CaregiversMultiple Myeloma

The Role of Caregivers in Ensuring Patient Adherence to Oral Oncolytic Therapy

This article outlines the role of caregivers in ensuring that patients adhere to their oral treatment regimen for multiple myeloma to achieve the best outcomes.
Conquering The Multiple Myeloma Continuum Series Two
Lillie D. Shockney, RN, BS, MAS, HON-ONN-CG
University Distinguished Service Professor of Breast Cancer,
Professor of Surgery, Johns Hopkins University School of Medicine
Co-Developer of Work Stride—Managing Cancer at Work
Johns Hopkins Healthcare Solutions

Over the past several years, there has been a dramatic shift in the way multiple myeloma is being treated, with an increasing trend toward the use of oral oncolytic therapies. Many patients are embracing the advantages of oral oncolytic therapies, such as ease of administration and the convenience of taking these medications at home, which translate to fewer visits to the healthcare team, less disruption of daily activities, and a better quality of life.1

However, although the self-administration of oral medications empowers patients, it also places an added responsibility on the patient of taking the medications as prescribed; this is known as “adherence,” which the World Health Organization defines as “the extent to which a person’s behavior—taking medication, following a diet, and/or executing lifestyle changes—corresponds with agreed recommendations from a healthcare provider.”2 This article outlines the role of caregivers in ensuring that patients adhere to their oral treatment regimen for multiple myeloma to achieve the best outcomes.

Medication Nonadherence

Until the advent of oral oncolytic therapy, cancer treatment was typically administered on-site at hospitals and clinics, and medication adherence was assured, because physicians and nurses knew the exact dose of medication the patient received and over what period of time. The cancer care team also monitored for side effects related to the treatment, and made appropriate dose adjustments or provided specific treatments to manage the side effects.

However, in the case of oral cancer drugs, patients and their caregivers are now responsible for adhering to complex dosing regimens and taking the correct medication doses in a timely manner, monitoring any symptoms, and alerting physicians or nurses when they experience side effects, and adjusting the medication doses as instructed by the healthcare team.

Deviations from the prescribed dose and schedule can have many economic and medical consequences. For example, it is estimated that nonadherence (across all health conditions, including cancer) to medications results in 125,000 deaths annually in the United States, and accounts for up to $300 billion in healthcare costs.3,4 In patients with cancer, poor adherence to medications contributes to lower medication effectiveness, disease progression, resistance to medication, disease complications, increased physicians visits, hospitalization, and death.5

Not adhering to medications exactly as prescribed is quite common, even among patients with cancer, ranging from 20% to 100% of patients in some cases.6 Elaborating on the extent of nonadherence among patients with cancer, Lee Schwartzberg, MD, Medical Director at the West Clinic, Memphis, TN, who participated in a study that analyzed data about prescription abandonment, stated, “Our key finding is that 10% of patients who are prescribed their first oral oncolytic never even pick up the drug. They don’t have the opportunity to get benefit from their treatment. Also, one quarter delay getting their prescription, sometimes as much as 90 days. Here are patients with advanced cancer who need therapy now, and they are not getting it.”7

The reasons for nonadherence are varied: some patients may simply forget to take their medications or find it difficult to follow complex directions. For example, some patients may not take their medications at the right time or with appropriate foods.7 Other patients may deliberately modify their medication dose and/or schedule, or stop taking their medications altogether as a result of unpleasant side effects, because they feel better, or because of financial constraints.

The prescription abandonment rate for oral oncolytics was as high as 25% among patients whose out-of-pocket costs were more than $500, and 16% among patients with Medicare coverage; patients who take multiple medications or have a lower annual income are also at an increased risk for abandoning their prescription.7

On the other end of the spectrum, intentional overadherence can occur when patients wrongly assume that ‘more is better,’ and, as a result, take a higher dose of their medication, or use it more frequently. Overdosing can also occur because of patients misunderstanding their treatment instructions; for example, if they take a medication once daily rather than the intended once weekly.

For the best treatment outcomes, oral oncolytics must be taken at the prescribed dose, schedule, and length, and increased vigilance is required to ensure that medication errors do not occur, and that side effects are monitored.

Importance of Caregivers

Family caregivers play an important role in the effective treatment and care of patients with cancer, including promoting medication adherence. According to the report from the National Alliance for Caregiving and the American Association of Retired Persons, a caregiver is either a paid professional (eg, nurse or home aide) or a family caregiver (or informal caregiver) aged 18 years or older who assists the patient with a variety of tasks of daily living, such as bathing, eating, finance management, shopping for groceries, and housework.8

Caregivers spend a considerable amount of time interacting with the patient, while also providing care in different settings. It is estimated that more than 50% of family caregivers provide at least 8 hours of care weekly, and approximately 20% of caregivers provide more than 40 hours of care weekly.8

Given the close interaction of family caregivers with the patient, caregivers are ideally suited for promoting adherence to oral oncolytics. Attesting to their critical role, studies have shown that access to a caregiver is associated with increased adherence to medications in noncancer settings, such as in patients with HIV or heart failure; this increased adherence to medications was primarily attributed to the supervision of the drug use.9,10

Family Caregivers Can Help Promote Adherence

Family caregivers can assist patients with a range of administrative and supportive tasks, including bill payment, management of insurance claims, grocery shopping, tracking and administering medications, transporting to and arranging physician visits, and navigating the healthcare system.

