Systemic Lupus Erythematosus (SLE) is an autoimmune disease that affects organ systems throughout the body, including the joints, internal organs, nervous system, and skin. 1.5 million Americans have lupus, about 1 in 200 people, 90% of whom are women and African Americans, Hispanics/Latinos, Native Americans, Asians, Alaska Natives, Native Hawaiians and other Pacific Islanders are hugely overrepresented among people with lupus. Each person with lupus can have a wide range of symptoms, so management is unique to every patient and can be a complicated mixture of medications and therapies.
Sticking to medications can be difficult for many reasons. People with lupus often have trouble with this, also known as medication adherence. According to the CDC, approximately 50% of prescriptions are taken incorrectly. This is particularly true for people with lupus who are also minorities, and they suffer the consequences in the form of more intense symptoms and more frequent flares. Unfortunately, treatment teams and researchers have a major obstacle for solving this problem: there can be many reasons for not regularly taking medications, so it can be difficult to find a solution.
What happens if someone is noncompliant with their medications? Simply put, the medications or therapies cannot do their jobs if they are not done. The symptoms of the disease remain or get worse – in the case of lupus this can involve joint pain, the manifestation of new symptoms and a higher frequency of flares. It benefits both patients and medical professionals to take medications regularly, but it’s not as simple as telling a patient “just take your meds!”
Why do People Not Stick to Their Meds?
In a study published in Arthritis Care and Research in October 2022, researchers followed 77 patients to see if they could figure out why people are medically noncompliant. The study found that communication was a major issue for people with lupus. Doctors spoke too quickly, used words that were not at the patient’s level, and did not adequately explain the medication. The patients were left to manage their medications on their own with a lower than optimal amount of information, and they suffered for it.
This is, however, only a part of the reason why someone might not be compliant with their medications. A 2019 survey noted that the medication or therapy itself can be the issue, with side effects or methods of administration that the person with lupus might not be able to handle regularly. The disease might make it difficult to take the medication to treat it, such as causing intense joint pain and preventing physical therapy or causing fatigue or nausea and making pills more difficult to take. Staying “compliant” can be a major task – or multiple tasks – that overwhelms the patient. They find themselves unable to keep up with medication and life without overextending themselves.
Healthcare Accessibility and Medication Compliance
The accessibility of healthcare is also an issue that people with lupus struggle with. If it’s difficult to access health care, or even just to access the same trusted people, it becomes more difficult to keep up with treatment.
Barriers to effective management of lupus include a chaotic home environment, a stressful or dangerous work environment, an unsafe neighborhood, being unable to access appropriate care due to monetary or other restraints, and even taking care of other members of the family with lupus. Read more here about the many complications that lupuswarriors face when trying to manage their lupus. You can read more about the social determinants of health – the health cost of racism and income – here.
However, communication between patient and physician, health literacy derived from that communication, and the degree of trust that the patient has in their physician were noted to be the most important factors.
How Do You Overcome Noncompliance
If you have trouble keeping up with your meds, telling you to “just take them” isn’t going to cut it. People with lupus already have a lot of responsibilities they are juggling, and not enough energy to get to it all. Sometimes medication and self-care fall by the wayside. You can read more about chronic illness and managing energy here.
The patient and medical professionals alike will have to do more investigating to find out why a person with lupus isn’t taking the medication or keeping up with the latest health recommendation. Figuring out what’s holding back a person with lupus will allow patients and medical professionals alike to tailor the therapy. Hopefully, they can make the therapy something that the patient can stick to and provide the most benefits. The benefits can be huge, but most would say that finding the root cause and tailoring a solution can be a big ask.
Explanation, Education, and Compliance
When medical professionals explained the medication, its purpose, its side effects, and how to take it clearly, taking medication was made easier on the patient end as well. The better the relationship is between patient and provider, the more likely it is for patients to keep up their treatments. However, communication and trust are real issues, and this extends to the patient’s outer world, too. Family and friends sometimes just do not get the struggles of people with lupus and aren’t able to provide the support network that patients need to thrive. Better communication between medical providers, people with lupus, and their support networks need to be done all together, will help overall health (let alone outcomes!)
