Perceptions of Patients With Primary Nonadherence to Statin Medications

Derjung M. Tarn, MD, PhD; Maureen Barrientos, BA; Mark J. Pletcher, MD, MPH; Keith Cox, MA; Jon Turner, PhD; Alicia Fernandez, MD; Janice B. Schwartz, MD


J Am Board Fam Med. 2021;34(1):123-131. 

In This Article


Ten focus groups were conducted with 61 total participants. Participants were mostly middle aged and without CVD (Table 2). All participants met screening criteria for primary nonadherence to statins within the past 2 years, but it became apparent during the discussions that 4 participants (in 3 focus groups) had taken statins in the distant past.

Four major themes describing patient perspectives about starting a statin medication emerged from all focus group discussions: 1) desire for alternative treatments, 2) worry about the risks of statins, 3) perceptions of good personal health, and 4) uncertainty about the benefits of statin use. We also present "minor themes" that emerged from some but not all focus group discussions, as well as themes related to provider-patient relationships and interactions that influenced patient decisions about starting a statin. Below we describe each of the major themes in detail (Figure 1).

Figure 1.

Framework describing major categories of information patients consider when newly prescribed a statin medication.

Major Themes Related to Primary Statin Nonadherence

Desire for Alternative Treatments. Almost all participants expressed a desire to pursue alternative treatments before starting a statin (Table 3). Alternatives ranged from lifestyle changes (eg, exercise, dietary changes, weight loss) to dietary supplements and "home remedies." Participants often mentioned wanting "natural" treatments such as red yeast rice, vitamin E, and cinnamon. One participant noted, "…as an alternative, I have bought an over-the-counter plant sterol gummy and I've been taking the gummies for a while." [FG8:P3] Another participant's experience involved visiting "a health food store, and they recommended some herbs to take, like garlic, fenugreek, turmeric, ginger, omega-3, flaxseed… I will make a smoothie every other day and include the herbs." [FG4:P7] Home remedies included boiling avocado leaves and drinking the resultant tea. Other approaches included yoga and following a holistic lifestyle.

Participants mostly felt no urgency to start statins. In addition to wanting alternatives, some wanted to repeat their cholesterol test, do other additional testing, or get more information about statins. Many stated they were willing to start a statin if alternative treatments were ineffective.

Worry About the Risks of Statins. Almost all focus group participants worried about statin side effects (eg, liver damage, muscle pain), which they typically read about on the Internet or heard about from friends or family. Participants also had concerns about worsening existing medical issues and about potential interactions with other medications, for example: "Because if you are on a lot of medications…it seems like it conflicts a bit." [FG9:P4] Some were apprehensive about creating new problems, for example: "Problem that I see, it causes like a domino effect. You take one medication for one thing, and it causes something else to happen, so then you have to take another medication to counteract the problem that the side effect is causing." [FG2:P5] Those with a family history of diabetes were particularly concerned about statin use leading to diabetes.

Perceptions of Good Personal Health. There were several subthemes describing participant perceptions of personal health. A few participants felt that statins were unwarranted because they had no medical problems or were too young. Others noted they had a healthy lifestyle, no family history, or no symptoms. Some said immediate statin use was unwarranted because their cholesterol was only slightly above normal, for example, "I found myself healthy. Just a little change in the cholesterol. It does not mean I have to start [a statin]." [FG7:P4]

Almost all indicated they would start a statin in a "life or death" or "life-threatening" situation. Some said they would consider a statin if their cholesterol became "really high," if they had worsening health, or they started eating more unhealthy foods. One participant noted, "If I knew that I was in serious probability of having [a heart attack], I would probably think twice about taking it." [FG9:P2] Many said they would take a statin if they had a heart attack, stroke, or heart disease.

Uncertainty About the Benefits of Statin use. Some participants seemed to have a poor understanding about the benefits of statins. For example, a participant with heart disease revealed a disconnect: "If there's a medication that I could take that would help with my heart problem and prolong my life, you know, that is a no-brainer. You take it." [FG7:P5]

Some participants correctly noted that statins lower cholesterol levels. But many questioned the benefits of statins, with some asserting that statins are not that helpful or important, and others suggesting that the evidence for use is unclear: "even though medical studies say that…the benefits will be such in such, what it turns out that in many cases that is wrong, and on later stud[ies] that information is wrong." [FG3:P6] A handful were unconvinced that 10-year cardiovascular event risk calculators appropriately incorporated their personal characteristics. A minority questioned the link between cholesterol and CVD. Several also felt that cholesterol treatment cutoffs were arbitrary. Participants mostly failed to understand the concept of personal risks for CVD; discussions often turned to the risks of statins when the term, "risk," was mentioned.

