Christopher Pirschel

A CANCER DIAGNOSIS COMES with a laundry list of physical and emotional side effects, and a variety of resources can help patients deal with them.

Unfortunately, those resources don’t offer quick fixes for problems including mental fogginess, short-term memory trouble, multitasking difficulties and slower mental acuity compared with before diagnosis. Often referred to as chemo brain, these cognitive changes are a common side effect of many types of cancer treatments — not just chemotherapies, as the term suggests.

Although strategies for improving mental sharpness after cancer treatment already exist, new and more effective techniques are being sought. In a study funded by the Oncology Nursing Society Foundation, one nurse researcher determined that adding a mindfulness aspect to post-treatment exercise can help ease chemo brain.

To explore this avenue, Oncology Nursing Society member Jamie Myers, Ph.D., RN, AOCNS, a research assistant professor at the University of Kansas Medical Center School of Nursing in Kansas City, measured the effectiveness of using qi gong, a mindfulnessbased exercise, to mitigate the effects of chemo brain in patients with breast cancer.

Myers’ study, which is being reviewed pending publication, recruited women with breast cancer who received chemotherapy and finished their treatment at least two months prior to enrollment. Qi gong, a low-intensity exercise, combines physical activity (slow, flowing movement) with mindfulness techniques (deep breathing and meditation). It was selected for study because it can be done standing or sitting and regardless of fitness level.

“Our participants had concerns about their mental abilities and difficulties they were experiencing with memory and multitasking,” Myers said. “We randomized participants to one of three groups that met once a week for eight weeks. The first group met and practiced qi gong, the second engaged in gentle exercise with no mindfulness element, and the third attended a support group tailored to the needs of women with the breast cancer experience.”

Participants rated their own mental abilities using a validated questionnaire, and Myers’ team also tested their cognitive function. “At baseline and a month after the groups ended, we had participants complete a short series of cognitive tests that went along with how they were reporting their own mental abilities,” Myers said. “We wanted to have both subjective and objective results that we could compare pre- and post-study.”

After eight weeks and continued follow-up, Myers’ team noted that, of all three groups, the patients who engaged in qi gong experienced the most improvement in self-reported memory, multitasking and other mental abilities. “We saw significant improvement for the women in the qi gong group,” Myers said. “Also, when we initially assessed for their baseline abilities, we asked them about stress levels, fatigue and sleep habits. The qi gong group reported the biggest reduction of stress levels compared with all other groups.”

Myers and her team recognized the time commitment involved with following a program an hour a week for eight weeks. Some patients left the study as a result, she said, but those who remained were enthusiastic and engaged. Classes in qi gong and other mindfulness-based exercises could be offered online using services such as Skype, according to Myers. However, practicing qi gong is not appropriate for everyone, she said, so patients should consult their health care providers for more information.

“We have to be careful not to overstate the study,” Myers said, “but we were excited to see that our small study indicated that adding a mindfulness component to exercise could enhance the benefits for patients. Mindfulness-based exercise can be added as a piece of a patient’s arsenal, but it depends on the individual patient’s condition.”

With support from the Oncology Nursing Society Foundation and its donors, Myers and many other oncology nurse scientists continue to drive patient-centered research, leading to practice change and improved quality of life for patients with cancer.

“We were thrilled when we heard our grant application was approved,” Myers said. “It’s the only way we could’ve done this work. Whether it’s as researchers conducting the studies, as oncology nurses supporting patients or as patients journeying through a cancer diagnosis, the support the Oncology Nursing Society Foundation provides is critical to laying the groundwork for future studies.”

The ONS Foundation is the only entity that directly supports the projects of oncology nurses like Jamie Myers. For more information about the ONS Foundation and ways to give, visit ONSFoundation.org.

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To ease ‘chemo brain,’ a nurse researcher combined mindfulness with physical exercise.

Presence of Mind: Tips for Combatting Chemo Brain

With every cancer diagnosis comes a detailed treatment plan that usually includes a seemingly endless list of multisyllabic medications. Remembering what to take, and when, can be a challenge for anyone, but evidence shows that it’s especially difficult for adolescents and young adults (AYAs) who have cancer. These patients, ages 15 to 39, are particularly susceptible to missing medications, mainly due to lifestyle issues, and this has been associated with poorer outcomes and the potential for relapse.

A solution might lie in the palms of their hands, according to a team of nurse researchers at Huntsman Cancer Institute at the University of Utah in Salt Lake City. They theorized that a medication-reminder smartphone app would improve adherence rates. 

“Studies of children and adolescents with acute lymphoblastic leukemia indicate that less than 95 percent adherence to their cancerrelated medications is associated with a 2 ½ times increased risk of relapse,” says nurse researcher Lauri Linder, Ph.D., APRN, CPON, an Oncology Nursing Society (ONS) member. “Patients who experience relapses of their disease are then at risk for decreased long-term survival. This age group is at greater risk for poor adherence, and the AYA population’s cancer-related outcomes have not improved at the same rates as younger children.”

