Medication Non-Adherence Issues with Refugee and Immigrant Patients
The author discussed the subject of medication use with health care providers who work with immigrant and refugee patients at Harborview Medical Center in Seattle, including Community House Calls' nurse supervisor and caseworker/cultural mediators (CCMs) for Vietnamese and Somali patients. Information was collected via individual interviews with pharmacists, primary care and psychiatric providers in the International Medicine Clinic and through observations in the clinic pharmacy. The author reviewed and incorporated published literature, and integrated notes of a 2007 House Calls Community Advisory Board meeting where representative leaders of six immigrant communities were present.
Note: There is diversity within and among immigrant and refugee communities, representing many different cultures and experiences. This article reflects some of the more common issues related to medication non-adherence as reported by health care providers and community leaders who serve immigrants and refugees from many backgrounds. Effort was made in writing this article to not over-generalize and also to give specific examples where appropriate to help illustrate points. Medication non-adherence issues discussed here may not apply universally to all groups, and may also apply to non-immigrant populations.
Patients don't always follow providers' orders or advice. A patient's treatment may deviate from the prescribed medication and regimen. This is often termed non-compliance or non-adherence. The patient and provider may or may not know when this happens, and there may be any number of contributing factors or explanations. Some patients may be confused about their medication and need clarification, while others who are well-informed may actively resist complying with their prescribed treatment. There are various manifestations of non-adherence.
A patient may:
- Discontinue using prescribed medication
- Change dosage amount, frequency or time of day medicine is taken
- Modify restrictions and special instructions
- Initiate taking someone else's medications for a perceived common symptom
- Combine treatments such as:
- old prescriptions
- medications prescribed by different providers
- medications shared among family and community members
- over the counter medications
- medications brought from abroad/home countries
- herbal and other traditional medicines
- black market prescriptions
Non-adherence is a prevailing problem throughout the world. Proper adherence to therapies in developed countries averages 50% and the figures are much lower in developing countries given the reduced access to health care and educational resources.1 Many chronic illnesses that require long-term medication regimens have low adherence rates worldwide: depression (40-70%), asthma (43% for acute treatments and 28% for maintenance) and HIV/AIDS (37%-83%). Only 51% of American patients adhere to their treatment regimen for high blood pressure. 2, 3, 4
Among refugee and immigrant populations in the U.S., adherence may be lower. In one past study conducted at the Refugee Health Clinic (now the International Medicine Clinic) at Harborview Medical Center in Seattle, Lee et al. found that only 12% of Southeast Asian refugees (n=96) adhered to their prescribed medication regimens 5. Another, relatively more recent, study of Southeast Asian refugees by Kinzie et al. indicated that only 15% of patients adhered to their antidepressant regimens according to lab evidence (in contrast to patients' self-reporting higher adherence) 6. A study at the University of New Mexico (Sleath et al.) found that Hispanic patients were significantly less likely to be adherent to their antidepressant therapy than non-Hispanic white patients 7.
Clinical Features — Experiences with Western Medicine
Unfamiliar Long-term Chronic Disease Management Approach
Many patients visit the doctor only when they have physical symptoms. These symptoms may be due to an acute ailment or the effects of a chronic condition, such as asthma, hypertension, or diabetes. Patients from urban areas of developing countries are often accustomed to receiving medications at every doctor's visit to alleviate acute symptoms, but unaccustomed to long-term treatment regimens to manage chronic conditions. As a result, refugees who receive treatment for chronic conditions in the United States may believe themselves to be “cured” once symptoms stop. This false perception often leads to a sudden discontinuation of medication which can cause withdrawal or restarting side effects, as with medications like metformin, SSRIs and beta blockers. Patients may also discontinue a course of antibiotics when they begin to feel better.
Access to and Familiarity with Medications
In rural areas of home countries, there is very often poor access to health care, even to treat somatic symptoms. Medical care can be expensive and far away. As a result, Western health care as a whole may be a foreign experience. In the United States, care and coverage can be complex and expensive. Some patients may find themselves not knowing how to schedule appointments or fill a prescription. Some patients may assume timing of refills will correspond with timing of scheduled visits with the care provider.
