Patients strategies for managing medication for chronic heart failure

International Journal of Cardiology 109 (2006) 66 – 73 www.elsevier.com/locate/ijcard

Patients strategies for managing medication for chronic heart failureB M. Reid a,*, A. Clark b, D.L. Murdoch c, C. Morrison d, S. Capewell e, J. McMurray f a

Division of Community Based Sciences, Public Health and Health Policy, University of Glasgow, 1 Lilybank Gardens, Glasgow G12 8RZ, UK b Public Health and Health Policy, University of Glasgow, 1 Lilybank Gardens, Glasgow G12 8RZ, UK c Southern General Hospital, Govan Road, Glasgow G51, UK d Greater Glasgow NHS Board, Dalian House, 350 St Vincent Street, GLASGOW G3 8YZ, UK e Department of Public Health, University of Liverpool Whelan Building Quadrangle, Liverpool, L69 3GB, UK f Clinical Research Initiative in Heart Failure and Department of Medicine, West Medical Building, University of Glasgow, Glasgow G12 8QQ, Scotland, UK Received 14 February 2005; received in revised form 24 May 2005; accepted 28 May 2005 Available online 1 July 2005

Abstract Objectives: To explore patients views of the management of medication of chronic heart failure (CHF); to explore in what circumstances they have difficulties in managing medication. Design: Qualitative analysis of in-depth interviews using a constant comparative approach. Participants: Patients attending an outpatients clinic with a primary diagnosis of CHF due to left ventricular systolic dysfunction, NYHA Class II or III symptoms, and a history of hospital admission for heart failure. Results: 50 patients were recruited, average age 67.1 years with ranges between 41 and 80 years. 26 were classified as NYHA Class II and 24 Class III. Patients reported developing routines and back up strategies to help with the complex task of medication-taking. They also described circumstances in which they were more likely not to take medication. Conclusions: This study demonstrates, with a large sample of respondents, the complexities of medication-taking and the difficulties of maintaining constant medication over a long period of time. The study provides examples of patients’ strategies for so doing. Health care professionals should recognise that concordance may vary but explore ways in which they can help patients establish routines. D 2005 Elsevier Ireland Ltd. All rights reserved. Keywords: Heart failure; Concordance; Medication management; Patients views

1. Introduction Patients with chronic illness are now maintained at home for many years. Support is provided by primary care staff while many patients will also have regular contact with specialist care. The majority of care is, however, provided by the patient themselves, along with their carer(s) [1,2]. Patients with chronic conditions often have to learn to manage their condition through self-medication as well as attending to their diet, exercise and other aspects of their life

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The study was funded by the Chief Scientist Office, Scottish Executive, grant no K/OPR/2/2/D363. * Corresponding author. Tel.: +44 141 330 4040; fax: +44 141 330 5018. E-mail address: [email protected] (M. Reid). 0167-5273/$ - see front matter D 2005 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.ijcard.2005.05.051

[3]. Poor management may result in the patient being admitted to hospital or more frequent visits to the practice [1,4]. Successful management therefore has considerable benefits to the patient, to the health professionals, and ultimately to the health service through reduced costs [5,6]. The management of chronic heart failure (CHF) is challenging, it being a condition with disabling symptoms, diminished quality of life, frequently leading to lengthy, expensive hospitalisation and often death [6 –8]. A number of treatments can reduce these consequences of CHF including diuretics, angiotensin converting enzyme (ACE) inhibitors, beta-blockers and digoxin [9]. As patients are characteristically elderly, they may have other degenerative diseases which also require regular medication [9]. Consequently patients with CHF may typically take a large number of medications daily. Difficulties with patients’

