For Chemotherapy Patients, New Program Eases Stress, Increases Understanding

Chemo written on a calendar

When too much electricity begins to flow through electrical wires, a circuit breaker cuts off the power to stop the overload and prevent a fire. Sometimes our brains behave like that when they’re overloaded. Just ask any cancer patient who has been bombarded with information before starting chemotherapy.

“First they’re being told they need chemotherapy, and for someone who’s never been treated with chemotherapy before, the whole concept is exceedingly scary,” says Stephen Edge, MD, FACS, FASCO, Vice President, Healthcare Outcomes and Policy at Roswell Park.

“Their minds are numb already, their head is spinning, and then you say, ‘OK, now I’m going to have you sit down with our pharmacist, and the pharmacist is going to spend the next hour detailing all the side effects and all the things you need to do.’

“And their head is screaming, ‘I’m terrified! Get me out of here!’”

Christina Matthews, PharmD, BCOP, has seen the result in her role as a Clinical Pharmacist-Specialist in the Breast Clinic at Roswell Park. “A lot of times when patients see us, they’ve already had a long day,” she says. “They might have had other appointments. They might have had scans. They might have had a long drive to get here.

“And I’m the caboose — I’m at the end of their appointments. By the time I walk in there with all these handouts about chemotherapy, they have a deer-in-the-headlights look and their brain’s almost unplugged. You could go back and ask them a couple of days later, ‘Hey, did you talk with the pharmacist?’ And they might say, ‘No, I didn’t.’

“But I spent 45 minutes with them.”

Patients Help Shape a New Pathway

Roswell Park's Patient Advisory Board
Roswell Park's Patient and Family Advisory Council: Back row, l. to r.: Richard Satterwhite (Coordinator/Facilitator), Christine Nielsen, Courtney Mogavero, Glenn Ferguson; front row, l. to r.: Mariana Militello, Christine Porto, James Croft, Mary Loliger. Not shown: Kara Eaton, MA (Executive Director, Patient/Family Experience), Tomicka Wagstaff, Ann Lupo, Kevin Hays.

Information burnout can have serious consequences. A patient who doesn’t understand when to call the clinic about a fever — which can signal an infection — may wait too long and wind up in an emergency room. A patient who doesn’t remember the instructions about anti-nausea medications may feel too ill to eat properly.

Roswell Park’s new Chemotherapy Education Pathway is designed to prevent those things from happening, both by easing the stress of chemotherapy education and making the teaching process more effective. The program has already been introduced in the Breast, Thoracic, Lymphoma, Myeloma, Sarcoma, and Head and Neck centers, and is on track to begin in all the other centers by the end of the year.

It came about as a result of comments submitted by Roswell Park patients who responded to an annual patient satisfaction survey conducted by Press Ganey. “There are two questions related to chemotherapy — specifically, chemotherapy education, about patients knowing what to expect,” explains Grazyna Riebandt, PharmD, BCOP, Roswell Park’s Clinical Pharmacy Service Director. “We saw that patients were not fully prepared for understanding the side effects and how to manage them.”

Creating a better process meant bringing together many different people, including Roswell Park physicians, pharmacists, nurses, patient educators and members of the Patient and Family Advisory Council (PFAC), whose members advise the hospital administration about programs and policies.

“A number of Council members have gone through chemotherapy,” says Mishellene McKinney, MHA, RN, OCN, Director of Clinical Pathways, who served as implementation facilitator of the new program. “Some have had multiple cancer types and gone through multiple courses of chemotherapy. They were able to give us a lot of feedback on what their experience was like.

“What we heard overwhelmingly was that there is too much information all at once on the initial consult day. Most of them didn’t remember it, or remembered very little of it. And the literature says the exact same thing: Patients remember less than half of what’s presented to them at a particular consult, and the more information you give them, the less they will remember.

“Our patients also told us it would be helpful to have their chemotherapy education on another day when they could focus solely on the education, preferably with someone else, a caregiver, with them.”

“Some people objected to that,” notes Edge. “They said, ‘That’s so inconvenient for the patient! You can’t make them come back another day.’ Yes, it’s a little inconvenient, but it’s incredibly valuable for them to come back on a different day.”

In fact, chemotherapy education now takes place over the phone or by video chat for many patients. Riebandt adds that clinics that schedule in-person education “always try to combine the education visit with another visit at Roswell Park so patients do not have to come in just for chemotherapy education.”

One-on-One Education

Before starting chemotherapy, patients are encouraged to visit Roswell Park’s Resource Center for Patients and Families for a brief one-on-one orientation and to pick up handouts about chemotherapy. They can request specific information about such topics as fertility, sexuality and intimacy, nutrition, clinical trials and the Cancer Coach program.

They can take the materials home and read them prior to the education session with their clinic pharmacist, which will last anywhere from 30 minutes to an hour or more, one on one. Because they have time to review the printed information in advance, “my patients are so much better prepared for that conversation,” Matthews says. “They have a list of questions ready. They can have their medication bottles in front of them and pick them up and read the instructions.

“I also like to encourage them to have a companion with them, whether it’s a spouse, a parent, a sibling, or even a couple of people, so they can all listen in together. Having their support network listening in is so important.”

‘Tailored Toward Me’

The new program relies on a technique called “Teach-Back,” in which the pharmacist explains something and later asks the patient to repeat it, to ensure that nothing has been misunderstood. That’s critical, because — for example — a patient who is told to call the clinic if they have a fever of 100.4 degrees might interpret it as 104 degrees.

“We know that medical jargon is very confusing to patients,” says McKinney. “The things we changed were changed on the basis of science: making sure we had clear, easy-to-read materials, that we used Teach-Back, and having the education visits on a separate day. We relied on implementation science, which is a field of study focusing on how to make research findings work in the real world by engaging patients, caregivers and clinical staff in the process. We enlisted patients, pharmacists, education specialists, doctors, nurses and analysts to help us design the content and workflow in a way that was meaningful to them.

“We also talked to other cancer centers to find out what they were doing. A lot of them are doing group sessions, but when we talked to our patients, they said, ‘I’d really like to have it tailored toward me.’ That’s what we were already doing, so we continued with that. I think that’s what makes it special.”

Empowering Patients

Matthews recalls that after she gave a lecture at the University at Buffalo’s School of Pharmacy, the students asked her, “When you’re done talking with patients and you’ve told them about all the chemotherapy side effects, are they scared? Do they ever say, ‘No, I’m not going to get chemo?’”

She told them that explaining the side effects “helps empower our patients. If we let patients go into chemo basically blind, they’re going to have side effects and not know what to do, not know when to call us, not know if this is normal. We give them information about how we plan to prevent side effects and how they can manage and treat some side effects at home, and we make sure they know when they need to call us.

“They’re so much better armed, and they can prepare themselves and their loved ones.”

This is the first of two articles about Roswell Park’s new Chemotherapy Education Pathway. Watch for part 2 in the October issue of the patient newsletter, when a Roswell Park patient will share her experience with the program.