AYA patients face unique challenges, according to Linder.“This population is a distinct developmental group. They are gaining independence from their families and are assuming greater responsibility for their own medication adherence,” she says. “Their schedules also tend to be complex — many are attempting to balance work, school, social activities and family life. Complex personal schedules make remembering to take medications more difficult.” Is there an app for that? Linder and her colleagues sought to find out.

TRACKING ADHERENCE THROUGH MEDICATION REMINDERS

The prevalence of AYAs’ smartphone use, coupled with their need for improved medication adherence, presented an opportunity to understand whether  technology could make a difference. With funding from the ONS Foundation, the team reached out to software developers.

“For our study, we used a commercially available app, Dosecast, developed by Montuno Software,” Linder says. “Montuno supported our team by providing participants with a code to allow them to access the Dosecast Pro edition for one year at no cost. They also provided our team with app usage data for each participant.”

After downloading the app, participants entered information, including medications and desired reminders. When it was time for a dose, the app would send a reminder that prompted the patient to select from three options: take now, postpone or skip.

The study results showed that patients who scored highly for adherence at baseline usually continued to take their medications in a timely manner — but with less variation in their schedules, which Linder considers encouraging. Using the app had less impact on those with low baseline adherence, but, according to Linder, a small third subset across both groups showed clearly improved adherence. Most participants reported that they found the app helpful and easy to use and would recommend it to others. 

“Smartphone-based apps are just one resource that addresses one aspect of promoting oral medication adherence,” Linder says. “Reasons for nonadherence are as diverse as our patients themselves. Although forgetfulness is a frequently cited reason for nonadherence, the reasons for forgetfulness vary greatly. Future studies can help us better understand how technology-based interventions, such as smartphone apps, can help in practice.” 

MOVING THE NEEDLE ON PATIENT-CENTERED RESEARCH

Oncology nurse researchers like Linder strive to make advancements in cancer care research that improve experience, outcomes and quality of life for their patients. “The ONS Foundation has a very important role in oncology nursing research,” Linder says. “Having access to funding resources is essential to developing nurse scientist ideas. The funding support that we received from the ONS Foundation was essential to our being able to conduct this study.”

Individuals seeking to support patient-centered cancer research can invest in the work of oncology nurse scientists through the ONS Foundation, which is dedicated to supporting the nurses who care for patients with cancer.

Mobile apps may help teens and young adults stick with their medication schedules, a nurse scientist finds.

Hold the Phone

A CANCER DIAGNOSIS IS one of the most stressful, lifechanging experiences a human being might face. Between countless trips to the infusion center, other medical appointments, mounting health worries, financial strain and concern about the effects on loved ones and caregivers, stress may seem like the one constant of the experience.

Unfortunately, stress affects not just psychological health but also a patient’s overall well-being, potentially worsening symptoms.

Recognizing this risk, John Merriman, Ph.D., RN, a member of the Oncology Nursing Society (ONS), an oncology nurse scientist and assistant professor at New York University Rory Meyers College of Nursing, in New York City, decided to research the way stress affects patients with cancer and how they can use mindfulness-based stress reduction (MBSR) techniques to mitigate that burden.

“MBSR has been around for a few decades now outside of oncology,” Merriman says. “There are courses and sessions you can attend to learn MBSR practices. But mindfulness techniques for most people are simply defined as a way of learning to be present in the moment. It’s about not being lost in your thoughts. Mindfulness has been shown to improve issues related to anxiety and high stress. It allows patients to learn how to take things as they come and not have to react to everything.”

Patients can incorporate a number of these techniques into their daily routines to help mitigate stress. “Yoga can be a great mindfulness technique because it’s not always physical. Most yoga has some aspect of mindfulness of the body and your movements,” Merriman says. “Those not interested in yoga can use very simple forms of meditation, such as sitting meditation, which is something patients can do for 10 minutes at a time. There are plenty of practical ways patients can use MBSR.”

Through rigorous investigation, oncology professionals have quantified the benefits of MBSR. Merriman’s focus is on the body’s response to the techniques and how the strategies can help patients with cancer. His research examines how stress affects the cognitive function of patients with cancer. Typically, patients find it difficult to focus or accomplish tasks, and they feel that they’ve slowed down since they were diagnosed.

“One of the possible reasons for these cognitive changes is stress,” Merriman says. “It could be stress related to the diagnosis itself — psychological stress &mdash; or it could be physical stress related to the cancer and treatment. My research is starting to look at how MBSR techniques can help patients improve their cognitive functioning. We’re looking at brain imaging, alongside self-reporting and neuropsychological assessments, to really understand how MBSR practices impact the brain and overall outcomes for patients.”

Getting his research funded was no easy task. Merriman’s grant proposal underwent intense critical review to ensure that it addressed the requirements needed to receive funding.

For many, this is a daunting, difficult path. To make sure his proposal was ready to submit, Merriman looked to his experienced colleagues and participated in the ONS Foundation Oncology Nurse Scientist Intensive, a program that brings together accomplished nurse scientists to review grant proposals from novice researchers.

Merriman recalls his time at the intensive: “It’s a really unique opportunity to get good, critical feedback on the grant proposal you’re working on. The scientists who gave me feedback were experienced and had good track records of receiving funding themselves, most having been funded through the National Institutes of Health.”

