Many patients with cancer who receive systemic therapy experience cancer treatment-related cognitive impairment, commonly referred to as "chemo brain." Chemo brain is characterized by the inability to remember certain things and having trouble finishing tasks or learning new skills. For most patients, these effects are short-term; however, other patients may have long-term mental changes which negatively impact their everyday life. At the Oncology Nursing Society 43rd Annual Congress in Washington, DC, i3 Health spoke with Patricia A. Gibbons, PhD, RN, AOCN, from Memorial Sloan Kettering Cancer Center, about her research on the experiences of patients with chemo brain and the role of oncology nurses in educating patients about this side effect of cancer therapy.
What led you to look into chemo brain as an important issue for oncology nurses to be aware of?
Patricia A. Gibbons, PhD, RN, AOCN: In my clinical experience as an Advanced Practice Nurse (APN) in a private oncology setting, women with breast cancer who have had chemotherapy treatment informally complained of symptoms characteristic of chemo brain to oncology nurses. The nurses reported that breast cancer patients receiving chemotherapy complained about being forgetful, having difficulty concentrating, and a poor attention span.
Many patients use the term "chemo brain" to describe these symptoms and are concerned whether these symptoms are likely to be long-term consequences that may become permanent. Some patients are so worried about the potential long-term symptoms of chemo brain that they question the benefit of their chemotherapy, despite the significantly improved cure rate.
I have observed that patients are frustrated and concerned about the loss of cognitive abilities that most of us take for granted. Health care professionals are just starting to recognize this symptom as a side effect of chemotherapy, but they currently do not know how to evaluate it or treat it.
How common would you say it is in the chemotherapy setting?
Dr. Gibbons: According to a 2010 study by Pullens, De Vries & Roukema, chemo brain has been reported in up to 90% of women undergoing chemotherapy for breast cancer.
Could you describe the methodology used for your research?
Dr. Gibbons: Phenomenology was used to describe and explore the lived experience of chemo brain for women 50 years old and younger with early stage breast cancer. There were six participants with early stage breast cancer who were currently experiencing or had symptoms of self-reported chemo brain six months after completing chemotherapy. They were interviewed in order to get a sense of what chemo brain means to them and the impact that it had on their lives. I repeated the interview within 2 weeks, just to make sure that everything in the study was in fact what they had told me initially.
My particular study looked at what these patients were experiencing and some of the tools that they told me that they used to manage chemo brain. They used post-it notes and smartphones as reminders. People helped them to remember to take their pills. They relied on a lot of people. They put little notes up in common places like the refrigerator or the bathroom mirror. They put alarms on their phones. Those were the kinds of things that they used to help them.
How can oncology nurses better educate their patients about chemo brain?
Dr. Gibbons: Oncology nurses really need to tell patients about chemo brain as part of their initial teaching. When I worked in the private setting, we sat down with the patients and told them about the side effects and symptoms that they would experience with all of the different chemotherapies, but we didn't teach them about side effects like chemo brain, and I think that's something that we need to talk about early on. We need to give patients a heads up and explain that this could happen and give them some information. One of the things that the women in my study said they would have appreciated was knowing about it in advance. It was sort of a shock to them.
How long after treatment does it typically take for chemo brain symptoms to present?
Dr. Gibbons: For some of these women, it happened very quickly after 1 treatment. For some women, it was after 2 treatments, for others it was after 3. It was already happening after that very first treatment for some of them and it became progressively worse.
What treatment options are available for chemo brain?
Dr. Gibbons: We're not really there with treatment yet. What we can do for the long-term effects is yet to be determined. Anecdotally, some people have used B12 and different amino acids, but we are still looking at what can be done.
What is your key take-home message for oncology nurses?
Dr. Gibbons: Chemo brain is an important phenomenon for the discipline of nursing. Most oncology nurses have heard something about chemo brain, but they do not really know what it is or how to treat it. In discussing symptom management, nurses and doctors may briefly mention chemo brain to patients, but they cannot completely explain this concept, much less offer interventions for these particular symptoms, as they can for other side effects of chemotherapy. Health care practitioners can offer antiemetics for nausea and vomiting, laxatives and stool softeners for constipation, growth factors for anemia, neutropenia, and thrombocytopenia, and pain medication for pain, but there are currently no evidence-based interventions substantiated by research used to treat chemo brain, and many of the neuropsychological testing that is used to confirm patient reports of chemo brain is not representative of the individual's home and work environment.
Because of the great strides made in the diagnosis and treatment of cancer in general, cancer has become a chronic condition. Patients live longer with their diagnoses, continue to carry out their usual activities of daily living and remain in the workforce throughout their chemotherapy regimen. Chemo brain can impact the productivity of the labor force. Patients with chemo brain may not be as productive as they were prior to receiving chemotherapy. They may have to spend more time on tasks because they cannot remember details that they once took for granted. This comes at a cost to the patients who experience it, the nurses who treat them, and to society.
The Oncology Nursing Society Research Agenda 2005 and Healthy People 2010 and 2020 identify the study of neurological effects of chemotherapy (including cognitive dysfunction) as a priority research area for nurses. The key take home message is that we still need to be educated. We need to educate our patients about chemo brain, but we first need to know ourselves.
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