Editor’s note: This text-based course is a transcript of the webinar, Cognition and Cancer, Part 1, presented by Theresa Marie Smith, OTR, PhD, CLVT.
- After this course, participants will be able to identify the prevalence of cognitive impairment in breast cancer survivors.
- After this course, participants will be able to recognize the executive functions adversely affected for many breast cancer survivors.
- After this course, participants will be able to list other factors affecting cognition for breast cancer survivors as supported by the literature.
- Occupational therapy has long been provided to cancer survivors, but the focus was primarily on physical function.
- Indirect factors influencing more occupational therapy involvement in cancer rehabilitation:
- Growing understanding that ‘chemo brain’ can be measured
- Increased evidence of brain plasticity/neurogenesis
Hello, and thank you for coming. This is part one of Cognition in Cancer. Occupational therapy has been involved with cancer survivors for quite some time. However, the focus has been primarily on physical function as many clients present with pain or limited range of motion. There are also indirect factors that influence more occupational therapy involvement in cancer rehab so we have seen growth in this practice area. There is a growing understanding that "chemo brain" can be measured and not just by subjective comments. There is increasing evidence of brain plasticity and neurogenesis of new cell growth, and we have certainly seen that with constraint-induced therapy as an example.
AOTA Direct Changes
Changes made by the profession:
- Greater focus on health and wellness
- ACOTE standard (B4.9) “to design and implement intervention strategies to remediate and/or compensate for functional cognitive deficits…” (https://acoteonline.org/)
- Cognitive CPT codes added in 2019 of 97129 and 97130 (https://www.aota.org/Advocacy-Policy/Federal-Reg-Affairs/News/2019/Cognitive-Function-Intervention-Code-2020.aspx)
- Addition of Health Management to OTPF-4
There are direct changes from AOTA affecting us, especially with a greater focus on health and wellness. ACOTE standard B4.9 states that occupational therapists are to "design and implement intervention strategies to remediate and compensate for functional cognitive deficits." There are CPT codes added in 2019, 97129 and 97130, to address cognitive deficits. Lastly, in the OTPF-4, published in 2020, the area of health management was added, including cognitive rehab and cancer rehabilitation.
Prevalence and Incidence
- Cancer is a prevalent disease in our society. The American Cancer Society (2021) estimates that 1.9 million individuals will be diagnosed this year with cancer.
- In 2021, about 30% of newly diagnosed cancers in women will be breast cancer (U.S. Breast Cancer Statistics, 2021).
- In January 2021, it was estimated that 3.8 million women have a history of breast cancer (U.S. Breast Cancer Statistics, 2021).
Cancer is a prevalent disease in our society. In 2021, the American Cancer Society estimates that 1.9 million individuals will be diagnosed with cancer. In 2021, about 30% of newly diagnosed cancers in women will be breast cancer. In January 2021, it was estimated that 3.8 million have a history of a breast cancer diagnosis. Males make up about 1% of breast cancer survivors, which is a very low percentage. There is also a growing population of head and neck cancers due to HPV or the human papillomavirus, resulting in continued infection.
- As cancer treatment becomes more efficient and effective, more survivors are living with mild cognitive impairment.
- It has been estimated that as many as 75% of women breast cancer survivors experience cancer-related cognitive impairment (CRCI; Yang & Hendrix, 2018).
- Cognitive deficits commonly last for 1-2 years after the last cancer treatment but can be persistent or late-onset in 20-30% of survivors (Ahles & Root, 2018)
As cancer treatments become more effective and efficient, more survivors are living with mild cognitive impairment. It has been estimated that as many 75% of women who are breast cancer survivors experience cancer-related cognitive impairment. Cognitive deficits commonly last for one to two years. So, it would not be unusual for you to know a breast cancer survivor. These cognitive symptoms can last one to two years, which is a pretty long time, but 20 to 30% of survivors will continue to have these cognitive deficits long after.
History of "Chemo Brain"
- Ahles and Root (2018):
- Effects are subtle compared with degenerative conditions or central nervous system disorders.
- Self-reports include distraction, forgetfulness, & difficulties with attention, multitasking, and word finding.
- Neuropsychological testing and growth in neuroimaging advanced evidence from subjective to objective findings.
The term chemo brain is not a medical term. It discounts what is happening to people with cognitive deficits secondary to cancer or cancer treatments. Cognitive deficits in breast cancer survivors are on a continuum. They are unlike the deficits that we see in degenerative conditions or central nervous system disorders such as a stroke or TBI.
