Making a Connection: Staying in Touch for Better Anticancer Drug Adherence

CUREMedication Adherence & Financial Support Special Issue
Volume 1
Issue 1

By staying in touch, nurses and pharmacists can help patients successfully adhere to oral anticancer treatments that they take at home.

KAREN ROBERTS sticks with her
anticancer regimen by keeping
her medications organized in a
pillbox and taking them at the
same time every day. - PHOTO BY BOB RIVES

KAREN ROBERTS sticks with her anticancer regimen by keeping her medications organized in a pillbox and taking them at the same time every day. - PHOTO BY BOB RIVES

KAREN ROBERTS sticks with her anticancer regimen by keeping her medications organized in a pillbox and taking them at the same time every day. - PHOTO BY BOB RIVES

Every night, before going to bed, Karen Roberts, of Washington, D.C., reaches for her pill container on her night table and takes eight pills prescribed by her doctors. They include Arimidex (anastrozole), an aromatase inhibitor to help keep her breast cancer at bay, and Effexor (venlafaxine), an antidepressant that has proven to be effective against night sweats, a common side effect of Arimidex. This simple routine has kept Roberts, who is in her late 50s, on track, or adherent, with her medication regimen.

Adherence is commonly understood to mean taking medications as prescribed on a regular basis, including following instructions concerning timing and dosage. Although adherence has become a way of life for Roberts, numerous studies have shown that many cancer patients struggle to follow the rules, even as the use of oral, take-at-home anticancer drugs becomes more common. Estimates vary considerably as to the extent of the problem; a comprehensive review of the literature published in the Oncologist in 2016 placed adherence at between 46 and 100 percent. Most of the findings are based on self-reports from patients and caregivers, the use of electronic pill-counting devices, and medical claims data — all approaches that have their inherent flaws. Despite the best efforts of researchers, the bottom line is that it’s extremely difficult to know the precise level of nonadherence.

In some cases, bending the rules even a little bit may be too much. Studies looking at nonadherence to specific treatments have shown that it can affect long-term outcomes. For example, a 2011 study published in the American Journal of Hematology found that patients with chronic myeloid leukemia who did not take Gleevec (imatinib) consistently were less likely to achieve the full benefits of the therapy. In another study, breast cancer survivors who discontinued their adjuvant (post-treatment, or maintenance) hormonal therapy early, compared with those who finished the entire course, showed lower survival rates at 10 years.

Although these findings raise red flags about problems related to nonadherence, it is also clear that oral anticancer medications are here to stay. According to many clinicians, approximately one-third of all cancer patients are now taking oral medications, and more than 25 percent of 400 anticancer drugs currently being investigated are oral agents. The proportion of drugs that are oral is growing, and these run the gamut from chemotherapy to immunotherapy to targeted treatments.

“Oral anticancer medications are the wave of the future,” says Ann O’Mara, Ph.D., R.N., M.P.H., head of palliative care in the Division of Cancer Prevention at the National Cancer Institute. “Patients prefer them, and for good reason. With intravenous chemotherapy, they had to go to the clinic one, two or three days every two, three or four weeks to receive intravenous chemotherapy, a regimen that took over their lives. Now, many patients can take their medication as a pill, in the comfort of their homes.”

The benefits of that change are enormous, but so is the responsibility. It requires patients to become more educated, and clinicians, usually nurses and pharmacists, to become more vigilant in their efforts to show patients how to stay adherent to their treatments, and to monitor them to ensure that they’re doing so. Understanding why patients find adherence difficult can provide clues as to how to turn the situation around.


The failure to take prescribed medications can occur for many reasons, among them side effects and cost. Side effects may take patients by surprise; many are under the mistaken assumption that chemotherapy in pill form will not be as toxic as a similar drug given intravenously. Unfortunately, some are quickly proven wrong.

“The side effects vary from drug to drug, and the more intense they are, the less likely patients are to take their medication,” explains Susan Schneider, Ph.D., R.N., associate professor in the Duke University School of Nursing in Durham, North Carolina. How this will work out for individual patients, however, is far from predictable. “For example, if patients have really bad hot flashes, it becomes very difficult to take their medication,” Schneider says. “But other patients may view those same hot flashes as run-of-the-mill and not have trouble tolerating them. Each patient’s response is subjective and unique.”

Common side effects of oral chemotherapies include: fatigue, nausea, vomiting, hand-foot syndrome, mouth sores, skin rashes, low blood counts, hair loss, nail changes and flu-like symptoms.