In general, pharmaceuticals such as antibiotics are readily available without a prescription in the urban areas of many refugee patients' countries of origin. Medication is acquired from pharmacists, family members and friends often through unrestricted dispensing 8. Certain medications, such as laxative, aspirin and antibiotic are commonly kept on hand in homes, and some people continue this practice in the United States. In Seattle in 2007, a news investigation reported about a black market of prescription medicines that are sold without prescription in local shops that mainly serve poor, uninsured Hispanic customers who may believe they have no alternative for accessing needed medications. (See KOMO News)
Sharing and Storing Medicines
Sharing prescriptions and medical advice among family members and friends is commonplace. If a patient observes that a Western pharmaceutical successfully cured her headaches, she may associate the medication with that perceived effect and then willingly share the medicine with others who seem to suffer from the same condition. Patients may resist throwing away medication that is no longer needed or expired, believing it still has value and may be needed later. Some patients store different medications combined in a single container. Some medications, like antibiotics, may be brought from abroad and used in the United States. Travel medications, such as prescribed anti-diarrheals, might be misused and taken before travel or illness begins, and these may also be shared with family members living abroad.
Due to perceived strength or incompatibility, Western medication regimens are sometimes reduced or discontinued by the patient. Immigrants who subscribe to the humorally based (hot/cold) conception of illness, usually of Asian or Hispanic origin, report that Western medicine is too strong for their physiologies, causing them to become “too hot” and suffer an "internal heat", and therefore are not recommended when the patient already has low internal strength 9. For example, penicillin is considered a “hot” medicine and if given for a “hot” disease such as fever it is less likely that the patient will be adherent 10. Some Vietnamese believe that traditional medicines and even French medicine are more tolerable than American medicine, which may lead them to reduce their dose or seek more appropriate treatments from local community members or abroad.
“Dangerous to Combine” and “Build-up in the body”
In the U.S., patients often have complicated treatment regimens involving a multitude of medications that need to be administered at different times throughout the day. For some patients, taking multiple medications at the same time simplifies these treatment regimens. Other patients believe that combining different types of Western medicine is dangerous and they refrain from taking multiple medications at the same time, even when it is harmless. Some patients fear that medications taken for an extended period of time will “build-up” in the body over time, causing harm to one's health. Patients who believe this often discontinue medication earlier than prescribed.
“More is Better”
A patient may believe that Western medicine is capable of treating conditions better and faster if the dosage is large enough. If he believes his current regimen of cholesterol medication is proving ineffective, for example, a patient may increase the dosage himself. In such cases, the provider should emphasize that medication is most effective when it is followed according to the prescription. Additionally, the provider should stress the importance of behavioral changes, in this case, diet and exercise, such that the patient does not view his medication as the only way to manage his condition.
Just like the general population, some refugee or immigrant patients perceive name brands to be better. Some patients believe they are not receiving the best medication available if they are prescribed a generic or cheap brand. Patients identify their medication by both appearance and name, though appearance is more common. As red is a “strong” color, red medication is thought to be especially strong by those who subscribe to a hot/cold conception of illness. Patients may prefer certain colors and use color as a factor to gauge medication effectiveness. For instance, when the International Medicine Clinic (IMC) at Harborview Medical Center (HMC) switched from red and yellow name-brand capsules to a plain-colored generic brand with the exact same ingredient, patients complained that they wanted the red and yellow medicine because it worked better for them. Likewise, medicine dispensed in a container different than what a patient is used to receiving, may be perceived as being less effective even though the medicine itself did not change.
