The use of medicine impacts a patient's life on many levels. Many patients state that medicines are prescribed without consideration of their personal issues and some patients report unmet expectations and the need for medicines information, particularly on how to manage an integrate medicine routines into their daily lives. Health care providers in attention to patients lived experience is also a key barrier that makes patients develop negative perceptions towards medicines. Understanding the patients experience with medicine is key to combat these issues. The PLEM Model is one of the most thorough and recent models developed for describing and explaining patients experience with medicines. The model can be used for summarizing and understanding different aspects of patients lived experience with medicine. In this lecture, I'll walk you through the central parts of the model and illustrate the different components with real life patient stories and quotes. The quotes will hopefully give flesh and blood to the model and make it more understandable. All quotes come from real patients, the majority of which have actually participated in research projects. The names of the patients are made up. The model was developed by three Australian researchers after they had selected 34 studies from a pool of more than 4,000 studies about patients medicine use. The studies showed that patients experience with medicine are influenced by the three interrelated major things, medication-related burden, medication-related beliefs, and medication taking practice. The model is not the truth about all patients in the entire world but it's a structured way of mapping the three things. Though patients experiences with medicines can be positive, negative, or both. Patients in all the 34 studies had experienced at least one of the following five types of medication-related burdens. Let's take the burdens one by one. Burden of medication routine: This is one of the burdens most often experienced by patients. It deals with how patients manage the hustle of medicines, and how they tried to find strategies to solve challenges or routines. Here's an example. Jack is a 91 year-old man suffering from cardiovascular diseases, who has his medicine dispensed in doses containers. Jack takes the medicines on other times than suggested in the dose dispensing scheme. Instead of taking it throughout the day, he takes it before going to bed. "It turns out then that I don't have to get up to the toilet so often at night, I take diuretics and those three," he says pointing at the tablets. "I only take them in the evening, which gives me a more restful night when I've taken them. Because then I get the effect of the diuretics during the day and not at night." Burden of medication characteristics: This burden is also noticeable among many patients. They struggle with the number of medicines, the pill size, the shape, the exchange of medicine brands, the challenges of opening the packages, etc. Here's an example. Simon is an 11 year-old boy who is using painkillers. After struggling with swallowing these tablets, he came up with a simple solution strategy. "Well, I took half at a time, half a Panodil (acetaminophen) because then it's not so big. I broke it in half and then a took it for two days, took half and then half. Finally, I tried with a whole one and I could do that too and now I can also take, I think I could take two in a row." Burden of medication adverse events. This is one of the most challenging aspects of living with medicines. Adverse events affect the patient's quality of life and is often related to emotional distress. Here's an example. Janet is a 46 year old female and she says, "Well, I'd like to get rid of the Abilify. It costs me a lot of weight gain. I gained over 30 pounds and I've never had a problem with weight before that." Medication-related social burden: This refers to the social influence on medicine use and the impact of medicines use on patients social life, such as holidays, visiting family or friends, stigma, lack of public understanding, social isolation, low self confidence. Altered relationships with family and friends are described by many patients following medicine use. On the other hand, the benefit of social support, for instance, family members in assistant self-care and proper medicine use is fortunately also evident. Susan, a 21 year-old woman, dealt with a social burden of taking antidepressants by being silent. "I haven't told my friends about it either. Why not? Because I'm afraid of their reaction. I told one person and now he doesn't talk to me anymore. I'm afraid they're thinking, 'wow, she's as loony as a coot.'" Health care and associated medication: This is one of the most widely sided dimensions of medication related burden. It's got to do with the challenges of being a recipient of health care in a complex health care system. Patients struggle with healthcare delivery, provider patient relational aspects and the financial burden of health care services and medication costs. Time spent on travel and waiting time in health care facilities to attain medicines alongside transportation costs are also voiced by many patients as common burdens. Attending multiple facilities, traveling extended distances, appear to intensify the burden. Here's an example. Liam is a young type one diabetic who struggled with his repeat prescriptions. Liam is generally positive about his experience of services, but he also describes issues with managing his prescriptions. "I find it a little bit frustrating at times because it's all repeat stuff and then occasionally things won't be in and I have to chase them. I get frustrated on occasions if I'm running low on, whatever it is, needles or insulin, and they say 'Oh, won't be in till Monday.' That's probably my only real bugbear." The next part of the model deals with medication related beliefs. Patients are positive toward medicine when they trust in the health care professional, when the medicine helped them to fulfill social roles and when they achieve desired therapeutic outcomes. This gives patients hope, which motivates them further to be persistent in using their medicines. For example, Christine, a 70-year-old person suffering from angina pectoris, says this about her medication, "I don't mind taking medication. Well, I'm glad that there's something that helps". Another example of a patient who accepts her medicine is Sylvia. She's the 34-year-old who uses Serotonin Reuptake Inhibitors. She says, "I can still get thoughts that frightened me. But I can let go of them again - the thoughts. They don't stay here and I can't do that without the medicine". Many patients, however, also hold negative attitudes toward medicines, mainly linked to the negative past experience. Check for example Paul, a man in his late 50s. He also suffers from heart problems, uses medicines for hypertension and for preventing angina pectoris. Paul says, "I've been brought up with the basic principle