Sandra Spoelstra, Ph.D., R.N., associate dean of research at the Medical School of Nursing at Grand Valley State University, in Grand Rapids, Michigan, says that problems related to side effects are further exacerbated when patients are taking multiple drugs for other conditions. “Drug interactions between medications that patients take for high blood pressure, diabetes or other problems can affect how well patients tolerate oral anticancer agents,” explains Spoelstra. “Ideally, drug profiles should be run on each patient to uncover issues with drug interactions, but this is easier said than done.”

The reason that can be difficult is that patients don’t always have at their fingertips a list of all the drugs they’re taking, and there may not be one single doctor who has a record of all that.

Cost, too, is another huge problem affecting adherence. “When the medication is $2,000 a month or more, patients (sometimes) take them creatively,” says Schneider. “They take half a pill instead of a whole pill so they last longer and don’t have to be refilled as quickly.” Other cost-saving strategies, adds O’Mara, include taking the pill every other day or not renewing the prescriptions on time. All of these forms of nonadherence can have an impact on a patient’s health.

While there are no simple solutions to these problems, lessons from the infusion clinic illustrate what is missing from this picture. “Back in the day, when patients were in the clinic receiving their infusions, the nurses would come around and talk to them, asking how they were managing and tolerating their treatment,” says Schneider. “They would offer tips on how to handle side effects. That support made a tremendous difference.”

In this evolving landscape, where reliance on oral medications is increasing exponentially, several interventions have been developed to duplicate the kind of one-on-one support once commonplace in the clinic. Many show promise as a way to improve adherence rates.


Traditionally, nurses and nurse practitioners have served as the points of contact for patients during treatment, and many of these new models follow that approach. The thinking behind these interventions is that bringing back the human touch, either by phone or online, provides support that can change the behaviors of patients and their families.

Schneider conducted a small intervention for 45 patients new to oral anticancer drugs to determine if a personalized adherence plan made a difference. All patients received weekly phone calls from nurse practitioners during the first month of therapy, and then bimonthly calls for six months or until they had completed their medication. Patients in the intervention group were compared with those in the control, who strictly received standard chemotherapy education. The unique feature of the intervention was that it wasn’t one-size-fits-all; instead, the approach was tailored to the needs of the patient. “We had one patient who was having trouble remembering when to take her medication,” recalls Schneider. “So the nurse practitioner set up an alarm system on her cell phone, alerting her to when it was time to take her pill. Another woman told us that she was having trouble remembering to take her evening pill. It just so happened that the timing coincided with the 6 o’clock news, which she always watched. Putting the pill bottle by the television took care of the problem.” The study’s findings, published in 2014 in the Journal of the Advanced Practitioner in Oncology, showed that at two and four months, adherence rates were better for the intervention group than for the control. “The study illustrates the importance of having nurses available to help patients make the transition to taking oral medications,” notes Schneider. “We help them figure out how to incorporate taking medications into daily life.”

A small practice in Michigan, part of the Michigan Oncology Quality Consortium, also found that education and follow-up phone calls made a difference in adherence. “By providing education up front and following up with phone calls, we found that patients were more adherent,” says Tallat Mahmood, M.D., an oncologist in the practice. “We also had the medication delivered to our pharmacy, so we knew when the patient came to pick it up. These strategies have had some impact.”


Text messaging is not as personal as follow-up phone calls, but it has shown potential as an effective reminder tool. Spoelstra has conducted a couple of different studies testing the feasibility of using daily automated text messages, along with weekly messages asking about symptoms, to promote adherence among patients new to oral cancer medication. The larger of the two studies also tested whether recruiting patients from different venues affected outcomes. She and her team enrolled 121 patients from a large national specialty pharmacy, where patients purchase medication, and 128 from community cancer clinics. Interestingly, Spoelstra and her team found that they were able to recruit a higher percentage of African-Americans from the specialty pharmacy. In addition, drawing from two different types of sites resulted in a wide representation of cancer types: more than 20 different cancers, with 28 anticancer medications prescribed.

The study found a high interest in text message reminders, especially among patients recruited from the specialty pharmacy. The reason may be that more people in this group owned cell phones and used text messaging more frequently, so they were already comfortable with this mode of communication. The downside to this option, however, is cost. It may be difficult to determine who will pay for a text messaging platform, Spoelstra says, and who will be responsible for managing it on a daily basis. Another intervention has taken advantage of the expertise of pharmacists to deliver high-quality patient education and support. The Oncology Specialty Pharmacy Program, part of the University of California Davis Comprehensive Cancer Center, works closely with patients to inform them about their medications and answer questions about side effects. The program even takes on the responsibility of sending patients their medications so that they never have to worry about running out. In addition, a collaborative practice agreement with the Division of Hematology/Oncology is in place, allowing pharmacists to write prescriptions for medications to address side effects.