Larger pills, often vitamin supplements, tend to have lower adherence rates. In one instance, a Vietnamese patient suffering from potassium deficiency was prescribed potassium pills by her physician. On return visits, the patient's potassium levels were not increasing while the patient reported taking the pills as prescribed. Taking the patient's word at face value, the physician continued to increase the dosage at every visit until it reached the maximum allowable intake. The patient then tearfully admitted that she never took the medication because the large size of the pill made it difficult to swallow 12.
Preferred Methods of Taking Medicine
Generally, shots given in clinic, liquids, and topicals are perceived as being more effective than pills and produce better adherence rates. When there is the option, patients will generally prefer medications in the form of shots given in clinic over the orally-administered alternative due to positive experiences with injections, usually IV hydration, in their home countries. The same is not true for shots given at home, such as insulin, which are not preferred. From the standpoint of adherence, shots given in clinic are better because providers can witness that the medication is taken.
Patients with heavily stigmatized diseases such as TB, HIV/AIDS, STDs and mental illnesses may experience social labeling and isolation. Some diseases are traditionally equated with a low quality of life or with death. Patients may be unaware of Western medicine's ability to manage and/or treat such conditions. Antidepressants are highly stigmatized, and may be seen as appropriate only for those defined as “crazy.” Some patients may believe taking antidepressants will actually lead them to become “crazy”. Patients who are affected by stigmatized conditions often attempt to hide the disease by privately consuming their medication. In turn, the medication often becomes synonymous with the disease and becomes stigmatized itself. Though the treatment may be effective, social pressures may lead some patients to skip doses or discontinue it altogether.
For more information and specific examples about stigma, see in EthnoMed:
- HIV/STD Infection among the Vietnamese
- Pearls of Cross Cultural Care: The Stigma of Tuberculosis in Refugee and Immigrant Communities
Medications are often discontinued when the side effects are so unpleasant that they outweigh the intended benefits. The duration of adherence may depend on how long the side effects may be tolerated given cultural health concerns, such as interference with body parts or processes that have cultural importance, or interference with social duties or life routines which are gender specific (e.g. those related to menstruation) 13. Even though some side effects dissipate with continued use of a medication, as with the diabetes drug metformin, some patients stop and re-start the medication without allowing enough time to experience the side effects fading. Successful pharmacy counseling might consider a balance between directly monitoring for side effects at follow-up appointments versus fully explaining about fearful rare side effects. Some patients who were told that their statin medication could cause muscle aches, for example, assumed that even their preexisting aches were due to the medication side effects. This led the patients to stop taking their prescriptions. In a different example, a patient believed that checking his blood sugar induced a side-effect of stress because it made him focus on his condition, so he did not check his blood sugar in order to avoid that stress.
Cultural Knowledge and Traditional Treatment
There may be differences culturally in how the patient and provider conceptualize illness and treatment, including differences in understanding:
- the cause of the condition
- the timing and mode of onset of the symptoms
- the pathophysiological processes involved
- the natural history and severity of the illness
- appropriate treatments for the condition
Traditional healing encompasses a variety of curative practices and medicines. Once in the United States, refugees and immigrants will often want to maintain these beliefs and practices. Some may use traditional medicine in combination with Western pharmaceuticals, while others may prefer one over the other. Patients who have chosen to combine traditional and Western medicine are often hesitant to inform their Western health care providers of their alternative treatments because they fear or expect disapproval. Providers need to openly explain to their patients that often traditional and Western therapies can safely combine into effective treatment plans, as long as there is open communication.
There are situations in which therapies may interact adversely and it is important for providers to know about traditional remedies their patient is using. See related article in EthnoMed: Chinese and Western Herbal Medicine: A Guide to Potential Risks and Drug Interactions. When addressing this, providers should be aware that some patients would not classify their remedies as herbal medicine, but rather parts of their daily diets, such as green tea, garlic, and ginger. All three of these remedies are known to affect the efficacy of warfarin, an anti-coagulant. Even binging, or relative binging, on leafy greens (rich in vitamin K) will reduce warfarin's efficacy. It is necessary to ask about any and all changes in dietary habits 14 keeping in mind that patients and providers may think differently about what constitutes a change. For example, patients who fast at regular intervals for religious reasons might not consider the fasting to be a change in their diet, even though for periods of time it might be that meat products are not eaten and vegetable consumption increases (which could make patients susceptible to changing levels of warfarin).
