To improve adherence, patients with cancer must recognize barriers.
The medical community increasingly recognizes that many patients aren’t perfect pill-takers. And the solution may be as simple as improving communication. “When I formulate the treatment plan, I really involve the patient,” says Lidia Schapira, an oncologist at Massachusetts General Hospital in Boston. “I ask the patient to let me know of any reluctance or hesitation or concerns, and we talk about them.”
To make adherence easier, patients may want to discuss questions such as these with their medical team:
How will the patient get the pills?
Is there anything special to do before the prescription is filled? Are there forms to fill out? Authorizations to request from an insurance provider? Do only specific pharmacies carry the medication? If the medication is ordered online, does it need special handling in the mail? Is cost an issue?
What if the patient has trouble swallowing pills?
Uneasy swallowers might assume they can crush an oral anticancer therapy pill. “It’s never a good idea to crush a pill unless that’s been studied,” says Donna Berry, a nurse scientist at the Dana-Farber Cancer Institute in Boston. The patient might inhale dust from chemotherapy agents or damage the time-release mechanism.
If the obstacle is the pill’s size, the doctor might be able to reformulate the prescription so several small pills equal one big one. Techniques that kids use for pills come in handy. “You’re going to laugh at this,” Berry says, “but put the pill in pudding or ice cream, so it slides down easy.”
Some patients may not have realized how difficult it would be to swallow the pill. At Dana-Farber, a nurse calls a patient 72 hours after the regimen begins to determine, among other things, whether the pill is easy to take—and if not, if there might be other options.
How can patients remember to take the pill?
The idea of a daily chemotherapy pill “has to be something that sticks in your head,” says medical researcher Joyce Cramer, formerly of Yale University. “And only you can put [that idea] there.” Patients should tell themselves that every day, for the next 30 or 60 or 90 days, or perhaps the indefinite future if they have metastatic disease, they must take a pill. In studies, Cramer has found the power of a mental bookmark really works, creating “a lingering feeling that you’re supposed to be doing something.” Then they need to connect that thought to their daily habits.
I have made it part of my nighttime regimen: Wash your face, brush your teeth, take your pill. I picked a time when I knew I wouldn’t forget it, and it’s worked for me.
The doctor or pharmacist should state how and when the pill should be taken, says Frank Federico, a registered pharmacist and executive director at the nonprofit Institute for Healthcare Improvement in Cambridge, Mass. Then the patient should be asked to explain his or her personal plan: “I’ll take the pill every night at 10 p.m., as part of my getting-ready-for-bed routine.” That’s what works for Barbara Errickson, 64, of Brigantine, N.J., who takes a daily dose of Tarceva (erlotinib) for stage 4 lung cancer. “I have made it part of my nighttime regimen: Wash your face, brush your teeth, take your pill. I picked a time when I knew I wouldn’t forget it, and it’s worked for me.”
What if patients are still afraid they’ll forget?
Then they’ll need to set up reminders. Philippe Johnson, 33, was prescribed etoposide to fight his stage 2b testicular cancer in 2007. The meds had to be refrigerated, thus, the South Carolina resident kept the pill container in the fridge’s butter drawer, so it stared him in the face every morning when he went for the milk.
Lillian Shockney, a registered nurse and administrative director of the Johns Hopkins Avon Foundation Breast Center in Baltimore—and a two-time breast cancer survivor—is also a refrigerator advocate. For her own meds, she puts a note on the refrigerator door: “Don’t forget to take your pills.”
But even a refrigerator note may eventually become like wallpaper. For patients who need a daily jolt, calendars and electronic reminders are an option.
What if a dose is missed?
That’s a question patients should ask when they get the prescription.
“Find out upfront whether you should try to make it up,” Berry says. The answer may be that a double dose is too much. “But that’s something that needs to be individualized per patient.”
What about side effects?
Doctors should tell patients what to expect—and patients should tell their doctor what they experience (keeping a log helps), so management strategies can be found. Otherwise, side effects might make patients want to stop taking the pill.