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medication-taking have been reported as an important reason for hospital admissions [10,11]. There have been substantial developments made in terms of home-based interventions (for example, with nursing help) which have facilitated self care by patients with HF [12,13]. Research on patient management aspect of HF has primarily assessed medication-taking in terms of a compliance Frate_ or score [11,14 –16] which has ranged from 25% to 73% dependent upon the method of assessment (eg pill counts, prescription reviews) [15,17,18]. Poor compliance, that is, interrupted medication-taking, has been discussed in terms of Fnon_, Fmal_ or Fpoor_ compliance. Researchers continue to focus on ways of quantifying compliance through the development of new scales [19]. Recent health policy, however, has recognised that patients, particularly those with chronic disease, often become proficient in managing their condition [20]. The renaming of Fcompliance_ to Fconcordance_ [21,22] was designed to bring about a more patient-centred approach, confirmed through the term FExpert Patient_ [20,23]. The more collaborative approach understood by Fconcordance_ acknowledges the empowerment of the patient and the need for health professionals to approach patient medication with this understanding [24]. A central aspect of concordance is that patients themselves take responsibility for their medicationtaking, and that the professionals, too, recognise this [25]. Few studies have taken a Fconcordance_ approach, which demonstrates the difficulties involved in managing long term medication-taking with this condition. Such an approach is vital if health professionals are to understand the complexities of self-medication and provide the necessary supports to patients. This is the approach adopted by the study reported below. The overall study aim was to describe the patient and carer experience of heart failure, with a particular focus upon medication management. In order to find out the meaning the patients themselves attached to the way in which they organised their medication-taking, we took a constructivist approach [26], one of a number of perspectives adopted by qualitative researchers. This approach seeks the patients’ perspective and the patients own words to describe their actions [26], thereby challenging those who wish only to quantify compliance. In-depth interviews with patients were used to explore their management of CHF medication.

2. Methods The inclusion criteria for this study were a primary diagnosis of CHF due to left ventricular systolic dysfunction, NYHA Class II or III symptoms, and a history of hospital admission for heart failure. Patients over 80 and/or with a diagnosis of dementia were excluded for several reasons; the researchers were concerned about possible severe cognitive decline in this age group, about co-

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morbidity confusing the focus of the interview about CHF, and also were anxious that some patients would find a long and intensive interview too demanding. Patients included in the study did not have formal cognitive function testing but we excluded patients with a known clinical diagnosis of cognitive dysfunction. Consecutive patients meeting the entry requirements were approached by DM at two outpatient cardiology clinics in a Glasgow hospital, offered a leaflet describing the study and asked if they would be willing to participate (at the time of the study the home-based heart failure service was not available to all patients). At the time this study was carried out, in the United Kingdom patients with diagnosed HF were mainly treated by doctors (nurses are more often involved now). Patients usually would have received ‘‘shared care’’, i.e. would have all attended both their general practitioner (GP) or family physician but most would have also attended (at least once) a hospital physician (either a cardiologist, internist or care of the elderly physician). Regular care would have been mainly delivered by the GP. Patients would often also have attended a hospital outpatients clinic on a three- or six-monthly basis if stable (or more frequently if otherwise indicated or requested by the GP). In-patient care i.e. hospital admission would have been required only during episodes of worsening that could not be controlled as an outpatient. Thus patients in this study had all attended for specialist cardiology care at least once. If willing to participate, patients names were sent to the researcher (AC) who gained consent and arranged an interview. The majority (47 / 50) were carried out in the individual’s homes with three at Glasgow University. The piloted semi-structured interview schedule explored patients’ knowledge of CHF, medication management and relations with health professionals, see Table 1. Patients were asked to nominate a carer (we defined carer as the individual nominated by the patient who carried out regular care for them; the carer did not necessarily need to live in, although most did) and a separate interview was carried out with the carer. The study was approved by the local research ethics committee and patients gave their written consent to be interviewed. 2.1. Analysis Interviews were tape-recorded, transcribed, and entered into the computer analysis package NUD:ist. Preliminary analysis of the interview transcripts was carried out using constant comparative method to identify emerging concepts. AC and MER analysed the first ten interviews, and developed categories; the next ten were then analysed and the process continued until saturation [27] of categories was achieved. The remaining interviews were analysed and a sample co-analysed with a high level of agreement. AC identified 6 emerging themes into which the categories were

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Table 1 The abbreviated interview schedule

Patient & Carers

Area of interest

Interview topics

Example interview questions

Knowledge of CHF

Understanding of CHF, cause, likely trajectory

Can you tell me what is wrong with the heart? What caused the heart condition/failure?a How is well is the heart likely to be in future? How do the symptoms from the heart affect you day-to-day? How difficult has dealing with the symptoms been? What have you done to make things easier? What will be the long term affects of the heart condition?