Many patients are most comfortable in a health care setting when they are cared for by a member of their own gender. Especially in the realm of reproductive health, women tend to prefer female providers and interpreters. Male patients often prefer male providers and interpreters as well, so gender concordance is highly recommended for patient care whenever possible. Patients may not feel comfortable or trust the opposite gender so may not fully disclose personal information.
Illiteracy and Low Literacy
Not being able to read in English and/or a native language can prevent patients from receiving crucial medical information and can impact adherence to medication. Issues include not reading pharmaceutical labels, not learning a medicine's name, instructions, and restrictions, not understanding education materials. When literacy is an issue, a patient is often unable to check prescriptions for accuracy. Even for patients who can read, instructional and educational materials may be written at too high a reading level making the information difficult to understand.
Low health literacy
Health literacy can be defined as the degree to which a person is able to obtain, process, and understand the basic health information needed to make appropriate health care decisions in a modern biomedical setting 15. As health literacy is a product of a certain degree of formal education and an understanding and acceptance of a Western biomedical framework, refugees and immigrants tend to experience disproportionately low health literacy compared to the general population.
Giving and receiving accurate treatment regimen information requires time. Providers may want to repeat and revisit education about prescription use over time. While time constraints are a ubiquitous problem of the U.S. health care system, they disproportionately affect non–English speaking peoples. Interpreted visits require more time as each line of information must be passed through a third party. However, Tocher et al. found that the average duration of an interpreted visit (17 minutes) was not significantly different than an English–only encounter 16. As a result, the actual time given to discuss and clarify information was only one-half to one-third of the total time of the appointment 17.
Poor adherence to pharmaceutical treatment has been found to be significantly more prevalent among non-English-speaking patients compared with their English-speaking counterparts 18. In the event of a language barrier, ad hoc interpretation (often English-speaking family members or friends who accompany a patient to appointments) may facilitate provider-patient communication. This can lead to errors and a possible violation of confidentiality. In addition, older patients who are accustomed to an age-based power structure may feel helpless or upset when their English-proficient children assume this position of power over them. A more successful method for overcoming the language barrier is the use of trained medical interpreters. It has been shown that errors made by ad hoc interpreters were significantly more likely to have clinical implications than those made by professional interpreters (77% vs. 53%) 19.
Trust and Communication
A patient who has discontinued or altered their use of a medication might not openly discuss it with the provider, especially if trust has not been established in the relationship. Patients might try to avoid being perceived as disrespectful or displeasing to a provider who they see as a figure of authority. A physician who sees no improvement in a patient's condition and believes the patient is taking medication as prescribed, may increase dosage and unwittingly pose a danger to the patient who might then begin taking the medicine. Some patients are unaccustomed or distrustful of American providers who may merely “recommend” a medication, or do not prescribe any medication at all. Some patients may expect their providers, without negotiation, to prescribe a medication that will alleviate current symptoms of acute or chronic conditions. When left without a prescription, some patients interpret this to mean that their providers are unsure or misinformed.
Patients are often willing to share cultural information but don't readily offer it without being asked, feeling that providers don't know about, understand or might even judge, their cultural practices and perspectives. However, once they are asked about religious fasting, for example, most patients are happy to discuss their medication regimen as related to the fasting time. Some patients may be overconfident in the Western health care system, demonstrating unquestionable trust in providers who they see as expert and incapable of error. In the event of a labeling error on a prescription, these patients may think the change in medication was intentionally made by the physician. Some patients assume they don't need to learn about self-management of disease or to participate in lifestyle modification, such as with paying attention to causes of low blood glucose, because they trust that the doctor is the only one who can make their condition better.
