Caregiver support is essential for patients taking oral anticancer therapies.
The medication reminder system Kathryn Kilroy developed for her mother involves placing a dose of pills into small Dixie cups, each cup atop a Post-it note clearly indicating what the pill is for and what time it must be taken. Next to the daily lineup of cups, she leaves a spreadsheet detailing instructions for each dose. The cups are a visual cue, so her mom can see when to take each dose and know whether she actually took it.
Kilroy, who works full-time for a Bostonarea biotech start-up, also calls home around 11 a.m. to ask how she is feeling.
If side effects, such as nausea or constipation, are problematic, Kilroy suggests antidote medications—also laid out and labeled on Post-it notes.
Every two weeks, the regimen changes, so Kilroy creates a new spreadsheet as a reference. She developed this system in the two years since her mom, now 75, received a diagnosis of cancer in her small intestine and was sent home with multiple prescriptions.
“I realized early on that we needed something to organize daily medications because Mom would ask, ‘Did I take that already?’” Kilroy says.
That’s a question that concerns healthcare professionals, too. They know that sending patients home with a laundry list of medications offers no assurance that those medications will be taken properly. The stakes for poor adherence can be dire, particularly as more patients are asked to follow oral anticancer therapy regimens on their own.
As pharmaceutical science advances, the medical profession is racing to better understand why relatively few patients, only about one in five, take oral anticancer drugs as prescribed. It’s partly the complexity of certain drug regimens. Some patients are asked to take multiple pills a day: at bedtime, mealtime, on an empty stomach or several hours apart. Keeping that schedule can be confusing for anyone. For a patient who is ill or fatigued, it can be daunting.
One patient took an oral anticancer pill every day until she finished the bottle, recalls Eric Cohen, an oncology nurse and program manager of patient and family education at Life with Cancer, a service of Inova Health System in northern Virginia. Unfortunately, the prescribed regimen to treat her brain cancer required five days of pills and then three weeks off. “If you take it steadily throughout the month, that’s a serious problem,” he says.
Another patient with lung cancer stopped taking her pills completely after she developed a rash, a fairly common side effect. She didn’t tell anyone, including her adult daughter and caregiver, Cohen says.
Those cases represent just a couple of ways that therapeutic results can be compromised. In the absence of proven strategies to ensure that cancer patients will take their oral anticancer therapy correctly outside a clinical setting, “everybody is flying by the seat of their pants,” Cohen says. At a minimum, he recommends using pillboxes and a treatment organizer.
I realized early on that we needed something to organize daily medications because Mom would ask, ‘Did I take that already?’
In the Stinnett household in Fort Worth, Texas, John Stinnett is practiced at administering medication to his wife, Candice, who has had three occurrences of non- Hodgkin lymphoma. Each time, he approached doling out medication like the organized business analyst that he is. “We used a weeklong pillbox and filled five of the seven holders for a single day,” he says. He created a two-column checklist, indicating when each medication was to be taken, reviewed the checklist while filling the pillbox every morning and checked off pills as she took them. “Eventually you memorize the list,” he says. “After three months, it’s routine.”
Despite the couple’s best efforts, she occasionally missed a pill. Even the doctor expected it. “Every lapse is a possible immune system complication, but you’re going to have lapses,” Stinnett recalls the doctor saying.
The issue of adherence was “surprisingly ignored for a long time” because physicians assumed patients would do what was good for them, says Carolyn Gotay, a professor at the University of British Columbia (UBC) and chairwoman of the Canadian Cancer Society- UBC Cancer Prevention Centre in Vancouver, British Columbia. She has reviewed several studies on adherence rates in long-term hormone therapy and found that adherence rates are less than optimal and fall off over time. Increasingly, medical professionals recognize that good intentions can fail and more research is needed to identify best practices to improve adherence.
Many approaches are possible, such as varying the intensity and frequency of patient education, better counseling by health professionals or pharmacists, simpler written instructions, follow-up phone calls, online assistance, cognitive-behavioral therapy consisting of feedback, reinforcement and rewards, text or phone message alerts, and special pill packaging that monitors activity.
Caregivers at home can help by reminding patients who may be suffering side effects or resisting medication to focus on the ultimate goal and encourage them to talk with other patients—online or in a group—about their experiences, so they don’t feel alone, Gotay says. Caregivers also can remind patients to tell their physicians and nurses about side effects in case other treatment options are available.
“It’s more effective to help patients problem-solve, rather than try to solve problems for them,” Gotay says.
Even patients who think they are adherent often misjudge. Around two dozen cancer patients whose medication was monitored by a microelectronic device (an “intelligent bottle”) were asked to self-report on their tamoxifen use, and the women overestimated the degree to which they adhered to their oral drug regimen by about 30 percent.
Often it’s a case of “unintentional nonadherence,” says Pamela Ginex, an oncology nurse researcher at Memorial Sloan-Kettering Cancer Center in New York. Patients think they are taking their cancer therapy correctly, and they are not. In an ongoing study, Ginex is examining risk factors that may predict which patients will likely fail to follow an oral anticancer regimen. She and her team will examine patient perceptions of medications in general and inquire about the education they received concerning their medications and possible side effects. Later, the team will interview the same patients to identify methods that worked best to improve adherence.
There’s no single solution for everyone. A reminder alert by phone does not assure a nurse that the patient took the pills. Electronic pill caps can indicate whether the bottle was opened, but there’s no way to know whether a patient took the right dose, Ginex says.
“We have to know what life is like for patients who go home with their cancer treatment and what would put them at risk [of nonadherence],” she says. “Once we know, we need to work on interventions that will help our patients.”
In the meantime, caregivers can help patients by asking the oncology staff for a calendar or schedule indicating what dose and when to start and stop medications. Ginex knows of a patient who leaves a crystal glass by the sink with her oral chemotherapy in it as a reminder to take her pills. Tech-savvy patients can set a cellphone alert, and almost anyone can learn to set the timer on the microwave if pills must be taken with food or on an empty stomach. A call from a family member or friend can be helpful and encouraging. Above all, talk to the patient, and ask what would be most helpful in the way of support.
“Have a conversation, so you’re not overstepping,” Ginex says.