Impact of CHF Stress Expectations

Quality of life, daily changes Coping and adaptation

Home-based management Unpaid carers

Prognosis

Help-seeking Health professionals/services

Approach to: medication, physical activity, fluids, salt, weight, smoking, obesity, factors supporting and inhibiting management Relationship, burden activities, variation Help-seeking processes, time-spans, health professionals Accessibility, approachability, needs

a

What do you do to manage the heart condition day-to-day? Is there anything that you avoid doing? What do you think about the medications? How do you organize managing the tablets? What do you each do? What makes management easier/more difficult? How do you/carer help with managing the heart condition? How does this change day-to-day and how? How much does this affect the rest of life? When should you seek medical help for the heart condition? What do you look for? How long should you wait? Which health professional do you try to contact and how? Which health professionals have provided most help and how? What could have been changed to make management better? How helpful is your cardiologist/family doctor? What do they do? What could they do different to support you better?

NB: As patients had different beliefs about what CHF was, the interviewer phrased questions using the terms used by the patients to describe the CHF.

grouped, these being knowledge, medication management, professional relationships/interactions, symptoms, carers, and general management of the condition. AC and MER checked back and compared the emergent analysis with the transcripts. Additional data were collected from the respondents on the type of medication related to heart failure and number of daily doses taken and these data were used to create Table 2.

age ranges between 41 and 80 years (Table 3). Twenty six patients were classified as NYHA Class II and 24 Class III, with about equal proportions of male and female in each category. Additionally, twenty nine carers were interviewed, access to carers was refused in 12 instances and a further 9 reported that they had no carer. Carer issues are discussed elsewhere [28]. 3.2. Knowledge of their condition

3. Results In this paper we discuss the complexities of medicationtaking that patients faced daily, and their attempts take medication regularly. 3.1. Sample Fifty of the seventy five patients with heart failure approached were recruited. The majority of patients were derived from one outpatient clinic (46 / 50) with 4 / 50 from another clinic in the same city. Thirty three were male and 17 female; 5 refused to take part, and 20 (15 male and 5 female) did not reply to the initial or follow-up letter. The study thus achieved a response rate of 66%. The average age of the sample was 67.1 years (66.8 male, 67.6 female), with

Table 2 Characteristics of study patients

NYHA II NYHA III

Total

Males

Females

Age (mean)

26 24

16 17

10 7

67.2 (SD 7.9) 66.8 (SD 12.4)

All of the samples were asked what they understood about their condition. Very few spontaneously used the term Fheart failure_, and some misunderstood the term. For them heart failure meant a finite event ‘‘ heart failure is when you die, your heart is [has] failed you’’. For others there was a slow realisation of the diagnosis and its implications; ‘‘I thought heart failure was heart failure, it’s like any other illness. Maybe it’s just me that’s not been particularly bright, there are varying degrees of it and unfortunately I am at the bottom end of it’’. Although patients were quite positive about their relationship with health professionals, the most frequently reported account was that they had not been

Table 3 Daily CHF related medication by type for 50 respondents Name of drug

Number taking the drug

(%)

Loop diuretic ACE 1 inhibitor Beta blocker Oral/long acting nitrate Warfarin Calcium channel blocker Thiazide diuretic

38 38 17 16 14 6 6

76 76 34 32 28 12 12

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given a direct diagnosis, or they had seen many health professionals before being given the diagnosis. The following comments represent the majority views; Mrs A ‘‘No, the heart failure was only mentioned through Dr X (the specialist), it wasn’t mentioned at any time when I was under Dr Y (the GP)’’. (Interviewer to Mr F) ‘‘Did the hospital say what had happened to your heart?’’. Mr F ‘‘ No, the description we got wasn’t very direct, but the description I noticed recently there has been ischaemic heart failure’’. Mr B ‘‘. . .So although nobody came out and said FYou’ve got heart failure or your heart is failing_ they didn’t need to because I already knew’’. Regardless of the lack of specificity of communication around the diagnosis, the majority of the sample understood that the condition involved the heart and its functions, and talked about the muscle being Fslack_ Fleaking_, about failure to beat properly or arterial problems. All patients had experienced some of the symptoms of heart failure. Although they mentioned breathlessness, lethargy and heart problems, the most frequently reported symptom, and the one that directly linked to medication-taking was fluid retention in the lower and upper limbs. While many would agree with Mr Mc A when he responded to the interviewer’s question about what caused his leaky heart ‘‘I haven’t got a clue’’, a minority had a more sophisticated understanding of the biological cause of such symptoms, and the link with fluid retention with their circulation. These tended to be Class III patients. Thus medication-taking was usually not based upon a full understanding of the condition, of the causes and of the role of the medication in reducing the symptoms. Many patients explicitly mentioned one medication, furosemide (the water pill), since its effects were understood and felt by them directly and if they forgot to take the pill, it had a demonstrable effect on them. Mr G was typical when he said Mr G: ‘‘Well furosemide, I know that’s a water pill. Anybody that takes furosemide could tell you what that is’’. Other pills were scarcely ever mentioned by name (eg ACE inhibitors) and even if so, they were mentioned as the one they had to take twice a day, or by providing a brief description of the function of the medication. AC: ‘‘. . .do you know any of the names of the ones (drugs) that you take?’’ Mrs D: ‘‘I couldn’t run them off. If I go anywhere and they say FWhat tablets are you on?_ I just produce the list. I don’t even know, there is one to regulate the heart-beat and there is the water tablets of course. But don’t ask me, I don’t ask and I don’t even think I even want to know’’. Medication was usually visualised as Fpills_ or Ftablets_ they had to take. Patients understanding ranged from a vague sense that the pills were doing good to a feeling that they did not know if they were doing any good but took

