Straight Talk | Patients Face Range of Challenges when Seeking Treatment for High LDL

CardioSource WorldNews | From confusion about medications to high costs and preauthorization difficulties, patients can encounter many challenges when seeking effective, appropriate care for high LDL cholesterol. CardioSource WorldNews interviewed patient advocates and clinicians working in this area to find out how these obstacles might be negotiated for more effective cholesterol lowering.

With clinicians often pressed for time, many patients leave a consultation unclear about their condition, its implications, and what they can do to help manage their care. Katherine Wilemon, founder and CEO of the FH Foundation, explains that misunderstandings are particularly likely among patients with familial hypercholesterolemia, whose “condition is not in the public conversation.” To aid in understanding, patient advocate Debbe McCall encourages patients to “learn all you can before your appointment about your disease process. Practice your top 2 or 3 questions so you can ask them without too much detail.” McCall adds that asking patients how they would explain the clinician’s advice to their children offers clinicians a non-patronizing way of gauging understanding and providing clarification. Requesting that a non-English-speaking patient bring an English-speaking relative (or friend) to an appointment can facilitate communication in the clinic and reinforce adherence at home.

To ensure patient buy-in and understanding within time constraints, Seth Martin, MD, MHS, associate director of the lipid clinic at the Johns Hopkins Hospital, often “has a discussion with a patient, then gives them additional information or refers them to the reliable web sites like the FH Foundation or from the ACC to read up more. Then we can come back and further discuss it and make a much better decision together.” Lynne Braun, PhD, CNP, professor at Rush College of Nursing and Medicine, also stresses a team approach: “Some of my physician partners will refer patients to me because I have time to be patient with getting the patient on a regimen they can tolerate.”

Patients who lack a clear understanding of their condition may also be less likely to adhere to treatment. McCall stresses that clinicians must convey “that this treatment is preventing a life-changing event, not just lowering a number.” Additionally, booking patients in for follow-up bloodwork 30 days post-treatment initiation may provide evidence of a drug’s benefits and an opportunity for patient encouragement. Patients should be reassured that adverse side effects are rare and the clinician is available to address any concerns arising before the next consultation. To prevent inadvertent nonadherence or adverse drug interactions resulting from misunderstandings, clinicians should always ensure they have a clear picture of the drugs a patient is taking before providing a new prescription or advising drug cessation.

Even patients who understand their condition may experience pill fatigue, particularly if they take multiple medications, as is often the case with FH. Wilemon reports that “maintaining a treatment regimen and advocating for themselves become a part-time job for some of those who are most affected.” Patients may find a transparent pill box provides an easy indication of whether drugs have been taken. Braun advocates simplifying the daily regimen when patients report pill fatigue, perhaps allowing patients to take their statin medications with other drugs in the morning if the statin will otherwise be the only medication taken at night.

Cost can also be an obstacle to obtaining appropriate care, particularly for patients requiring multiple drugs to lower cholesterol, as is commonly the case for patients with FH. Dr. Martin advises discussing cost explicitly, asking patients to contact their insurer about costs, and, when possible, offering more than 1 pharmacotherapy option. If no options are affordable, referral to a patient assistance program is advisable.

Lengthy preauthorization processes are another potential barrier to effective care, with patients requiring newer drug therapies (e.g., PCSK9 inhibitors) most likely to be affected. To maximize the chances of successful preauthorization, Dr. Martin stresses appropriate patient selection based on FDA indications and the 2016 ACC Expert Consensus Decision Pathway on the Role of Non-Statin Therapies for LDL-Cholesterol Lowering in the Management of Atherosclerotic Cardiovascular Disease Risk. Meticulous documentation and continued monitoring of the process are also essential. Where available, a specialty pharmacist can guide both patients and clinicians. Lynne Braun advocates mapping out the process, “letting patients know that this approval is not going to happen overnight and that the next phone call they receive will be from our specialty pharmacist.”

Finally, effective treatment also requires efficient care coordination to ensure patients do not go unmonitored or—as is too often the case with FH—undiagnosed. The clinician should ensure that the patient has a primary care provider to coordinate care. If the patient does not have a relationship with such a provider, helping to establish such a relationship can assist greatly with ensuring adherence, minimizing adverse drug interactions, and identifying problems early.

Visit for more information on ACC’s LDL: Address the Risk quality initiative.

Read the full November issue of CardioSource WorldNews at

Clinical Topics: Dyslipidemia, Lipid Metabolism, Nonstatins, Primary Hyperlipidemia

Keywords: CardioSource WorldNews, Cholesterol, LDL, Hyperlipoproteinemia Type II

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