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Vol. 54, No. 3, March 2008, pp.384 - 393 Copyright © 2008 by The College of Family Physicians of Canada
Do patients expectations influence their use of medications?Qualitative studyLisa Dolovich, PharmD MSc, Kalpana Nair, MEd MSc, Connie Sellors, Lynne Lohfeld, PhD, Annie Lee, MSc(T) and Mitchell Levine, MD MSc FRCPC FISPEDr Dolovich is a Scientist and Associate Director, Ms Nair is a doctoral student and Dr Levine is Director of the Centre for Evaluation of Medicines at St Josephs Healthcare in Hamilton, Ont. Ms Sellors is a pharmacist and a Lecturer in the Department of Family Medicine at McMaster University in Hamilton. Dr Lohfeld is an Assistant Professor in the Department of Clinical Epidemiology and Biostatistics at McMaster University. Ms Lee is a pharmacist and Structured Practical Experience Program Educational/Site Coordinator in the Leslie Dan Faculty of Pharmacy at the University of Toronto in Ontario Correspondence to: Dr Lisa Dolovich, Centre for Evaluation of Medicines, 105 Main St E, Level P1, Hamilton, ON L8N 1G6; telephone 905 522-1155, extension 33968; fax 905 528-7386; e-mailldolovic{at}mcmaster.ca Several studies have established that medications are not always used optimally1–6 and that the medication prescribing and use system is multifaceted and complex.7 Although many health problems can be linked to the fact that medication prescribing practices are not standardized, these problems have also been attributed to underuse of medications, poor adherence to medication regimens, or lack of monitoring once medications are prescribed.7–10 Evaluation of prescription claims data shows that patients persistence with medications for chronic illnesses, such as antihypertensives,11 osteoporosis medications,12 oral diabetic medications,13 and antilipidemics,14–16 is poor. There is an obvious disconnect between prescribers intent to use medications to improve health outcomes and patients decisions on whether to continue taking their medications once their prescriptions have been dispensed. Given the aging population and an increased focus on optimal medication prescribing and use practices, it is important to ascertain the factors that affect use of medications. In most clinical situations, patients make the final decision about whether they start or continue taking a medication. This decision is at least as complex as the assessments physicians, pharmacists, and other health care providers make when choosing or monitoring the effects of medications for patients. We set out to further explore patients perspectives on this issue. Within the literature on use of medications, one underexplored area is patients expectations of their medications. An expectation, defined as "a thing that is expected to happen,"17 is likely to be an important contributor to decisions health care providers and patients make about whether to prescribe or use a medication. Disagreement between health care providers and patients expectations of medications could lead to inconsistent implementation of a medication-use plan and result in unintended adverse drug events or unrealized health benefits for patients. The aim of this study was to explain the influence of patients expectations on their use of medications.
Design This study used qualitative research methods, and a grounded-theory approach was used to develop a model of factors linking patients expectations of medications with their behaviour regarding taking medications.18,19 The main research questions addressed in this study were as follows: what expectations do patients have of their medications and what factors influence patients expectations of their medications. This study received ethics approval from the St Josephs Healthcare Hamilton Research Ethics Board.
Study sample Participants were community-dwelling adults 18 years old and older who had been taking at least 1 medication for 6 months or longer and who had not been receiving formal assistance with their medications (eg, home care). Participants were recruited through notices posted in local newspapers, on hospital bulletin boards, in pharmacies, and in hospital volunteer offices, as well as through personal appeals to 4 local family doctors, of whom 2 provided patient contacts. Interviews continued until saturation was reached and no additional information was forthcoming.22
Data collection
Data analysis
Rigour of the study
Characteristics of the 18 study participants are shown in Table 1. More than half the participants (61%) were women. Mean age was 58.1 years (standard deviation = 18.7). The mean number of medications taken was 7.5 (standard deviation = 5.2). Nine respondents (50%) were taking cardiac medications, 8 (44%) were taking psychiatric medications, and 11 (61%) were taking medications for arthritis or other nonspecific pain. The 2 medications patients identified as their most important are listed in Table 2.
A theoretical model, using standard grounded-theory components, was developed to show the linkages between patients expectations of their medications and their behaviour regarding taking medications (Figure 1). This model centred on patients expectations and the strategies through which they arrived at them (eg, discontinuing medications on their own, lowering doses or skipping medications, or confirming their expectations by gathering information from health care system or public sources). The degree to which patients acted as a result of their expectations of their medications was influenced by various contextual and intervening factors. Each of these components is described below, and it should be noted that there is some overlap between components in this model. For clarity in presentation, each component is described separately. Where quotes are noted, participants ID numbers followed by text unit numbers are provided in parentheses.
