Eur J Clin Pharmacol (2014) 70:1423–1431 DOI 10.1007/s00228-014-1761-3

REVIEW ARTICLE

Knowledge, attitudes and beliefs of patients and carers regarding medication adherence: a review of qualitative literature Maria Kelly & Suzanne McCarthy & Laura Jane Sahm

Received: 1 August 2014 / Accepted: 21 September 2014 / Published online: 4 October 2014 # Springer-Verlag Berlin Heidelberg 2014

Abstract Purpose The aim of this review is to cohere evidence on the knowledge, attitudes and beliefs of patients and carers regarding medication adherence. Medication adherence refers to “the extent to which the patient’s action matches the agreed recommendations”. Medication adherence is vital in preventing, managing and curing illnesses and, hence, is linked with positive health outcomes. Methods A search was conducted using the following databases: CINAHL, Embase, PubMed and Web of Knowledge from inception to November 2013. Titles and abstracts were screened for inclusion in the review according to pre-defined inclusion and exclusion criteria. Studies were assessed for quality, and data were extracted into a data extraction form. Results were analysed thematically. Results The final results included 34 articles. Eight analytical themes were identified: (i) beliefs and experiences of medicines, (ii) family support and culture, (iii) role of and relationship with health-care practitioners, (iv) factors related to the disease, (v) self-regulation, (vi) communication, (vii) cost and (viii) access. The theme, “beliefs and experiences of medicines”, was present in 33 studies, with many discussing the influence that side effects have on medication adherence. Conclusions There are a number of variables that impact upon the knowledge, attitudes and beliefs of patients and carers regarding medication adherence. This review presents an overview of the analytical themes which offers the opportunity to examine interventions and their relative efficacies to increase medication adherence.

Electronic supplementary material The online version of this article (doi:10.1007/s00228-014-1761-3) contains supplementary material, which is available to authorized users. M. Kelly (*) : S. McCarthy : L. J. Sahm University College Cork, Cork, Munster, Ireland e-mail: [email protected]

Keywords Adherence . Medication . Attitude . Beliefs . Knowledge

Introduction When people become ill, they present with a variety of symptoms, and upon visiting their doctor, they will obtain a diagnosis which often requires them to receive prescribed treatments. Whilst the processes from the provider are relatively streamlined once the patient assumes control of the process, a set of variables exist which will impact upon their readiness to follow the advice given. Important variables which influence the likelihood of medication adherence are the knowledge, attitudes and beliefs of the patient. Medication adherence refers to “the extent to which patients take medications as prescribed by their health-care providers” [1]. The National Institute for Clinical Excellence (NICE) defines medication adherence as the “extent to which the patient’s action matches the agreed recommendations” [2]. Medication adherence is imperative to the process of managing chronic illnesses [3]. Good medication adherence is linked to positive health outcomes [4, 5]. The risk of mortality for adherent patients has been presented to be approximately half that of non-adherent patients [4]. Poor medication adherence is a significant barrier to successful treatment and is a challenge to health-care professionals [6]. Rates of non-adherence to prescribed medication, as reported in the literature, are variable and depend on how adherence is measured, the study setting (e.g. controlled or community samples) and the duration of follow-up. Furthermore, higher rates of adherence are usually observed in acute rather than chronic conditions [1]. It is estimated that between 20 and 50 % of patients are non-adherent with their medication [1, 3, 7]. Poor medication adherence can be linked to (i) the health-care team and system, (ii) the condition or illness