Recommendations for Providers
- Use objective evidence to assess adherence, including digital glucometers, lab results, or monitoring of the patient's refill history.
- Ask patients to bring in every medication that they are taking at every visit (even if it is not their own prescribed medication). If they have poor adherence and are always forgetting to bring in their medication, it is not unreasonable to cancel appointments until patients bring it. Encourage patients to bring in all bottles for assessment. Sometimes, adherence can be assessed by looking at the date on the container's label and by counting the remaining pills.
- Particularly when deciding to adjust dosage or medication for a condition that has not improved, a provider should not only rely on the question “Are you taking your medicine?” to evaluate adherence. A “Yes” response from the patient may not necessarily mean there is full adherence. Further exploration and confirmation of a patient's medication use is warranted. Recall that some patients may say yes to not disappoint their doctor.
- Ask open ended questions and avoid questions that result in yes or no answers. A patient with high blood pressure and increased doses of medicine told the pharmacist he always takes his medicine as prescribed. Later in the appointment he was asked how often in a week he misses doses and then he replied 1-2 times a week. He also mentioned that he was taking his medicine if his blood pressure was good that day. Ask questions like: When was the last time you missed a dose? How many times in a week do you not take your medication? What side effects do you have with your medicine? How do you take your medicine?
- Explain timing of refills as it does or does not correspond with the timing of next scheduled visit with the care provider.
- Use a trained interpreter when language is a communication barrier.
- Be proactive in getting to know and build trusting relationships with patients.
- Take the time to explain the diagnosis, cause, and treatment regimen clearly. State the realistic expectations for treatment such as potential side effects, dietary, environmental, and/or lifestyle restrictions, and an expected timeline of improvement, if it can be reasonably estimated.
- Ask questions about intake of traditional medicine, herbs, fasting periods, etc., and about other possible cultural factors that may influence adherence.
- Elicit patient's understanding of diagnosis.
- Explain the rationale for each prescribed medication. Label the pharmaceuticals with the corresponding condition or symptoms.
- Use commonly understood symbols on labels (e.g. Sun=morning, Moon=nighttime)
- Providing pictures and written information in the target language and English can be helpful. Many patients have family who can read English, and some patients can understand basic English, especially numbers.
- Avoid complicated medication regimens, when possible, by reducing the number of medications or the number of doses per day. Simplify regimen as much as possible to meet the patient's needs – for example, it may not always be possible for a patient to take medication 30 minutes before eating food.
- Educate patients on how to use treatment–related devices such as inhalers, glucometers, etc. Revisit and repeat the education/demonstration over time as needed.
- Emphasize the importance of continued use of the prescribed medication even if symptoms subside or are altogether absent (for chronic conditions).
- Suggest reminder tools such as Medisets, medication organizers, or alarm systems.
- Balance an authoritative role over the patient by being decisive but also allow for safe treatment modification based on the patient's self-perceived needs.
- Explicitly tell patients not to share medication with other people, even to treat the same or similar symptoms.
- Tell patients to throw out old/expired medications or take them away yourself at time of visit. Patients may believe in rationing or saving old or unnecessary medication, leading to confusion or non-adherence later.
- Educate patients when brands or packaging changes, that the product may look different but the medicine is the same medicine.
- Have the patient tell you at the end of the appointment what you told them so you can assess their understanding and recall.
- Offer to provide community education about chronic diseases and effective medication usage in the communities of your patients.
- At Harborview, the Caseworker/Cultural Mediators (CCMs)and the Community House Calls program may help address adherence issues by way of case management and home visits with some patients.
Patient Education Materials
“Take Medicine Safely” and “Facts about Generic Drugs”
Healthy Roads Media makes translated information available in several languages in movie-style tutorials, audio narration and printed handouts.
- Organización Panamericana de la Salud (Sept. 2003). Poor adherence to long-term treatment of chronic diseases is a worldwide problem. Washington.
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- World Health Organization. Adherence to long-term therapies. Evidence for action. Geneva: WHO; 2003.
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