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them because they trusted their health professional(s) who had prescribed them. 3.3. Complexity of medication taken Table 2 reports the type of heart failure medication that patients were taking at the time of interview. Some 75% were taking ACE inhibitors and/or loop diuretics. A third were taking beta blockers, nitrates or warfarin. The drugs were reported by the patients to have a range of functions and required to be taken with varying degrees of regularity. Patients said they took diuretics after meals, while ACE inhibitors were taken once daily as was warfarin. All patients were on more than one medication and virtually all reported that the prescriptions for their drugs ran out at different times. Mr H was looked after by his wife who had been a nurse and who had largely taken over the medication management. AC: ‘‘But its yourself (to Mrs H) who mainly organises that?’’ Mr H: ‘‘I am fortunate in that way’’. Mrs H (who was a nurse): ‘‘It’s just like being in the ward, it’s time and so, so, so, so, so, (as if counting) and then at night time, for tomorrow morning, I will lay out all the morning. But at night, I will leave out all the tablets that he has to get first thing. Two water tablets and then his thyroxine and what is the other one, your digoxin, that is all left out for the morning. Two o’clock comes, Fright your furosemide_, six o_clock FRIGHT, your warfarin_. But it’s just like automation. Like [being on] the wards, you just KNOW the times and you give it like that’’. Mr R: ‘‘Its not so much a large amount, but it’s so many different kinds [of medication]. It’s not as if it’s four aspirins and four water tablets. But it’s two of this, and two of that, Fyou don_t take this one during the day_ and Ftake that one at night_. . ..’’ AC: ‘‘Coming back to the tablets again, what would you do if you had run out of a prescription?’’ Mrs C: ‘‘Well fortunately I haven’t done that yet. I usually, every week, every Sunday, I check the sort of week’s supply to see what we do need’’. Thus the patients and their carers described two related tasks, remembering to take each drug on a daily basis at the appropriate time(s), and over the longer term, maintaining a supply of drugs. Patients reported concern over remembering whether all medication had been taken, the complex logistics (managing different numbers and types of medication at different times of day) and running out of medications. They also recognised that the dosage of the

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pills could be changed and this led them to understand that there was Fflexibility_ in pill-taking. 3.4. Strategies To deal with the complexity of the task many patients reported that they developed two main types of strategy. The first they described was the creation of some kind of routine to their medication management. The second type of strategy described was the development of a series of back up devices, aide memoires, including verbal and visual cues and other practical supports. 3.4.1. Creation of routine The majority reported struggling with the (increasing) range of pills before finding a system to suit them. They described using different products to lay out the daily doses including commercially produced, home-made pill boxes or using the original containers. Patients felt that they were often left to devise their own system and reported that it was usually a carer or family member rather than a health professional who suggested using a box system as it was portable. AC: ‘‘How did you organise it before?’’ Mr R: ‘‘Well at times I was just trying to keep it in my head but I was starting to get mixed up. Because I started off with the furosemide, well I had the tagamet I have always been on tagamet of some sort. I went on the furosemide and the enalapril, so it was quite easy to remember them. But when they started to increase them it was getting a wee bit much to keep tabs on. I said FI’d better do what I have heard the other ones do, sorting their things out the night before_. The amount that I take you have GOT to something like that because I would find it impossible to keep it in mind’’. Mrs K: ‘‘Well Chris (son) usually puts them out for me on a saucer, he told somebody and it’s true enough. But I said FChris I’ll need to put these tablets out myself_ so when I take the one at two o_clock I leave out my morphine (and it’s on a wee white shelf in my kitchen so you can see easily), four and a half I take. Four on a Sunday, just’’. The ideal which some achieved was that the medicationtaking became part of their everyday life, and part of the routine along with getting dressed and eating meals. Mr Andrews saw his medication-taking as habitual. It had been integrated into his life through normal routines. AC: ‘‘Have there been any times when you have not taken the right ones or forgotten, apart from the furosemide which is intentional?’’ Mr A: ‘‘No because it’s just a routine, I am easily institutionalised’’.