Central phenomenon The central phenomenon was patients expectations of their medications. These expectations were generally more realistic than idealistic. For example, most patients were not expecting their medications to be "miracle cures" but instead viewed them as one element that could help improve their medical conditions and daily lives. Patients expectations of their medications were primarily expressed in terms of testing out medications or validating them by gathering information on them. Although many patients followed their physicians directions for taking medications, others tested their medications in various ways. Patients reporting testing medications on their own by discontinuing them, lowering doses, increasing doses, or skipping doses. This testing seemed to indicate an active response on patients part to try to maintain their health in a manner that worked for them, as the following quotes suggest: I tried stopping everything [all medications]. Then in a couple of weeks, I knew I couldnt stop the hypertension medicine because I could feel the effects of that. I dont get a headache unless my pressure is up ... and I was getting them again. So when I told my doctor [he said], "Oh, my goodness. You mustnt stop that one." And then when I went off the other, Synthroid, [he said], "Oh, you cant stop that." So those were the 2 that I went back on. (B121–242) Another manifestation of patients expectations of their medications (mentioned by 8 of 18 respondents) related to a lack of information on their medications. Patients often sought to confirm their expectations of what a medication could or could not do by seeking information from the health care system or public sources. In some cases, patients thought their physicians withheld information about side effects because they did not want patients to experience them. Yet patients expressed a desire to be more informed so that they would be able to develop accurate expectations of their medications. As one participant explained, Not all patients are ignorant in the true sense of the word. I want to be told side effects and interactions and troubles or problems. I really want to understand things. (B201–160) Patients wanting information used several strategies to find it. For some patients, adverse events spurred them to seek out further information. Others gradually recognized that they could ask questions and get information as they continued to live with their medical conditions. Participants used a variety of information sources, such as doctors, pharmacists, the Internet, the library, and friends. Of particular note were positive comments about pharmacists and their accessibility with regard to information. I never realized how important pharmacists were because I never needed medication. But now I realize how very, very informed and very knowledgeable [they are] and [they] can be extremely helpful and supportive. (B191–362)
Four main consequences resulted from patients following medication-use plans that aligned with their expectations of the medications: the medications prevented or treated symptoms or signs, patients ability to manage day-to-day activities improved, patients ability to cope with their medical conditions improved, and patients experienced side effects. Almost all participants talked about how their medications affected the symptoms or signs of their medical conditions. In some cases, this included slowing the progression of disease or alleviating the severity of symptoms: "Well, I expect them to do the job which the doctor says that I need. It does to a degree, I would imagine. It stops a heart attack, and it does bring my blood pressure down." (B132–78) For most people, medications were seen as a way to help manage life and conduct daily activities. Some participants also noted that taking their medications led to an improvement in health that also allowed them to do things that otherwise they might not have been able to do: "It allows me to do those things which I want to do, such as go on a vacation, or take a trip up to the northland, or go over to the seniors club, play some cards, or what have you. And [it] allows me to sit and do my carvings and ... play music." (B132–70) For some patients, taking medications was seen as a way to cope with their medical conditions. Though somewhat related to the first expectation of prevention or treatment of symptoms and signs, some participants went on to comment further about how this allowed them to cope with their health concerns. This highlighted the emotional toll some medical conditions take on patients and the value patients ascribe to medications: "I think a lot of people dont realize that its necessary to take a lot of medication. Sometimes, they [others] think, I think they think you take it because youre not doing something else, you have an alternative, you could do something else. It is annoying, theres no doubt. There are times when I say, Id like not to take it. Stick around and Ill show you what will happen if I dont." (A011–259) Some patients were able to describe specifically what they wanted their medications to do. They were looking for a particular, tangible outcome from their medications (eg, reduce exacerbations of multiple sclerosis or alleviate depression). Not surprisingly, this was more evident among participants whose medical conditions greatly affected their daily lives: "They [medications] allow me to be on an equivalent level to other people. They allow me to handle things a bit better. For the first time in my life, Im not at the mercy of my moods, and Im not in the depths of depression, which is worth a million to me." (B091–127) Most respondents (15/18) reported some type of physical or emotional symptom that they thought was a side effect of medication and indicated that such experiences influenced their expectations of medications. Some adverse effects were tolerable, some were not: "[the medication] created heartburn so bad I thought I was dying" (B121–21); and "Side effects were as bad as the depression itself." (B111–126) Some adverse effects were tolerated no matter how severe they were because participants knew they would eventually become comfortable with them or they thought that treating their medical conditions necessitated continuing the medication. Some side effects were considered a long-term concern that could give rise to problems in the future. Most physical signs and symptoms reported were systemic, usually related to the central nervous or gastrointestinal systems. Some respondents discussed unexpected adverse effects. Participants who had these typically had not been informed about them or had not realized that adverse effects might occur, sometimes because they had too much information to process when they were ill. This situation seemed to heighten their emotional reactions to the situation: "This narcotic that I take for the pain, I didnt ask [the pharmacist about it]. I ended up after taking one, (thinking), Good God! Whats the matter with me? I felt its nauseating and almost disoriented." (A011–219)
Contextual factors are specific factors that influence the central phenomenon in a grounded-theory model. In this study, there were 2 main contextual factors associated with patients themselves that influenced their expectations of their medications: their beliefs about medications and their previous experiences with medications.