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and (iii) therapy and patient-related factors [8]. Therefore, it is clear that it is not solely the patient who is responsible for their ability to adhere to medication regimens [8]. With the fastest growing section of the world’s population comprising of elderly people, it is especially important to address rates of medication adherence in this age group [8]. The changing demographic, i.e. increases in the number of people aged 65 years or older, has a consequent effect on the prevalence of chronic disease [9]. In Ireland, 11.0 % of the population was ≥65 years of age in 2005; however, this figure is expected to increase to 24.2 % by 2050 [9]. People 60 years of age in developed countries represent 12–18 % of the population even though they are responsible for 60 % of medication-related cost [8]. Therefore, the increasing age of the population places further strain on health systems. This is yet another reason that medication adherence is an important issue. This review focusses on qualitative literature as it aims to gain an in-depth understanding of this topic. To increase the likelihood of positive patient outcomes via medication adherence, health-care practitioners need to understand and acknowledge the individual patient beliefs and attitudes that can adversely affect medication adherence [10]. It is also essential to assess the views of carers as they often take responsibility for administration of medications. Nonadherence with medication regimens is still a major issue and needs careful consideration to improve clinical outcomes [10]. Medication adherence influences patient outcomes in the form of mortality and morbidity; however, improving clinical and patient endpoints can be achieved through interventions that improve medication adherence [11, 12]. Patient and clinical outcomes are dependent on adherence to medication regimens; therefore, improving medication adherence is a worthwhile activity, particularly in an ageing population. This review will cohere evidence on knowledge, attitudes and beliefs of patients and their carers so that a better understanding of the motivating and demotivating factors for medication adherence can be established.

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the inclusion criteria. In cases where ambiguity arose about whether to include a study, consensus was reached by a majority decision of all researchers (MK, SM and LS). Inclusion criteria: & & &

Original research in the English language Qualitative articles including interviews or focus groups with patients or carers regarding medication adherence Participants of any age Exclusion criteria:

& & &

Reviews, meta-analyses, editorials, commentary or conference abstracts Use of questionnaires to elicit patient or carer views Quantitative studies on medication adherence

The process of study selection is described in Fig. 1. Data were extracted from the relevant articles by MK using a data extraction form. Citation lists of articles were used as secondary sources to identify further relevant articles. The selected articles were independently verified by all the researchers. A thematic synthesis approach was used to synthesise the data from the selected articles to aggregate the findings. Data from the result sections were analysed to develop line by line codes. Descriptive themes were generated from the primary themes. The descriptive themes were used to generate analytical themes which are presented in this article. Data in the form of quotes from the primary research is presented in this article to illustrate various themes. The excerpts which were selected provide the best illustration of the themes. Discussion between the authors throughout the analysis process facilitated the development of themes and interpretation of the data. All included articles were assessed for quality using the Critical Appraisal Skills Programme (CASP Qualitative Checklist) [13] and the Consolidated Criteria for Reporting Qualitative Research (COREQ) [14] guidelines. Results of quality assessment were used to moderate results included in this review.

Methods A systematic literature search was carried out in the following bibliographic databases: Embase, PubMed, CINAHL and Web of Knowledge from inception to November 2013. The primary researcher (Maria Kelly, MK) undertook the search with the aid of a medical librarian. A search strategy was devised comprising of four blocks of terms relating to knowledge, patients or carers, medication adherence and qualitative research (Figure 1.4 supplementary material). MK, LS and SM were involved in screening of titles for relevance for inclusion in the study. The abstracts of titles which were selected were reviewed by MK to identify studies that met

Results Study characteristics The search of four databases produced 608 results. On examination of title, 523 articles were excluded. Five articles were further excluded due to duplication. Full text articles were retrieved for 80 articles. Forty-seven articles were further excluded at this stage; 43 articles used a quantitative approach or were not directly related to the research question, two were review/editorial articles, one article was a commentary and

Eur J Clin Pharmacol (2014) 70:1423–1431 Fig. 1 Flowchart of study selection

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608 articles located using a search of four bibliographic databases

523 articles excluded based on title.

5 articles excluded due to duplications.

80 abstracts assessed using the Critical Appraisal Skills Programme (CASP Qualitative Checklist) [13] and the Consolidated Criteria for Reporting Qualitative Research (COREQ) [14] guidelines.

47 articles excluded as they did not satisfy the required inclusion criteria. 33 articles selected from search. 1 article included from hand searching

one article was available only as a conference abstract. Full text articles were analysed for 33 articles. One additional article was retrieved from reference searching of the remaining studies as outlined in Fig. 1. The results of quality assessment indicated that the majority of studies were of medium to high quality. The final review comprised 34 articles (Figure 1.2 supplementary material). Analytical themes There were eight analytical themes identified regarding the knowledge of patients and carers concerning medication adherence. Beliefs and experiences of medicines This theme was identifiable in 33 of the 34 studies and contained many sub-themes [15–47]. Polypharmacy (often defined as the use of five or more medications [48]) negatively impacted on medication adherence. It was seen as a barrier to adherence due to the physical difficulty of taking so many medications: “They sit in at least two different buckets. I bring in one bucket to the kitchen and gag down whatever, and then the next one. It’s really dreadful…Instead of taking two or three pills, I’m— you know, you can’t count. It’s just too many” [32]. Boyle et al. also showed that carers viewed polypharmacy negatively: “He says he will get mixed up so I have to give them to him” [19].