3.4.2. Maintaining the routine All respondents described how they set up their system. Many then gave accounts of how they introduced a second type of Fchecking_ strategy, the purpose of which was to confirm that medication had been taken at the appropriate time. The reported reminders included visual cues and frequent verbal checks by their carer as to whether their partner had taken medication. Mr J: ‘‘If they [the tablets] are lying on the shelf and I get up out of my bed. . .as soon as I open my eyes they are visible to me. They are not tucked away in a corner, I see them right away. So the first thing when I open my eyes and I look up, I don’t see a window or a door, I see these tablets’’. Twenty nine respondents had a carer (either living with them, as a neighbour or relative). One third of patients said that carers offered constant reminders throughout the day about the medication; sometimes there were established routines between the couple. Another third reported that they managed independently of their carer, while a final group relied completely on their carer. Mr B: ‘‘We watch the television and we are going to bed, she will say FDid you take your tablets?_ and I will say FOh jings [goodness], no. Thanks, I forgot._. . .[Sometimes] She has gone to bed and she hasn’t reminded me, and I have gone to bed and had to get up again to get the tablet and I never even let on to [told] her, but [just thought] FI forgot one of those tablets_.’’ Mr McG: ‘‘Sub-consciously, she [wife] will just check. What she is good at [is] reminding me, if we are going away for the day she will say FHave you brought your tablets with you?_’’ 3.5. Low concordance When asked about this (question: FMany patients have reported that they have not always remembered to take their medication, can you think of an example when this happened?_) participants were cautious about reporting occasions when this happened. Their estimates of the frequency of low concordance varied from never to more than once a week. Mr B: ‘‘I don_t think I have ever missed them. The only one time is when I didn’t feel right that day about that one. Sometimes I have forgotten my warfarin at night-time’’. Mr J ‘‘Well last week I think I forgot to take one of the digoxin tablets, I definitely think I forgot to take them. I was sitting there having a cup of tea. . .and I put the cup down and I was washing it and came back, the tablets were there. I can’t remember taking the other one and I never counted them.’’ There were two forms of Flow concordance_ reported by the sample. The first related to furosemide where the

M. Reid et al. / International Journal of Cardiology 109 (2006) 66 – 73

respondent said that they had deliberately not taken the drug when they should. Mr B: ‘‘One of the reasons [he did not take the tablet] is that furosemide is a water pill, you will probably know. If I am going anywhere, I can’t take that water pill. But if I know where I am going, I can take it because when I take that tablet, say, at nine o’clock in the morning, [for] the next three to four hours, I can be at the toilet a dozen times. If I don’t know where I am going, there is no way I am going [ie I am not going] to take this tablet’’. Reasons presented for this action included imminent attendance of social events, visits to places where toilet facilities were unknown, or long journeys. Adjustments included reducing doses, not taking the diuretic altogether or taking it at an earlier or later time. The majority of participants reported changing their doses after having consulted health professionals about this. There were few reports of patients choosing not to take their other medication. Patients spoke of a second form of low concordance, which was more likely to occur when their routines of management were broken and they forgot to take them. The circumstances they described were clustered around participants being in unusual places, being distracted or absorbed in activities, for example, a day trip away, a wedding, and so on. On these occasions they reported that the established Froutine_ was broken and back up strategies were less likely to be used. AC: ‘‘Would there be a similar type of situation where that would happen?’’ (ie not taking medication) Mr R: ‘‘Well you might have an outing and didn’t have it (the pill) with you or something like that. What I usually do is put them in two lots in a wee tub and I just sit them up in the fire place or something like that. I know I have got to take them.’’ Mr S: ‘‘The only thing, if I am going out or something like that, I take them with me. Sometimes I forget them that way but I am very regular at taking them.’’ AC: ‘‘Would you tend to miss ones that are at certain times than ones you take at other times?’’ Mr S: ‘‘Oh no, no, no.’’ Mrs S: ‘‘Well I have got to shout him going out the door — FPILLS, pills._ Yesterday we were going visiting, we were going to my cousins for lunch and in our road back, he said he was going to his club. He goes to (Club) in a Thursday and I said FWell I will drop you off just now because I am not coming out again._ I had been out all day and I said FGet a taxi back._ He said FI have not took my pills._ I said FWhat pills?_ He said FI never took my water pills, I forgot to bring them with me_.’’