Patients beliefs Good grief! Eight pills for supper, wonderful! [sarcastic tone] But then I look at it the other way and I say, "Well, without those 8 pills, I cant go for a walk, I cant do the shopping." Youre grateful in many ways that the medications are there. (A011–155) The way in which medications affected patients control over their health also influenced their expectations of their medications. Some respondents noted that medications gave them control over their health; others thought that the act of taking medications took away control over their health. Perceptions about control over health affected whether patients expected medications to promote or reduce their chances of having good health. Some people described having to adapt their lives to their medications if they were taking a lot of medications or had many health problems. Others had incorporated taking medication into their lives so that they could still do everything they wanted to do: "I think it makes you feel somehow in control, because the medication can take control of your life very easily. And its not pleasant to feel that these bottles of pills determine where Im going and what Im going to do today." (A011–163) Although taking medications was associated with the concept of taking control over health, very few participants thought taking medications was unduly onerous. Beliefs regarding the need for medications varied. Most participants valued their medications and identified a clear need for them, but some believed that they should not take too many medications or any medications at all. This typically resulted from a perception that prescription medications are not needed to improve health and that alternative medications are a better choice. For others, there simply seemed to be an artificial threshold that reflected an optimal number of medications. Overall, beliefs about taking medications seemed to reflect a feeling that taking fewer medications was better than taking more medications: "I wasnt brought up like that, to take medication .... No, I was brought up to be as normal, as natural." (B121–157)
Previous experiences with medications
Intervening factors are a broader set of circumstances that affect the central phenomenon. Participants discussed 3 main intervening factors: other peoples beliefs about medications, their relationships with their health care providers, and the cost of medications.
Other peoples beliefs Another patient was taking 10 medications a day and told us how people close to her questioned whether taking so many medications was really necessary, the implication being that, if she just "tried harder," she could rid herself of a supposed dependence on prescription medications. This patient very powerfully described how these views affected her life: They [friends, family] used to hurt my feelings. They used to make me think that maybe I am taking too much medication, maybe I could cope with less. I try not to justify it any more. I try more just to say "Well, without it I cant function." It gets tense. They make you feel very, very, somehow inadequate, somehow less than everyone else. But unfortunately, [medication] carries a stigma with it. It takes a long time to get past that with so much medication. (A011–267)
Relationships with health care providers Well, I must say my physician that I have now is much more open. We talk about things. I told her I want a partnership .... I like this very much as an option [compared] to the old way of "Im prescribing this, this is for you, you take this." But it also puts responsibility on you. You have to be responsible if youve chosen something. And sometimes if youre not feeling very well it puts you in a bind because you have trouble making decisions, so thats tricky too. I guess, in a case like that, I would say, "Im really not up to making a decision at this time. I would like you to make it and we can review it at a later time." (B191–381)
Cost of medications
This study found that patients expectations of their medications are grounded in the reality of their experiences, beliefs, and health care or social situations rather than in idealistic ideas or beliefs. A preliminary model demonstrated that patients expectations were manifested through activities that helped them confirm or modify their belief that their medications were working as hoped. Such activities included testing the effectiveness of medications by independently discontinuing them, changing doses, or skipping medications, and by gathering information about medications from health care system or public sources. An unanticipated finding in this study was discovering the extent to which many participants acted on their expectations without seeking the advice of their health care providers. For example, some changed their medication regimens before talking to a doctor or pharmacist after independently assessing how the medications seemed to help or harm their health. Patients independence was also discernable in their search for information about medications (eg, information on benefits and risks) that could confirm their preliminary expectations. The patients in this sample used numerous sources of information to understand better what they could expect from their medications. Patients who thought they were not informed about a medication before taking it and then experienced side effects were dissatisfied that they had not been given enough information before initiating therapy. These negative experiences led to negative expectations (ie, patients thought they were more likely to experience side