Minor Themes Related to Primary Statin Nonadherence

Participant Hesitation About Medication use. Many participants generally resisted taking medications. Those already taking medications hesitated to add another prescription. Some felt that taking too many medications was detrimental. Those naïve to chronic medications were resistant to starting one. Two patients conceded they were in denial; one acknowledged, "I am kind of like more in denial. By taking [a statin], I am admitting I have a problem." [FG10:P2] One patient mentioned, "I wanted to avoid having that stigma of having to go on Lipitor. I mean, to me, there's a stigma, maybe kind of some type of judgment that others make when they would find out." [FG7:P3] Some felt that medications were overprescribed, with doctors tending to pursue a "quick fix." [FG6:P7] Other participants talked about not wanting a daily medication, feeling hesitant about taking a medication for the rest of their life, or dosing regimens that were difficult for them to follow.

Prior Experiences Contributed to Hesitation to Take Statin. Prior experiences that influenced participants included experiencing adverse medication effects, hearing about others' negative experiences with medications, or having prior success lowering cholesterol with nonpharmaceutical therapies. As one participant noted: "there's other drugs that I've taken that have had side effects, and so I just do not need another drug that has side effects." [FG1:P2]

Mistrust of Pharmaceutical Industry. Participants in 8 of 10 groups voiced concerns about pharmaceutical companies influencing prescribing: "I am inclined to think…that some doctors are paid commissions for prescribing medicines, their medicines, by their pharmaceutical companies." [FG8:P2] Another participant noted, "I can be cynical enough to think that the pharmaceutical marketing may actually impact the guidelines. You and I all know that they have been milking millions of dollars, pouring into vacations and cars…and I do not know who writes those ever-changing opinions about when should somebody start [a statin]…" [FG1:P2]

Medication Cost. Only a handful of participants cited cost as the primary reason they failed to fill their statin prescription. High costs mostly served to reinforce participants' hesitation, for example: "I had to come out-of-pocket for $75.00. I was like, no, I am not going to do that. I think that if I go natural, I will feel much better. I will put less side effects on my body and I will have to pay less." [FG10:P3]

Themes Related to Provider-patient Relationships and Interactions

Mistrust of Prescribing Provider. Several participants felt unsure about starting a statin because it was prescribed by a provider they had never seen. Others wanted their primary care provider's approval before starting the statin: "I did not feel like the hospital cardiologist was equipped or knew enough about me to prescribe medication to me other than my PCP." [FG10:P2] Poor provider-patient relationships and mistrust also contributed to primary nonadherence.

Inadequate Provider Communication About Statins. Communication lapses were important. One patient shared that his doctor "…did not even say anything, just told that they were sending me the pills." [FG5:P5] Lack of shared decision making deterred patients from filling statins, as did patient perceptions that providers did not care or were not very worried about a patient's cholesterol. Two patients did not realize their provider prescribed a statin until their pharmacy notified them. As one described, "I got a notice on my cell phone, a text message, that I had another prescription and I was confused. He had sent, this doctor, which I'd never seen before, had sent a prescription for Lipitor [to the pharmacy], which I did not fill because I felt like I was not informed. I did not know what it was for." [FG7:P2]

Participant Comments on Disclosing Nonadherence to Providers

During focus group discussions, not all participants commented about disclosing their nonadherence, but 20 of 61 participants stated that they had not told their providers about their primary nonadherence. Half of these participants were planning on telling their provider, but a few believed it was disrespectful to question their provider's recommendations, and were hesitant to bring up their primary nonadherence. Of 26 participants who told a provider about their primary nonadherence, 19 (73.1%) indicated their hesitation at the time of prescribing and the rest during a follow-up visit.

"We're not all the Same"

One focus group participant summarized the need for providers to individualize approaches when prescribing statins, by addressing aspects of the major themes that might prevent patients from starting a statin:

"Some people just get that prescription, go and pop the pill, and they're done. Other people need an explanation…need to understand what all the ramifications are if I do this and if I don't do that and so on. And so you have to, as a medical professional, adjust the way you approach your patient. And so, if you see someone's reluctant, you have to be able to either explain it in a way—if you really believe that this would benefit the person, explain it in a way that they are, let's say, convinced, which is maybe too strong a word, or demonstrate it by doing other tests and giving some more data because…we're not all the same. Different people need different information." [FG1:P4]