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3.6. Teaching and learning The process of learning management strategies is an essential part of becoming a patient with chronic disease. Learning how to manage the medication is a specific task and one which some patients and carers recognised was Flearnable_ and hence Fteachable_. One carer used exactly that term when describing how her husband found out how to take his drugs; Mrs S: ‘‘I am trying to teach him [Mr S] to fill the box. We get the (pill) box and we fill that once a week. I get the pills out and I show him. We start with the morning ones. I said to him FForget about names. There are the boxes, and the boxes tell you, those are your morning ones._ So we fill the top boxes for the morning. Then I say FRight, at lunchtime is your three water tablets [ie at lunchtime you take your three water tablets]. That is another box there._ So I am trying to teach him like that. He is doing not bad. He is coming on. He has got to learn because there could come a time [when I am not there]. I could die at our age. I could be in hospital or anything’’.

4. Discussion Within the field of CHF there has been an assumption that compliance can be assessed as a Fscore_ or a Frate_ which the patient achieves [17,19]. This study, in keeping with commentaries on medication management in chronic illness [3,29,30], suggests that the pursuit of compliance rates alone is unhelpful and fails to acknowledge the way in which medication-taking is constructed in daily life. The theoretical approach taken has allowed patients to use their own words to describe their approach to the complexities of the medication-taking and is an approach which has been used by others in the field to illuminate other aspects of living with heart disease. Such an approach opened up an alternative understanding of the condition to the biomedical [30 –33]. Our data demonstrate that successful concordance results from the establishment and maintenance of routines and fall-back strategies. Rather than low concordance equating with a lack of commitment to medication-taking, it primarily results from these routines breaking down, often from events in their lives which distract them from their regimen. The findings therefore suggest that concordance is not fixed over time as one rate but depends upon the daily circumstances of the patient, their medication and the broader context of their lives. In our study, patients adjusted their medication to fit into the broader demands of their lives [34] even as noted elsewhere [35] if this resulted in going against the wishes of their health professionals. The concept of Feducation_ in the literature on chronic disease [36,37] is an important one with acknowledgement that the patient may have to learn (or re-learn) actions and behaviours [38 – 40]. Within this study patients came to

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realise that with the increasing complexity of medication management patients would have to learn how to manage their medication by establishing successful strategies. Learning these strategies provides the patient with a stronger basis to work with professionals in concordance. Lack of knowledge of the condition was a typical finding in our and other studies of patients with HF condition [41] and does not facilitate patient understanding of the link between the medication and the symptoms of the condition. Successful maintenance of the heart failure patient out of hospital is a result of the combined efforts of patient and professional [12,31]. Taking this patient-centred approach provides practical lessons regarding medication management. First, it allows health professionals to appreciate the volume of medication, and the inherently difficult nature of the task. Compliance implies a shared understanding of the problems relating to medication which face the patient. In this study, along with surprisingly few others, we asked the patients directly about the difficulties of managing multiple medication. The findings provide professionals with a greater understanding of patient’s difficulties overall, as well as indicating specific problem areas (such as drugs running out, dealing with social events, especially when away from home, and so on). It would be helpful for both professional and patient to understand that medicationtaking is a Fskill_ or a task which can be taught. Secondly, the study offers an understanding of ways in which patients create routines to manage the task and points to ways in which patient and professional may discuss the establishment of such strategies which would shorten the Ftrial and error_ or the learning period. Thirdly, respondents noted types of occasions when they were more likely to forget their medication (or deliberately not take it). By identifying these types of situations health professionals may be able to help other patients with CHF. Other areas of difficulty, such as medicines running out at different times, may also be avoided by co-ordinated efforts between patient and professionals. 4.1. Lessons from the study Patients should be taught the ‘‘skills’’ of medicationtaking, for example, the importance of routines, and the Fdangers_ of situations which break routines such as family outings and social occasions. GPs and other health care workers (e.g. nurses and pharmacists) should be reminded of the importance of uninterrupted supplies of medication and the risk that patients will forget to renew their prescriptions; local arrangements should be made to ensure that this situation does not arise. Time spent explaining the purpose of the different forms of medication will allow patients to understand the importance of each prescription, rather than assuming that all medication is taken on trust. Boxes with compartments (for times/days of the week) are widely available in most countries, often freely through the health service or insurance schemes and patients should be