Lead pharmacist Iris Zhao, Pharm.D., B.C.P.S., runs the program, which started as a small pilot in 2013. She and two assistants work closely with their patients — now numbering 600 — beginning with an initial education session. Monthly follow-up calls give patients an opportunity to discuss side effects and to make sure they are current with their supplies of medications. “Many patients are afraid to call, especially to discuss side effects,” says Zhao. “We remove that obstacle by initiating the calls ourselves. Usually, we can come up with strategies to address their problems. For example, we found that freezing a marshmallow and cutting off small pieces to wrap around pills really helps with mouth sores.”

In the same vein, an ongoing phase 2 study has found that a steroid mouthwash can markedly reduce the rate of occurrence of mouth sores in patients who are being treated with Afinitor (everolimus). An investigator on the study says the mouthwash is ready to integrate into practice, but patients may not be aware that it exists, and may discontinue taking their medication without realizing that there is a probable solution. Through follow-up programs, medical professionals can make them aware of such strategies to reduce side effects.

The program at UC Davis also provides another much-needed service: finding payment sources to alleviate the financial burden of treatment. “Drugs can cost as much as $15,000 a month,” says Zhao. “We don’t want patients stressing about money, so we find grants or go directly to the manufacturer for assistance. Organizations like the Patient Access Network Foundation can offer between $4,000 and $15,000 a year.”

JACQUELYN CONWAY appreciated the personal
attention she got from the staff of a specialty
pharmacy program as she worked through
problems with her anticancer medications. - PHOTO BY KELLY BARR

JACQUELYN CONWAY appreciated the personal attention she got from the staff of a specialty pharmacy program as she worked through problems with her anticancer medications. - PHOTO BY KELLY BARR

JACQUELYN CONWAY appreciated the personal attention she got from the staff of a specialty pharmacy program as she worked through problems with her anticancer medications. - PHOTO BY KELLY BARR

Jacquelyn Conway, 52, a breast cancer survivor who lives near Sacramento, is a participant in the specialty pharmacy program and can attest to the personalized attention she receives. “Iris and her team do more than dispense meds,” says Conway. “They take care of the whole patient at a challenging time in their lives.”

Conway should know. She has had her own issues with some of the medications prescribed following her treatment for breast cancer in 2012. She was first prescribed tamoxifen, which she tolerated well, but following menopause, her doctors switched her to an aromatase inhibitor. It was then that she encountered problems. Femara (letrozole) caused swelling, gastrointestinal issues and joint pain. Her doctors switched her to Aromasin (exemestane), which caused severe headaches. She is now on Arimidex, which is working out. Through it all, Zhao and her team have been there. “They are an amazing support system. Without them, it would have been a lot harder to remain compliant with my medication,” says Conway.

Jan Swaving, who has metastatic breast cancer, also sees the pharmacy program as essential to her care. She has been fortunate not to experience side effects from the targeted therapy (Ibrance [palbociclib]) she takes to control the spread of her hormone receptor-positive breast cancer, in combination with injections of the hormone therapy Faslodex (fulvestrant), which she receives at the clinic. “Jan has not had the typical side effects of low white blood counts and fatigue that many patients experience,” notes Zhao. “She is a really positive person who exercises regularly and takes good care of herself.”

But Swaving, 74, who also lives outside of Sacramento, has needed Zhao’s help in finding funding sources for her $15,000 a month bill for her medications. “We never saw a bill,” says Swaving. “Between grants and the manufacturer, they figured it out. We never had to worry.”

These and other special touches have earned the specialty pharmacy program state recognition. It received the 2016 California Society of Health System Pharmacist’s Innovative Pharmacy Practice Award. “With the growing number of oral agents and amount of usage, there is a need for support that the nursing staff doesn’t always have the time to provide,” says Zhao. “This is fast becoming a huge area for pharmacists.”

In the final analysis, however, the real issue is ensuring that patients have access to a trustworthy partner — a nurse, a pharmacist or a physician — to help them take their oral anticancer medications properly. “People have to truly understand what they need to do and why they need to do it,” explains Spoelstra. “Follow-up phone calls are really helpful as patients strive to change their behavior and make a routine out of taking their medications.”

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