43 quantitative or articles not directly related to research question. 2 editorial/review articles. 1 commentary article. 1 article not available in full text.

Linked to polypharmacy was regimen complexity or pill burden. Participants often found it difficult to cope with complex regimens and noted: “the least amount of pills the better” [17]. Increasing the complexity of regimens was found to decrease adherence [17, 19]. However, the creation of a routine positively impacted on adherence: “You have to regiment yourself and get into a routine” [31]. Cues and visual reminders were also used by many patients to encourage adherence [35]. The consequences of non-adherence were observed as a motivational factor in many studies [17, 20, 25, 33, 34, 39–41, 43, 49]: “Well obviously if it helps then I’m quite happy to take them because I don’t want another one (stroke)…” [20]. Similarly, the benefits of medication were observed as a positive motivational factor to medication adherence [21, 30, 40]: “The medication cannot be stopped. I know this…this medication keeps me in the best mental health. I can live a normal life every day by taking the medication: it has also taken me away from darkness” [21]. Medication adherence also gave carers a sense of hope for the future: “Well I think it’ll—I pray…I feel it might improve a little better, because he’s on the medication” [36]. Another reason for lack of adherence was linked to the medication serving as a constant reminder of the disease: “The thing that affects me most is that any time you take any pill, it is a constant reminder of what you are taking it for. But 1 or 2 pills a day is a lot better than taking them all day because it’s not a constant reminder” [17]. Side effects had a negative impact on adherence [16, 17, 19, 20, 23–25, 27, 28, 30–32, 34–42, 45–47]. Patients often conducted a cost-benefit analysis in order to appraise the

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relative benefits of taking the medication when compared with the side effects and risks of non-adherence [23, 25, 28, 49]. In some cases, medication adherence was viewed as a last resort when symptoms were worse than side effects [23]. Furthermore, previous experience (of both the patient and their family and friends) with medication affected an influence on adherence [22, 24, 28]: “I really have no reason for taking them other than my mom said they would be great” [22]. In some instances, where total medication adherence was not possible, patients used their rationale to adopt a method of medication prioritisation in order to maintain partial adherence [22, 32, 34, 39]: “I tried stopping everything [all medications]. Then in a couple of weeks, I knew I couldn’t stop the hypertension medicine because I could feel the effects of that. I don’t get a headache unless my pressure is up…” [22]. There was a general dislike of taking medicines among patients with low medication adherence. This theme was displayed in many studies [20, 22–24, 37]. Family support and culture This theme was present in 14 of the studies [19–21, 27, 28, 30, 31, 35–38, 40, 42, 45, 46, 49]. The main sub-theme was related to patients noting that support increased adherence. This support could be in the form of administering the medication: “I bring them out every morning…and put them in from of him. I couldn’t trust him to take them himself… (although) I do forget sometimes” [20]. Alternative methods, where support increased adherence, was by providing a reminder about taking medication: “Oh, yes, well I…my sister, she’s got everything well organised (for me) on my wee meal table”. “God” also influenced adherence in a positive manner, which demonstrates the impact of cultural beliefs “I know God has my back” [30]. In studies of transplant patients, there was a strong emphasis on adherence due to a responsibility to the family of the donor and to the transplant team [31, 35]: “I think if you have that feeling (feeling upset that someone has died to give me the kidney) I think it’s even more important that you protect what you’ve got. We’ve all been given this chance. I can’t understand these people who don’t take medication, don’t try their best to keep everything” [31]. Role of and relationship with health-care practitioners The role of health-care practitioners and the relationship patients had with health-care practitioners had both positive and negative effects on medication adherence [15, 16, 18, 20, 22, 25, 26, 30, 32–34, 37, 40, 42, 46, 47, 49, 50]. Trust in a healthcare practitioner’s knowledge had a positive effect on adherence: “…The only thing I say is that the doctors are professional people, they went to college, they understand it, and