informed about them and encouraged to use them, or to develop their own workable system. 4.2. Limitations of the study This (as any other) study has its limitations. In the UK at the time of the study all patients with a diagnosis of HF would almost always have seen a cardiologist hospital specialist and thus the study — in terms of the sample — is reasonably true of a UK sample. This is not necessarily the case elsewhere. It is also the case that certain exclusion criteria were introduced and in that sense the sample is not representative of the breadth of HF patients in the UK and in particular does not represent the elderly population with HF. There is an issue with the volunteer basis of the sample. In the project, 75 patients were approached and 50 recruited into the study. Thus the study achieved a 66% response rate, which could be biased towards those more likely to be adherent if only in that they were also more willing to be interviewed. This group would be likely to be interested in their care and medication (although note that the patient information sheet flagged up indicated that the study was concerned with patients_ understanding patients management of heart failure and its treatment and did not focus upon medication management).

Acknowledgements The research team would like to thank all the patients who took part in the study, and gave their time so willingly. The interpretation of the data rests with the research team alone. Contributors: MER led the design of the study, contributed to the data analysis and took the lead in paper writing; AC carried out the field work and led the data analysis. DM made initial contact with the patients and discussed the data; CM, JM, SC contributed to the design, JM, CM discussed the data and all contributed to writing the manuscript. The study was funded by the Chief Scientist Office, Scottish Executive, grant no K/OPR/2/2/D363. The views expressed in the paper are of the authors alone. Competing interests; none.

References [1] Department of Health. Improving chronic disease management, London. London’ Department of Health; 2004. [2] Equal Opportunities Commission. Review of recent EOC research on parents and carers. London’ EOC; 2004. [3] Donovan J. Patient decision making. Int J Technol Assess Health Care 1995;11(3):443 – 55. [4] Stewart S, Pearson S. Uncovering a multitude of sins: medication management in the home post acute hospitalisation among the chronically ill. Aust N Z J Med 1999;29:220 – 7.

M. Reid et al. / International Journal of Cardiology 109 (2006) 66 – 73 [5] National Institute for Clinical Effectiveness. Chronic Heart Failure NICE Guideline, vol. 5. 2003. [6] Stewart S, Macintyre K, MacLeod MM, Bailey AE, Capewell S, McMurray JJ. Trends in hospitalisation for heart failure in Scotland, 1990 – 1996. An epidemic that has reached its peak? Eur Heart J 2001; 22:209 – 17. [7] McMurray JJ, Stewart S. Epidemiology, aetiology, and prognosis of heart failure. Heart 2000;83:596 – 602. [8] Stewart S, Macintyre K, Capewell S, McMurray JJ. Heart failure and the ageing population; an increasing burden in the 21st century? Heart 2003;89:49 – 53. [9] SIGN diagnosis and treatment of heart failure due to left ventricular systolic dysfunction. SIGN Publication, vol. 35. 1999 (February). [10] Vinson JM, Rich MW, Sperry JC, Shah AS, McNamara T. Early readmission of elderly patients with congestive heart failure. J Am Geriatr Soc 1990;38:1290 – 5. [11] Chin MH, Goldman L. Factors contributing to hospitalisation of patients with congestive heart failure. Am J Publ Health 1997;87: 643 – 8. [12] Jaarsma T, Abu-Saad HH, Dracup K, Halfens R. Self-care behaviour of patients with heart failure. Scand J Caring Sci 2000; 14:112 – 9. [13] Blue L, Lang E, McMurray JJV, Davie AP, McDonagh TA, Murdoch DR, et al. Randomised controlled trial of specialist nurse intervention in heart failure. BMJ 2001;323:715 – 8. [14] Opasich C, Febo O, Riccardi PG, Traversi E, Forni G, et al. Concomitant factors in decompensation in chronic heart failure. Am J Cardiol 1996;78:354 – 7. [15] Ghali K, Kadakia S, Cooper R, Ferlinz J. Precipitating factors leading to decompensation of heart failure. Arch Int Med 1988;148:2013 – 6. [16] Grady K, Dracup K, Kennedy G, Moser D, Piano M, Stevenson LW, et al. Team management of patients with heart failure. Circulation 2000;102:2443 – 56. [17] Cline CM, Bjorck-Linne AK, Israelsson BY, Willenheimer RB, Erhardt LR. Non-compliance and knowledge of prescribed medication in elderly patients with heart failure. Eur J Heart Fail 1999;1: 145 – 9. [18] Macfadyen RJ, Fraer CG, Struthers AD. Intermittent non-adherence with ACE-inhibitor treatment and its implications for clinical trials. Heart 2001;85(2):213 – 4. [19] Bennett S, Perkins SM, Lane KA, Forthofer MA, Brater DC, Murray MD. Reliability and validity of the compliance belief scales among patients with heart failure. Heart Lung 2001;30(3):177 – 85. [20] Department of Health. The expert patient: a new approach to chronic disease management for the 21st century. London’ Department of Health; 2001. [21] Jones R. The expert patient. Br J Gen Pract 2002;52:479 – 522. [22] Mullen PD. Compliance becomes concordance: making a change in terminology produce a change in behaviour. BMJ 1997;314: 691 – 2.