With his colleagues’ help, Merriman revised, adjusted and focused his grant proposal. His project received the funding it needed from the National Institute of Nursing Research, enabling him to pursue his research into the ways MBSR techniques can help patients cope with cognitive changes.

An oncology nurse scientist is studying whether stress can harm cognitive functioning &mdash; and how practicing mindfulness might help.

Mind, Body and Spirit: How Mindfulness Can Help

That’s the phrase Oncology Nursing Society (ONS) member Patricia Jakel, RN, M.N., AOCN, uses to describe her breast cancer diagnosis in the winter of 2016. Jakel, a clinical nurse specialist at UCLA, discovered a lump in her breast on that year’s Super Bowl Sunday and knew she had to have it examined.

“I first found it by looking in the mirror, which, at 55, is not something I do very often,” Jakel jokes. “It was only five months after a negative mammogram. Because of some insurance complications at the time, I could get an MRI (magnetic resonance imaging test) only if a surgeon ordered it. So I had to have a surgeon friend of mine examine me in my office to make sure. After he saw me, he ordered the MRI.”

By chance, the MRI results came back to Jakel during an appointment with her gastroenterologist. She was there for a routine colonoscopy when the doctor mentioned that the MRI results were in. Both being part of the medical community, Jakel and her doctor decided to just read the results together.

“I’d had this appointment for months,” Jakel remembers, “and I’d told my doctor about the lump. She said she’d gone through a similar situation with a scare, and everything had worked out fine.” But that wasn’t the case this time. Jakel recalls watching her doctor’s face change after seeing the results.

“She’s one of those doctors who always has the computer turned to face you while she’s talking. I saw this horrified look on her face,” Jakel remembers. “She said, ‘I’m so sorry to be the one to tell you, but you have cancer.’”

The office started spinning. Jakel remembers being in a daze as she left. By the time she’d made it to the elevator, she was in tears. An older woman said, “Honey, don’t worry. It’s going to get better.” Jakel was stunned. Was she now the one being comforted? She’d woken up that morning on one side of the cancer experience and now found herself on the other.

After beginning treatment, Jakel continued to work. She elected not to disclose her diagnosis to her patients, and her colleagues and hospital administrators worked hard to fulfill her wishes.

She started working with a new patient, Nicole, who’d received a diagnosis of lymphoma around the same time Jakel had learned about her breast cancer. Nicole lived more than 100 miles from the hospital, was a young mother with two kids at home and found herself alone a lot. Jakel visited Nicole often during downtime and between patients.

“I used to go sit with her when I had time,” Jakel remembers. “She had bad mucositis, so I’d bring her Slurpees from 7-Eleven, and we really got to know each other. One day, we started talking about her diagnosis, and she told me, ‘It isn’t fear. It isn’t anxiety. It’s all-out terror.’ I hadn’t told her about me, but we’d have these deep conversations about fear and terror. That’s how we bonded.”

It was from those conversations that Jakel’s perspective changed. She learned about unsupportive social interactions and how often they occur after a cancer diagnosis. Jakel noted many well-meaning comments from her own friends, family and co-workers that missed the mark. She suddenly understood the gap in understanding that can exist between patients and oncology professionals.

“I thought of all the stupid things I’d said to patients over the years,” Jakel says. “Stuff like, ‘Oh, come on, you got this! You’re going to be a fighter.’ In fact, I’d had instances in the past where certain patients would blow up at me over saying things like that, and I never really got it — until now.”

BRINGING THE PATIENT EXPERIENCE INTO PRACTICE

“I’ve learned not to gloss over things,” she adds. “Not to just tell a patient, ‘Honey, don’t worry. Everything’s going to get better.’ It’s about listening, reacting and addressing individual needs in a supportive way that’s right for them.”

Since her diagnosis, Jakel has worked to improve the care she and her colleagues provide, specifically when it comes to social interactions.

As part of the ONS Foundation’s Mara Mogensen Flaherty Memorial Lectureship series, Jakel was given the opportunity to share her story, and dual perspectives, at the 2017 ONS Congress in Denver, a national conference for oncology nurses.

Jakel, now in remission, discussed her experiences and touched on unsupportive social interactions between patients and nurses. She explained ways to close the gaps in understanding and encouraged her colleagues to pursue further research in the area. She wants patients to feel supported and understood from initial diagnosis through treatment and into survivorship.

It was through donations and support from the ONS Foundation that Jakel was able to share her story. The lectureship is possible through contributions to the ONS Foundation, and it provided Jakel with the platform to educate her colleagues. For more information about the ONS Foundation, visit ONSFoundation.org.

The ONS Foundation is the only entity in the world that directly supports the projects of oncology nurses like Patricia Jakel. For more information about the ONS Foundation and ways to give, visit onsfoundation.org.

An oncology nurse learns what it’s like to have cancer &mdash; and uses the experience to improve the way patients are treated.

Christopher Pirschel

Presence of Mind: Tips for Combatting Chemo Brain

Hold the Phone

Mind, Body and Spirit: How Mindfulness Can Help

Nurse Uses Her Cancer to Improve Treatment of Others

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