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they really understand what’s happening…And I rely on them for the medicine, I take their word for it” [29]. Conversely, one study identified how a negative relationship with one practitioner resulted in cessation of treatment for a patient [47]. The influence was related to trust in the professional knowledge that a health-care practitioner possessed and via the relationship between the health-care professional and the patient (listening and showing respect for patients): “I think he’s (doctor) absolutely fantastic—he was a man that you were able to talk to, you could ask him whatever you wanted there’s no such thing as he try to get you out as quick as you can you…I have a brother who’s just older than me…he told me he would have to go to his own GP and find out what were the diagnosis because he (the consultant), wouldn’t have time to sit down and talk to you and his manner also—absolutely diabolical” [49]. Factors related to the disease Factors related to the disease exerted a positive influence on medication adherence and was demonstrated in nine studies [15, 17, 18, 24, 37, 41, 42, 45, 47]. Patients believed that adherence was necessary to cope with their disease: “(After taking antidepressants) I started eating again. I feel more vital, I talk to my wife, I drive out”, “I would never have made it without drugs”, “You can decrease a little but never stop” [18]. Self-regulation This theme was present in seven studies [16, 18, 23, 25, 33, 37, 50]. The theme involves patients taking control of their own medication and altering doses as deemed appropriate by the patient: “Well yes, normally I use one pill and that’s enough. I should have two the doctor told me. But one is fine with me, it works excellent and I run not so big a chance to get addicted” [50]; “I think the individual has to experiment a little. I was on a high dose of medication and it was expensive too” [33]. Communication This theme was present in 21 of the studies [17–20, 23–25, 28, 31, 34, 36–40, 45–47, 49–51]. A number of studies reported that nearly every patient would have liked more information [18–20, 23, 28]. Similarly, Gordon reported that patients would have liked more information and sometimes patients felt that doctors were unwilling to communicate information, although doctors were seen as the main providers of information: “He (the GP) don’t tell me that this is for your heart and this is for your sugar and this is for something else. So I’m taking then for. I mean I don’t know what I’m taking these two at night for, right. They don’t tell you but you can’t get a word in (at the hospital) they keep rabbiting. I mean I can’t get a

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word in, she goes on about my leg and then my feet. I think doctors should tell you what you’re taking medication for. Not just going on the machines and just out you go. I thinks it’s bad” [25]. There was also confusion with regard to changing doses and regimens. The change could often have been initiated in secondary care, but communication to primary care could have been neglected [25]. Similarly, in a study by Bajramovic, the introduction of generic substitution was seen as confounding an already confusing situation [51]. Sacajiu reported how carers were not aware of changes to medication regimens, and frequent changes made it difficult to remain informed of the latest regimen: “Well I don’t know if she’s gotten any new ones. She did show me something she had. But like I said, she’s been off and on medication, I can’t keep up…I don’t know what she’s on anymore. Every time I turn around, like 1 day she came back from the hospital, she had a new medication. I have to sit down and talk to her, find out exactly what she’s on, because I probably need to know that, if she ever gets sick and I need to call the ambulance” [36]. Conversely, if a patient was fully informed, this could lead to increased adherence: “…because understanding the medication is part of understanding the condition, I am not just understanding what happened to me but also trying to make sure that it doesn’t happen again, so it is important to understand, for the patient, me to understand why I am on certain drugs” [34]. Cost Cost was seen as a barrier to adherence [24, 27, 28, 30, 33, 35, 36, 38, 40, 46, 51]. Bajramovic et al. noted that a large proportion of consumers perceive medication as too expensive which leads to non-adherence [51]. Similarly, Roberson noted that cost can lead to non-adherence or partial adherence: “If I see I’m about to run out and I don’t have no money to get no more, I just cut down my pressure pills to once a day” [33]. Lewis also discussed the limited financial resources, which sometimes encouraged non-adherence: “Your car is broken, you know. Come on, every time you get up, man, something just keeps you down. That’s what the struggle’s about. Just trying to push on and trying to persevere” [30]. Seventy-three percent of studies which listed cost as a factor involved in medication adherence were based in the USA, with the remainder in Australia, Portugal and Africa. Access Access to health-care services was an issue in two studies [18, 25]. Gordon raised the issue that the process of obtaining repeat prescriptions was often difficult and exerted a negative

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influence on medication adherence: “That [nifedipine] is the one I phoned them up about and she told them to tell the chemist to change it and then when she phoned in, she told him to double it. I said to him, ‘no way am I going to do that’” [25]. Lack of access to the care centre was seen as a barrier to medication adherence [18].