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[23] Marinker M. From compliance to concordance: achieving shared goals in medicine taking. London’ Royal Pharmaceutical Society of Great Britain; 1997. [24] Department of Health. Chronic disease management and self-care. National Service Frameworks. Department of Health. London, 2002. [25] Stromberg A. Educating nurses and patients to manage heart failure. Euro J Cardio Nurs 2002;1(1):33 – 40. [26] Denzin NK, Lincoln YS, editors. Handbook of qualitative research. London’ Sage; 1994. [27] Miles MB, Huberman AM. Qualitative data analysis. London’ Sage; 1994. [28] Clark, A., Reid, M., Murdoch, D., Morrison, C., Capewell, S., McMurray, J. Uncovering the complexities and sophistication of informal care: a qualitative study of carers of people with heart failure. Unpublished paper, University of Glasgow. [29] Playle JF, Keeley P. Non-compliance and professional power. J Adv Nurs 1998;27:304 – 11. [30] Stromberg A, Bronstrom A, Dahlstrom U, Fridlund B. Factors influencing patient compliance with therapeutic regimens in chronic heart failure: a critical incident technique analysis. Heart Lung 1999; 334 – 41. [31] Mahoney J. An ethnographic approach to understanding the illness experience of patients with congestive heart failure and their family members. Heart Lung 2001;30(6):429 – 36. [32] Zambroski CH. Qualitative analysis of living with heart failure. Heart Lung 2003;32(1):32 – 40. [33] Ekman I, Ehnfors M, Norberg A. The meaning of living with severe chronic heart failure as narrated by elderly people. Scand J Caring Sci 2000;14:130 – 6. [34] A. Clark, J. McMurray, C.M. Morrison, D.L. Murdoch, S. Capewell, M. Reid, A qualitative study of the contribution of pharmacists to heart failure management in Scotland. Unpublished paper. University of Glasgow. [35] Martensson J, Karlsson JE, Fridlund B. Female patients with congestive heart failure; how they conceive their life situation. J Adv Nurs 1998;28(6):1216 – 24. [36] Thorne SE. Constructive non-compliance in chronic illness. Holist Nurs Pract 1990;5(1):62 – 9. [37] Clark N, Gong M. Management of chronic disease by practitioners and patients; are we teaching the wrong thing? BMJ 2000;320:572 – 5. [38] Jaarsma T, Abu-Saad HH, Halfens R, Dracup K. FMaintaining the balance_ — nursing care of patients with chronic heart failure. Int J Nurs Stud 1997;34(3):213 – 21. [39] Pound P, Gompertz P, Ebrahim S. Social and practical strategies described by people living at home with stroke. Health Soc Care in the Community 1999;7(2):120 – 8. [40] McWilliam CL, Stewart M, Brown JB, Desai K, Coderre P. Creating health with chronic disease. Adv Nurs Sci 1996;18:1 – 15. [41] Horowitz R, Reid SB, Leventhal H. A story of maladies, misconceptions and mishaps; effective management of heart failure. Soc Sci Med 2004;58(3):631 – 43.