Better communication and trust can be built up by having good, old-fashioned conversations during appointments. Though these can be difficult to have in the time crunch of modern medicine, the benefits for patients and medical professionals are well worth it. These conversations also have the effect of dispelling medical misinformation, a common cause of noncompliance.
Keeping it SIMPLE
Medical professionals are advised to “keep it SIMPLE.”
- Simplify the treatment regimen to make it easier to get through
- Impart knowledge about the treatment and disease to allow the patient to make more informed decisions about their illness and treatment.
- Modify beliefs, both of the medical professional and the patient. Both parties can sometimes have belief structures that they hold onto tightly that can influence patient care. Keeping an open mind and being willing to change belief in response to facts can help treatment and compliance immensely!
- Patient and family communication is important, since the family is often a support system and they also need to know how treatment works in order to assist.
- Leave bias behind – finding one’s biases is the first step to recognizing where they might be interfering in care, on either end. This doesn’t just mean race: people make assumptions about other people due to education, word choice, neighborhood, and a number of other factors. It is important to recognize when stereotypes are influencing the patient-provider relationship and to work around them.
- Evaluating compliance regularly will be key to finding the right treatment solution. Keep checking in to see what changes are working and what changes are not, and then tweak the regimen to match.
The SIMPLE strategy addresses many of the issues that cause noncompliance, so it is very advisable to use it. To a degree, this same lack of trust and dialog is also part of what causes lupus misdiagnosis.
Diversity, Communication, and Lupus
It is well known that, in addition to being more likely to develop lupus, minority groups also have worse medical outcomes. This is due to many factors, including racial inequity in the medical field both on the patient and provider ends. It is now commonly understood that this has less to do with genetic differences and more to do with socioeconomic differences brought on by racism. One of the causes of these poorer outcomes is due to low medication compliance in these groups, which in turn is due to a lack of trust and education in these communities.
As diversity improves within the medical profession, trust between patient and provider might get less thorny and compliance will improve. It’s easier to trust someone who looks like you or is from the same or similar background: you feel that they are on your side and may be more sympathetic to you. Matching the ethnicity of the doctor with that of the patient can help with trust, and this has been known to actually translate into better medical practices and outcomes for people with lupus, so it’s something to keep an eye on. However, until there is more diversity in medicine, this remains challenging.
Patients want to feel like they are being listened to, like their doctors care about them and are paying attention. If they don’t feel that way, they aren’t as likely to trust advice from a medical professional. Unfortunately, you – the patient – sometimes must be the one push for a discussion.
Tips and Tricks for Improving Your Compliance
Noncompliance happens on the patient end, but people with lupus: It’s not entirely your fault! You have real lives and many burdens. Unfortunately, Doctors are often rushed and it can be hard for them to start the conversations that lupus warriors need. Taking an active role in one’s health, perhaps by using internet resources, and having discussions with providers can also help improve compliance. Knowing some questions to ask can get the discussion started. When you know what’s supposed to be happening, you not only advocate for your health more, but you are more likely to follow appropriate instructions.
Here are some things that you can do to make medication and therapy easier on you:
- Forgive yourself. You are doing your best with a very frustrating disease and navigating healthcare and life are both difficult roads. You are only human. Slipping up is okay – you can find ways to do better.
- Find out what is going on in your life that’s causing the issues. Is it the side effects? Are you just not remembering to take a battery of pills every day? Does your life and lifestyle make pills or exercise difficult? Is it simply too chaotic to take care of yourself properly in the mornings? There can be many causes, but the first step is to find them all.
- Start a conversation with your doctor when you can get a visit. Working together with your treatment team will be key to tailoring your plan to fit your needs and life.
- Recordkeeping and research can help you find the questions you need to ask in order to start the discussion about lupus and treatment. Read more about recordkeeping and lupus here.v
- Figure out, with your treatment team, which aspects of your treatment are the most important and which ones you can slip up on without issue. Prioritizing can help with compliance as well as feelings of guilt.
- If the treatment team is not responding, try changing your routine, putting the medications or medical equipment in a different location, or bringing medication with you. Depending on your troubles, a small change can make all of the difference.
- What happens at home is important too – build a support network and figure out a support ‘treatment’ to help you.
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