effects) of new medications. On the other hand, some patients expected that the medications they were prescribed were going to benefit them and so they did not as often act independently of the health care system to test their medications or seek more information about their therapy. Many participants thought they lacked information or access to a reliable source of information about their medications. These patients likely made risk-benefit assessments without full knowledge of the medications known risk-benefit profiles. This finding is corroborated by numerous studies demonstrating that patients need more information about their medications.25–28 Despite this need for more information, participants easily identified their important medications, which were those that considerably decreased mortality and morbidity, prevented substantially undesirable outcomes (eg, seizures, unwanted pregnancy), or reduced or prevented debilitating symptoms. Patients beliefs and other contextual factors that influenced their behaviour regarding taking medications were consistent with other theories that explain patients behaviour, such as the Health Belief Model,29 the Planned Behaviour theory,30 and the work of Horne and colleagues on beliefs about medications.31–33 The work of Horne and colleagues in particular reinforces the importance of examining how beliefs affect whether patients think they need a medication. The finding that use of medication is related to control over health is consistent with the findings of studies on what medications mean to people with epilepsy34 or schizophrenia.35 Some respondents in this study, however, believed instead that taking medications took away their control over their health. Thus, patients beliefs about how medications affect their control over their health could influence their expectations of their medications in many ways and might result in their independently testing medications or seeking more information about medications. The literature has also documented the fact that patients test or make changes to their medication regimens. Dowell and Hudson found that patients often test medications before fully accepting the need for them.36 Benson and Britten found that patients who thought they were experiencing unwelcome effects from their medications adjusted them themselves to address the situation.37 Better communication between patients and health care providers could help patients be more engaged in monitoring their progress on therapy, be able to identify medication-induced adverse effects more effectively, feel more fully informed about the therapy they are receiving, and better understand why medications are prescribed (especially for medications that treat conditions that have no symptoms, such as hypertension or hyperlipidemia). Awareness of patients expectations can also help physicians, pharmacists, and other health care providers to identify and discuss situations where patients expectations are different from their own. This could help reduce gaps in information about drugs and make better plans for monitoring. It is also possible that, as physicians and patients discuss their expectations, physicians prescribing would become more aligned with particular patients needs. Britten and colleagues work has highlighted the need for physician-patient communication about medications and the need for a conscious recognition of the expectations that each brings to medication prescribing and use.38,39 Another notable finding was the mention of stigma related to medication use. Although only described by 2 participants, this finding highlights an emotional burden that influences expectations of medications and medication taking. Further research into how patients conceptualize and experience stigma around taking medications would add to the literature.
Study participants were volunteers and thus could reflect people who want to have or have had more involvement in decisions about health care, who think they can take on more responsibility for their health themselves, or who are in some other way atypical of usual community-based adults taking medications long-term. Participants were purposefully sampled, however, to include patients with a range of diseases who were taking a variety of medications so that the study would benefit from gathering diverse ideas and thoughts.
A range of factors (most notably past experiences with medications and relationships with health care providers) influenced patients expectations of their medications. Increased discussion between patients and their health care providers about these factors could ultimately affect whether medications are used optimally.
This study was funded through grants from the Father Sean OSullivan Research Centre, St Josephs Healthcare, and the McMaster University Research and Aging Program in Hamilton, Ont. We thank the patients who gave their time to share their experiences with us
Contributors Dr Dolovich, Ms Sellors, and Dr Levine conceived and designed the study. Dr Dolovich, Ms Sellors, Ms Nair, and Ms Lee were involved in data collection. Dr Lohfeld provided methodologic expertise and guided analysis of the data. Dr Dolovich, Ms Sellors, Ms Nair, Ms Lee, and Dr Lohfeld analyzed the data. Dr Dolovich drafted the article and Ms Sellors and Ms Nair provided initial feedback and revisions. All the authors had input into the manuscript at various stages, and all the authors gave their approval to the final version submitted. None declared This article has been peer reviewed.
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