its purpose were well equipped for informed exchanges with health professionals. However, these participants were hardly typical of all heart failure patients: they included a retired GP, a retired nurse and two men with their own copies of the British National Formulary. The age range of this group was between 35 and 66 years, which is comparatively young for a group of heart failure patients.
People in Level 3 acknowledged the uncertainties of the condition, and understood that managing heart failure involved being vigilant about their physical and mental state. As one woman explained, this had taken time but it had helped her to cope:
HF08: It is, there is a regime, but once you get to understand it, you begin to cope, and it comes naturally to you, and you just get on and do it. You see the signs and you think well that's a good sign, that's a bad sign. You do also lose your appetite, and my family were quite concerned because my appetite wasn't there and I wasn't eating properly and they felt I was going to be anorexic because I had lost so much weight, but then you feel better for it. You have to try and tempt yourself to eat a balanced diet, plenty of fruit and vegetables as you probably know. Um but you do tend to find life is different um physically different and you accept it and you understand it, its taken me well over 18 months to do to really cope with it now. [HF08, 69-year-old woman, diagnosed with dilated cardiomyopathy and HF in 2001.]
People realized that others might see them as taking an unusual level of interest in their illness, and some explained that they were not morbid about their health. Some suggested that there is almost a moral obligation to be well informed:
HF32: I think you should learn as much about it. I mean you don't go to them and say, "Now look here, I've read this and this is the way it ought to be done, chaps." That won't get you very far at all! But it's useful to be aware so that you can ask sensible questions. And you don't have to know all the medical terms, I mean I can't remember half of them and I don't know what some of them mean although I'm lucky, I did do a bit of Latin at school so you can work some of it out.I mean I don't sit there reading [the BNF] every day and thumbing through it lovingly like a sort of family Bible or something like that, but I do find it quite interesting. (I: Yes, okay). That's really all it is. It became a bit of a hobby because of all the stuff that was being shoved into me at various times. You know what I mean, what's this one? I mean why do they do that? Why not that one? Oh, I see, the side effects, yes, etc. So you link up all these things. [HF32, 55-year-old man. Cardiomyopathy and HF diagnosed in 1999. Liver transplant in 2000.]
This respondent resists the idea that there is anything morbid about learning about one's own health and makes it clear he is not an ordinary patient (for example his understanding of some Latin).
| Discussion |
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We have explored how 37 patients with heart failure talked, in narrative interviews, about their understandings of their disease, the purpose and side effects of their medication. Like other studies from the UK,5,6,11 United States16 and New Zealand,12,13 we found that many patients do not understand what heart failure means, and also, we have shown how even when patients work hard to take their medicines as directed, they do not necessarily understand what different drugs are intended for. Current levels of understanding suggest that few are equipped to understand the side effects of their medication or monitor changing symptoms of their condition. This absence of understanding of medication within the overall experience of heart failure may put many patients at a disadvantage when they meet their doctor or heart failure nurse.
The study has strengths and limitations common to qualitative studies. We used maximum variation sampling to cover as broad a range of heart failure experience as possible; therefore, it should be noted that it is not designed to be numerically representative of all those with the condition in the population of the UK. Though 35 of our 37 patient interviews were conducted in English, this was the second language of two participants, and two others were interviewed in Punjabi. All other participants could read, write and speak English.
While patients are clearly experts in their own condition without more directed information aimed at an individual's need, the detail will be very difficult for some patients at Level 1 (and some at Level 2) to deal with. We identified three levels of awareness about medication, of which only those in the last group can be considered to know enough to engage in informed decision-making with health professionals. Although everyone we interviewed acknowledged the importance of maintaining their medication regimens, only patients at Level 3 described value in learning more about heart failure and its treatment.
Patients at Level 1, in addition to having difficulty pronouncing the names of their drugs, which could disadvantage them in medical consultations, generally could not recall being told very much about heart failure and said they were not interested in treatment details. Patients at Level 2 were more confident about managing medication and the meaning of heart failure, but did not wish to ask more questions or find out more about the condition. These data support Horowitz's findings that those with inadequate understanding are not in a position to understand the implications of having a chronic disease with acute episodes.16
Although there are some apparent differences in the age range and educational and professional backgrounds of the different levels, it is important to note that all levels included people with different characteristics. This study underlines the importance of avoiding stereotypes about the cultural or socioeconomic backgrounds of patients who want to learn about their condition (for instance patients in Level 3 included a retired engineering worker, a retired nursing auxiliary as well as business people).
Insufficient knowledge is not the only barrier to engagement in discussions about treatment. Some patients who had experienced several years of deterioration indicated that they saw little point in taking an interest in their treatment when nothing more could be done. As patients with heart failure deteriorate they realize that few treatment options remain and may prefer health professionals to shoulder more responsibility for decision-making. Several said they did not wish to receive more information.
The three levels of understanding identified in this study appear to correspond to the coping mechanisms Buetow and colleagues found in heart failure patients in New Zealand.13 Buetow concluded that most patients coped either by avoidance, corresponding to our Level 1, or disavowal, corresponding to our Level 2; only a minority showed acceptance in the sense of seeking a detailed understanding of their condition and its treatment (Level 3).
We do not know whether individual levels of understanding can be changed by professional interventions, nor can we be sure that the model of behaviour that health professionals are taught to encourageactive participation by the patient in clinical decision-makingis helpful to all patients. Our study shows that people who adhered to their medication regimens do not necessarily participate in concordance, in the sense of understanding of what their treatment is for.
Nonetheless, it is desirable that every patient with heart failure should have the opportunity to discuss his/her condition in detail with a professional who can frame explanations about heart failure in a language appropriate to individual need. Detailed explanations of heart failure may be unwelcome at certain points, but all patients need to recognize when to seek help if they are getting worse.
Medication reviews, for which there are targets in the GP contract, may present opportunities to monitor and encourage patients' familiarity with medication and understanding of heart failure. Similarly, better labelling of drugs, written instructions on their purpose and use, and when appropriate the use of daily dispensing systems are simple methods of increasing understanding as well as adherence, and should not be overlooked. The key professional for many heart failure patients is likely to be the specialist nurse, and future studies may show that increasing numbers of patients can be helped to understand their condition and take an active role in its management.
| Contributors |
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KF interviewed all but two of the patients in this study, and analysed the data in collaboration with SZ. This study is part of the wider DIPEx project. KF drafted the paper; all authors contributed to the subsequent drafts and final version. KF and SZ will act as guarantors for the work.
| Acknowledgments |
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We are grateful to all the participants, to the doctors and nurses in the DIPEx network who helped us recruit and to the British Heart Foundation who funded the study. Thanks to Suman Prinjha for conducting and translating the Punjabi interviews, and to our other colleagues in the DIPEx research group in Oxford.
Funding: the study on which this paper draws was funded by the British Heart Foundation. The authors' work was independent of the funders.
Ethics approval: this study was approved by a multiple research ethics committee.
Competing interests: Ann McPherson is a co-founder of DIPEx (www.dipex.org); Kate Field and Sue Ziebland are members of the DIPEx Research Group. This does not however represent a conflict of interest for this paper.
| Notes |
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Field K, Ziebland S, McPherson A and Lehman R. Can I come off the tablets now? A qualitative analysis of heart failure patients' understanding of their medication. Family Practice 2006; 23: 624630.
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