that you shouldn't take any medication unless it's absolutely necessary. We shouldn't fill ourselves with all that crap, it's poisonous stuff". A third patient, Peter, 52 years old, he also suffers from angina pectoris. He stands in the middle, so to speak, holding conflicting views about medicines and talks about medicine as a necessary evil. "I don't like having to take the medication, but I don't dare not to". These three angina pectoris patients use more or less the same medicines, but have totally different views of their medicines or, in other words, they have very different medication beliefs. This goes to show how patients views of medicines are personally bound. Patients' attitudes towards medicine are also influenced by concerns, fears about potential side effects or dependency on medicine after long-term use. Here's an example. Alexandra is a middle-aged woman who uses medicines for anxiety and depression. "They kept saying that you can't get hooked on them (red: the medicines), but I am, because I feel ill, if it don't take them, physically ill." Family, for example, spouses and friends, can also influence patients' beliefs about medicine and impact the patients' behavior towards medicine. Cultural issues introduced early in life are also important factors forming medication beliefs. Sanya, for instance, she's in her mid-seventies and she's gone through some rough times personally. She's been diagnosed with leukemia and has a very high level of iron in her blood. But apart from that, she's generally well. In her hand she holds a very small tablet, a sleeping pill. Then she says to me, knowing that I'm a pharmacist, "this medicine can't be that dangerous - look how small it is, this tablet." This is Sanya's way of thinking. The smaller the tablet, the smaller the danger and thereby her fear of taking it. Besides, Sanya has checked her thoughts about the medicines with her friends and now she asked her daughter, who is a pharmacist. She uses a network for feedback, reassurance, and information. In conclusion, the ability to cope and engaged in proper use of medicines is associated with patients' self perception and prior experience with medicine use and health care services. Many patients state that medicine routines interfere with personal and social life beyond their ability to cope. One might say that patients want so-called minimum disruptive medicine, enough medicine to help the patient keep up his/ her social life, but no more than that. The last part of the model deals with medication taking practices. Basically, there are two major categories of patients. The ones that accept the medicines and their corresponding regimen, reinforced by good experience with medications, good resulting outcomes from medicine use and good relationships with health care personnel, and patients who self-regulate their medicine intake. They might alter the dose, they might stop or replace medicine with alternative treatments. Patients self-regulate due to intolerable adverse events, medication costs, inadequate medicine information, or fragmented healthcare. Patients typically can and will shift between these two patient categories, reducing or increasing doses, skipping doses, or discontinuing or restarting medicines. A patient's way of evaluating the effect of their own medicines and discover doses that suit their lifestyle. They often do so without the knowledge of their health care professionals. Patients balance the burdens and the benefits of medicines. Let us again take an example. Julia, she's a 70-year-old woman suffering from apoplexy and cardiovascular diseases, who has the medications dispensed in doses containers. She's an example of how patients make decisions about their medicine intake on the basis of former experiences and how they don't always tell the doctor about their different way of taking their medicines. "I take them out and count them, and then I throw the laxative away. It's not something I've discussed with the doctor. It's just that I have a tendency to get diarrhea, which is extremely impractical when you're paralyzed on one side." Not taking medicines as prescribed by the doctor, so-called non-adherence, is widespread all over the world. Patients change their way of using medicines because it makes sense for them, following their experiences and convictions about the medicines. Other examples are the three angina pectoris patients from earlier, Christine, Paul and Peter. They all come from a larger study, which were on 118 angina pectoris patients medicine use. Twenty five percent of these patients had actually used their medicines the way they felt like. They had self-regulated the medicines in order to feel control, to reduce side effects and to create a feeling of self-determination. Those were the three components of the model which made up Patients Lived Experience with Medicine, who altogether influenced patient's well-being and health related quality of life, and also negative therapeutic outcomes. These components may influence each other and change over time. For example, health care providers in attention to patients lived experiences, in ability to provide information, particularly on how to manage and integrate medicines routines into their daily lives, may make patients develop negative perceptions towards medicines. Let's take a look at Elma, she's 27 years old and uses selective serotonin reuptake inhibitors, medicines against depression. Here is how she initially felt about her medicine. "It was like the pills would go in and control me. That I wouldn't be part of the process." But after a while, Elma got used to the medicines and said, "You go from not living to living a normal life." This illustrates that patients can also change attitudes towards medicine. What was first the medication-related burden for Elma, slowly turned into a medication-related satisfaction and a practice of acceptance. To sum up, we've seen from the patient cases, that patients use medicine in accordance with their experiences, including their previous medications. That, patients balance the effects and side effects of medicine by increasing and decreasing the dose, so as to make the medicine fit into their daily life. That, patients who don't take medicines or take reduced dosages, can be doing so out of denial of the illness or because of a general mistrust in health care practitioners or pharmaceuticals. That patients feel more in control with their illness/ disease if they themselves regulate how they take their medicine and that a patient's social network has an impact on the patient's perspective on medication and their medicine use. That patients have experiences, reflections, intentions, rationals, and feelings that they have values. We must appreciate these values if we want to apply a patient perspective on medication. In the next two videos, you'll hear how two real-life patients perceive their medications and how they deal with them in their daily life. Thank you for your attention.