Discussion Non-adherence to medication is an immense problem in this country and on a worldwide scale. Average rates of nonadherence according to the World Health Organisation (WHO) suggest that 50 % of patients in developed countries with chronic conditions do not take their medication as prescribed [10]. On average, non-adherence costs European governments €125 billion annually and leads to the premature deaths of nearly 200,000 Europeans per year [52]. Lost opportunity for health gain is the outcome of nonadherence. It affects a vast array of stakeholders, the patient, the employer, the exchequer, the health service and the tax payer, and creates a myriad of further problems. The problems created include waste, increased pressure on the health service, loss of productivity, sick days and negative impacts on gross domestic product. This review provides an up-to-date synthesis of published qualitative literature on factors which can affect medication adherence; it serves to aggregate the original studies included in this analysis and aims to increase understanding of this topic and improve the description of the subject. A number of themes emerged that affect the views of patients and carers regarding medication adherence, which ultimately leads to adherence or non-adherence. The significance of this review lies in the fact that unless health-care providers understand and acknowledge the causes of nonadherence, they cannot develop and implement useful strategies to combat the problem. The findings presented are vital as they highlight the separate but interacting areas involved in patients’ and carers’ knowledge, attitudes and beliefs towards medication adherence. The review highlighted that beliefs about medication exerted a profound effect upon adherence, which has also been demonstrated in other studies [10, 44]. These beliefs can result in either a positive or negative influence on medication adherence in a similar manner which was described by Ponieman [53]. Two studies had a 100 % female population [40, 45]; both demonstrated that beliefs about medication affect adherence in a 100 % female population in a similar manner to that of a mixed gender population. No study had a 100 % male population. This suggests that gender may not have an effect on patient’s beliefs about medication. The negative impact of side effects upon adherence concurs with findings from other studies [54, 55]. This theme was

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present across studies irrespective of participants’ gender, race or medical condition. Linked to side effects were the concepts of polypharmacy and regimen complexity which exerted a significant negative effect on medication adherence [44, 56, 57]. This finding is comparable with other studies where the negative effects of polypharmacy and regimen complexity were also observed [54, 58–61]. This theme was identified in studies which included a range of diseases, ages, countries and races, thus extending the generalisability of this as a factor affecting adherence. Simplification of medication regimens offers a practical solution to this problem [59, 60, 62]. The review illustrates that cues, reminders and visual aids were used to overcome regimen complexity [63]. This also provides an opportunity for health-care professionals to provide assistance to patients [61]. Pharmacists are in a unique position to offer blister packing services and information to patients which may increase adherence [64]. Pharmacists can also contribute to increasing the health literacy of patients, which will empower patients, allow them to exert greater control over their health care [65] and may increase medication adherence [66]. Similarly, some papers in this review suggest that patients often balance the benefits and costs of medicines in order to determine if they will adhere to medication regimens [23, 25, 28, 49], which is replicated in the literature around this area [67]. Conducting such an analysis allows patients to take more control of their medication regimens and allows patients a certain degree of empowerment. Adherence and nonadherence based on this analysis were strongly influenced by patients’ perception of side effects, their condition and perceived implications of non-adherence, which was evident across all diseases, genders and countries. Financial issues from a patient perspective exerted a negative impact on adherence which was also presented in other studies [61, 68–70]. Many patients could not afford the prescribed medications and opted for partial adherence when necessary. Seventy-three percent of studies which listed financial issues were based in the USA, and the remaining studies were based in Australia, Portugal and Africa. The studies which illustrate this theme covered a range of illnesses. None of the studies from the UK raised the issue of financial issues as barriers to adherence. This raises the issue that the way in which patients access and finance their health care in a country impacts on adherence. Correspondingly, the implications of non-adherence also have a financial impact on health-care providers. Nonadherence leads to increased costs in the form of increased morbidity and hospital stays. Poor adherence is linked with increased use of health-care resources and adverse patient outcomes [3, 10, 71]. Therefore, the importance of ensuring that patients are adherent to medication regimens has significant cost implications for health service providers. The significance of this finding can be seen in the context of costs of