The support of family caregivers is invaluable in helping patients adhere to oral oncolytics for multiple myeloma. At the outset, family caregivers can assist patients in confirming the correct dose and administration information for the medication, including whether it should be taken with food or on an empty stomach. Caregivers can then help with the medication and/or reminding patients to take their medication at the scheduled time and dose; they may also supervise when patients are taking medications to ensure that they are taking them as prescribed and to avoid medication errors.

In addition, caregivers can help research the most appropriate and effective adherence tools—such as creating a calendar or a schedule, setting up reminder alerts or alarms on watches or smartphones, or filling up weekly pill organizers—and incorporate lifestyle changes that can potentially promote adherence.

Furthermore, family caregivers can help patients with cancer by dropping off prescriptions, renewing prescription refills, and picking up prescriptions, because not doing so in a timely manner are important causes of medication nonadherence. The IMS Health data suggest that approximately 30% to 50% of prescriptions are not relayed to the pharmacy, 34% to 52% of prescriptions are not picked up from the pharmacy on time, and 80% to 85% of prescriptions are not refilled as prescribed.3 Family caregivers can monitor for needed prescription refills and can contact the healthcare team for a new prescription, or sign up for automatic refills through the pharmacy.

Side effects related to medication use, anxiety, or depression can all contribute to medication nonadherence, and monitoring for these issues is an important task that family caregivers can perform. As previously mentioned, patients may skip, modify, or stop taking their oral oncolytic medications in an effort to avoid side effects. Furthermore, patients may also receive ineffective medication doses if they are experiencing side effects, such as vomiting or diarrhea, that can affect how much medication the body absorbs.

Therefore, it is important that any new symptoms or side effects observed during treatment with oral oncolytics are reported promptly to the healthcare professional, without reducing or stopping the medication so that appropriate supportive care for relief of symptoms may be initiated, while allowing the full benefit of anti–multiple myeloma medication to take effect.

Importance of Caregiver Education

The role of caregivers in fostering or hindering treatment adherence to oral oncolytic therapy is tremendous and can considerably influence treatment outcomes. For example, caregivers may negatively influence medication adherence by recommending that patients reduce their medication dose, skip their medication, or abandon taking their medication altogether because of their concern regarding medication side effects. Such recommendations can place patients at risk, despite the caregivers’ good intentions and hard work, if they do not have the knowledge and skills to perform their responsibilities.

Therefore, education and/or training of family caregivers is essential for appropriately administering medications, recognizing classic and atypical adverse drug effects caregivers may observe in the patient, and facilitating greater adherence to oral oncolytic therapies.

Furthermore, caregivers may need to be properly trained by healthcare professionals in developing critical thinking skills that would enable them to overcome potential challenges related to the management of side effects and medication adherence. A study of patients with HIV showed that adherence to HIV treatment was nearly 4 times greater in patients with family caregiving support compared with patients without caregiving support when using a model that included timely access to medication, knowledge of medication and potential side effects, and the appropriate use of cues or reminders to action (both electronic and/or caregiver prompts).8

When family caregivers are adequately educated and included in the expanded cancer care team, they are well-positioned to improve adherence to oral oncolytic therapies in patients with multiple myeloma.


  1. Cheung WY. Difficult to swallow: issues affecting optimal adherence to oral anticancer agents. Am Soc Clin Oncol Educ Book. 2013:265-270.
  2. World Heath Organization. Adherence to long-term therapies: evidence for action. 2003. Accessed December 11, 2015.
  3. National Association of Chain Drug Stores. Pharmacies: improving health, reducing costs. Revised March 2011. Accessed December 15, 2015.
  4. Benjamin RM. Medication adherence: helping patients take their medicines as directed. Public Health Rep. 2012;127:2-3.
  5. Jimmy B, Jose J. Patient medication adherence: measures in daily practice. Oman Med J. 2011;26:155-159.
  6. Partridge AH, Avorn J, Wang PS, Winer EP. Adherence to therapy with oral antineoplastic agents. J Natl Cancer Inst. 2002;94:652-661.
  7. Streeter SB, Schwartzberg L, Husain N, Johnsrud M. Patient and plan characteristics affecting abandonment of oral oncolytic prescriptions. J Oncol Pract. 2011;7(3 suppl):46s-51s.
  8. 8National Alliance for Caregiving and AARP. Caregiving in the U.S. April 2004. Accessed October 19, 2015.
  9. Fredriksen-Goldsen KI, Shiu C-S, Starks H, et al. “You must take the medications for you and for me”: family caregivers promoting HIV medication adherence in China. AIDS Patient Care STDS. 2011;25:735-741.
  10. Rich MW, Gray DB, Beckham V, et al. Effect of a multidisciplinary intervention on medication compliance in elderly patients with congestive heart failure. Am J Med. 1996;101:270-276.

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Last modified: March 10, 2022

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