Hollywood, FL—Adherence to medications is critical for effective cancer treatment. Oncologists must understand the reasons for nonadherence and help patients to keep taking their medications, said Lillie D. Shockney, RN, BS, MAS, Associate Professor, Johns Hopkins University School of Medicine and School of Nursing, Baltimore, at the 3rd Annual Conference of the Association for Value-Based Cancer Care.
“As medical providers, we need to ensure that the correct drug is given at the right dosage, at the proper time, on a specific schedule, under the appropriate conditions, and following the right precautions,” Ms Shockney said, but this “can be very overwhelming for patients.”
For patients with cancer, nonadherence can seriously affect outcomes, shortening the time to relapse, reducing survival time, and increasing physician visits and hospitalizations.
A 21-year breast cancer survivor herself, and currently a caregiver of a parent with metastatic cancer, Ms Shockney focused on the patient–provider perspective.
When the Patient Is in the Driver’s Seat
The increasing use of oral oncolytics would appear to make treatment easier and less burdensome for patients; however, “the catch” is that patients are more apt to take oral drugs incorrectly, and these drugs are less frequently monitored by providers, unlike conventional intravenous chemotherapy, where the provider controls the process, Ms Shockney noted.
When the patient is told, “I’m not going to see you for 6 months,” this is often interpreted as, “I don’t need to see you for 6 months,” regardless of any problems with the drug, she said. Rather, oncology staff should stay in touch with the patient, to ensure that the patient has filled the prescription and the side effects are manageable.
It is crucial to explain to patients and their families why taking the drug properly is so important. “We need to emphasize the purpose of the drug, and why it may be, in some cases, the most important treatment that the patient is going to be receiving,” she said. “Without this knowledge, we are risking nonadherence.”
Patients need to be given explicit instructions about when to take the medicine, and the potential for specific interactions with other drugs or compounds (Table).
Types of Nonadherence and Common Excuses
There are many reasons for and types of nonadherence, including the complexity of treatment instructions, unbearable side effects, lack of understanding the drug’s purpose, treatment fatigue, cost (ie, high copayments), and simple forgetfulness. Nonadherence can happen right away—failing to fill the prescription from the start—or over time, as patients adjust to their illness or tire of the side effects (Table).
“When patients are diagnosed with cancer, initially they are so petrified that they’ll do anything that we tell them to do,” Ms Shockney said. “If I said, ‘You’re going to need a mastectomy,’ a patient might answer, ‘You can take my arm off, too. It’s okay.’ They are frightened they’re going to die. They’ve got that foxhole religion.”
“When the acute treatment is done and we move into chronic care, that foxhole religion has worn off a bit. Over time, it will wear off even more, and patients will start questioning, ‘Do I really need to take these medicines? I don’t think this cancer’s going to come back,’” and they may discontinue the regimen too soon, she said.
Personal Health Beliefs Drive Behavior
Each patient has personal health beliefs, based on various sources. Some patients develop their own theories that may negatively affect adherence, such as a fear of becoming dependent on or addicted to medication. Others may take pride in not taking any medication at all. The occasional patient may even share medication with others, believing that “if it helped me, it will also, in some way, be good for my spouse,” Ms Shockney said.
Cultural and ethnic reasons can underlie the failure to follow through with medication, as can psychological characteristics and personal values and goals.
One of the most common, and understandable, reasons for nonadherence is related to the toxicity of treatment. Referring to some 200 e-mails she receives daily through the Johns Hopkins Breast Center website, Ms Shockney said that patients first write to ask her which of several chemotherapy options will offer the best chance of survival, but later in the treatment journey, patients ask instead which regimens are associated with the least side effects.
“We need to help patients focus on why are they taking this drug, as well as provide them some solutions to the side effects,” Ms Shockney said.
Nonadherence Disguised as “Treatment Failure”
“Treatment failure” is often not because of efficacy of a given drug but because the patient is simply not taking the drug. Clinicians often fail to consider this possibility, she said.
“When test results suggest a drug is not working, we will assume this drug has failed, and the patient needs a prescription for a different drug. But it may not have anything to do with how well the drug works; rather, it may have to do with whether the patient is taking the medication as prescribed,” Ms Shockney said.
Through a “thoughtful and nonthreatening” conversation with the patient whose disease is progressing, the clinician may uncover nonadherence. “It was not the drug that failed the patient, but it’s that we failed to help the patient find solutions for dealing with side effects or financial issues.”
Ms Shockney advised providers to make sure that patients are taking their medications as prescribed, using the following interventions:
- “Give your patient permission to describe the barriers that prevent him or her from taking the medication as prescribed.” This should occur as part of a “partnership” and not a dictatorial relationship on the part of the provider; “maintaining their medication schedule as prescribed should be a shared goal, and patients should understand its importance”
- Providers, perhaps nurses, should work with the patient to develop a reliable method of remembering to take their medications; nurses or navigators may be the staff most able to invest the time and “due diligence” one-on-one with the patient and family
- Caregivers, including family members, should be included in these conversations to ensure that they also understand the importance of keeping with treatment; for example, a man whose wife is experiencing low libido, vaginal dryness, night sweats, and hot flashes may suggest she stop the cancer-related hormonal therapy, because “he wants their life back on track….That partner should be present for that consultation when you are handing the prescription over. You tell them that they are going to be taking this medicine together, and you talk about some of the solutions for the side effects that can be predicted”
- Pill organizers can assist patients with adherence, as can smartphone apps that can provide reminders
- Patient assistance programs can help find solutions to financial issues
- Problems related to the cost of care need to be brought to light at the start of treatment to avoid treatment gaps because of inability to pay.
Quality of Life and Adherence
Oncologists must appreciate the impact of cancer treatment on the patient’s quality of life. “I personally did my own 5-year tour of duty to prevent my cancer from recurring, and I found it hard, even though I clearly understood why it was important,” Ms Shockney said.
If the quality-of-life issue relates to sexuality and intimacy, patients will seldom broach this topic with their providers. “It behooves you to have someone available who is comfortable discussing this with these patients. I’ve had discussions I never thought I would have. Patients and spouses value it.”