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medicines in Ireland. In 2007, under the community drugs scheme, €1.74 billion was spent on medicines (accounting for approximately 85 % of the national drugs budget) [72]. The community drugs scheme is administered to patients according to their medical or financial condition [73]. In 2011, this scheme covered a total of 1,853,877 persons or 40.40 % of the national population [74]. Furthermore, this figure increases year by year [72]. If the increase from 1997 to 2007 is replicated, then by 2017, we will see a fivefold increase from the level observed in 2007 [72]. Ireland’s expenditure on drugs is one of the highest in Europe at approximately 13.5 % of total health-care spending, which further emphasises the importance of this finding from a policy and pharmacoeconomic point of view [72]. If the medicines were taken as prescribed, then the cost would be justified and savings would be observed in the form of lower rates of hospital admissions. However, feedback from Dispose of Unused Medicines Properly (DUMP) campaigns indicates that a large amount of medications is not taken [75], which compounds the waste into a lost chance to improve health. In 2007, 12 tonnes of returned medications were disposed off in Ireland, with 34.3 % of this as unwanted or unused and 36.8 % returned due to a medicine cabinet clear out [75]. The cost of drug development is also very high and is now estimated to be greater than $800 million [75]. However, between these concepts lies the patient, who determines their level of medication adherence. Lack of access to health-care services and prescribers decreased adherence. The studies which listed access as a factor involved in adherence were focussed on mental illness and cardiovascular disease. Some patients described the complications involved in obtaining repeat prescriptions, which was also demonstrated by Beattie [76]. This finding presents a distinctive opportunity for pharmacists to provide detailed information to the patient and to offer services to streamline the process of obtaining prescriptions and medications, particularly for long-term conditions. These services could involve prescription collection and delivery services. Decreasing simple, inexpensive barriers related to access is vitally important when it has been estimated that the cost of hospital admissions as a result of non-adherence to prescribed medication lies between £36 and £196 million for 2006–2007 [2]. This review illustrates how the knowledge, attitudes and beliefs of patients’ need to be considered when examining non-adherence. Although many other variables can be controlled such as prescribing guidelines and supply of medicines, interventions to change the beliefs of the patients are a lot more difficult. Ultimately, these beliefs have a large impact on adherence. Therefore, the importance of this review lies in its understanding of these beliefs and attitudes. What is needed is for policymakers to understand the reasons for nonadherence and to support patients in their efforts to gain control of their illness and their health. This review contributes

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to understanding the mechanism involved in non-adherence, thereby providing valuable insights for policymakers.

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Limitations This review has a number of limitations. Firstly, as a number of these studies were carried out in specific populations such as heart failure, human immunodeficiency virus (HIV) and transplant patients, the results may not be applicable to the general population. Secondly, the review only included English language articles, and it is possible that different experiences with medication adherence may be evident in countries where English is not the first language. Thirdly, the initial screening and selection of studies were carried out by one reviewer, and therefore, it is possible that some relevant articles may not have been included. However, reference searching was carried out along with consultation with experts in the area; thus, the risk of missing relevant literature is low. Finally, the results are based on the credibility of findings in the original studies.

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Conclusion This literature review has demonstrated that there are a number of variables that have an impact on the knowledge, attitudes and beliefs of patients and carers regarding medication adherence. It has shown that beliefs and experiences of medication, family support and culture, role of and relationship with health-care practitioner, factors related to the disease, self-regulation, access, communication as well as cost and financial implications all influence the knowledge, attitudes and beliefs of patients and carers regarding medication adherence. This presents an opportunity to examine interventions to increase adherence and the possibility of favourable therapeutic outcomes via optimum medication adherence. Acknowledgments MK would like to acknowledge the assistance of Professor John Browne, University College Cork, Ireland who teaches PG7016, a postgraduate module in Systematic Reviews in the Health Sciences. This module was very helpful in the completion of this review.

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