Breast cancer survivors self-report distraction, forgetfulness, and difficulties with attention, multitasking, and word-finding. When we look at those with breast cancer, most medical care providers are concerned with medical survival.
- Neuroimaging studies (MRI) found reduced dorsolateral prefrontal cortex volume (middle frontal gyrus, superior frontal gyrus, frontal poles) (Correa et al., 2013) and alterations in white matter integrity in anterior/prefrontal regions (Correa et al., 2016)
- Neuropsychological tests: detect changes in attention, processing speed, working memory, learning, and executive function (Ahles & Root, 2018).
Neuropsychological testing and growth in neuroimaging have now shown more objective findings on chemo brain. We can see clearly on MRIs, FMRIs, and neuroimaging studies that there is a reduced dorsolateral prefrontal cortex volume occurring in the middle and superior frontal gyri and the frontal poles. There are also alterations in the white matter integrity in the anterior or prefrontal regions.
Neuropsychological tests can detect changes in attention, processing speed, working memory, learning, and executive function, which align with the complaints we have heard for many years.
Cognitive Effects of Cancer and Cancer Treatments
- Cognitive pretests before cancer treatments have shown cognitive impairment for up to 30% of patients (Janelsins et al., 2014)
- They are underdiagnosed and undertreated
- Breast cancer treatments affecting cognition
- Surgery (anesthesia)
- Chemotherapy (including neo-adjuvant)
- Endocrine (Tamoxifen) (Ahles & Root, 2018)
We can now measure cognition before any cancer treatments are administered and see that cognitive pretests show that up to 30% of the patients have cognitive impairment. We will look a little bit later at what might be causing cognitive impairment before treatment.
Breast cancer survivors are underdiagnosed and undertreated for cognitive deficits. Many types of breast cancer treatments affect cognition, including surgery, anesthesia, chemotherapy, radiation, and endocrine (Tamoxifen). And, individuals can take Tamoxifen for years.
- Cognitive impairments attributed to cancer treatments are deficits in memory, attention, processing speed, and executive function (Von Ah et al., 2014). These cognitive deficits result in decreased quality of life and functional abilities (Hines et al., 2014).
- Mild cognitive impairment in breast cancer patients is underdiagnosed and leads to decreased participation in everyday activities that contribute to the individual’s wellbeing (Baxter et al., 2011; Baxter et al., 2014).
Cancer treatments cause deficits in memory, attention processing speed, and executive function, resulting in decreased quality of life and functional ability. And, mild cognitive impairment is underdiagnosed and leads to reduced participation in everyday activities. As occupational therapists, we know the importance of engagement in occupations for wellbeing.
- Memory is a three-part process. One must acquire (learn), retain, and retrieve information (Ahles & Root, 2018).
- Working memory is affected, and it can affect one’s ability to learn new information.
Memory is a three-part process. One must first acquire the knowledge, retain it, and then they need to retrieve the information. A straightforward example might be multiplication tables where you learned, retained, and now retrieve that information when needed. Working memory is usually cited in the literature as the memory type that is affected, and it affects one's ability to learn information.
- Attention is a long-term cognitive deficit seen in breast cancer survivors 10-20 years after treatment (Kesler et al., 2013)
- In a study of the impact of perceived cognitive impairment on breast cancer survivors (BCS), “most of the women also reported that they did not have the attention of concentration ability they once had.” (Von Ah et al., 2013, p. 238)
Attention is a long-term cognitive deficit seen in breast cancer survivors, even 10 to 20 years after treatment. In a study of the impact of perceived cognitive impairment of breast cancer survivors, most women reported that they did not have the attention or concentration they once had.
Processing Speed and Executive Function
- There are increasing amounts of evidence that cognitive deficits of BCS occur in the speed of processing (Meneses et al., 2017).
- Processing speed is highly correlated to working memory (Kim & Park, 2018).
- Executive function skills (e.g., planning, problem-solving, self-monitoring, self-awareness) (Joly, 2015).
The speed of processing is also affected. Can a person understand what they are hearing or seeing? And processing speed is highly correlated to working memory. Processing speed influences memory and executive function skills such as planning, problem-solving, self-monitoring, and self-awareness. I am sure you can appreciate how important planning is to almost anything we do in everyday life.
Occupational Performance Problems
- Working memory deficits- doesn’t maintain the necessary quantity of information
- Decreased attention- easily distracted and gets off task
- Decreased processing speed- slow to process
- Organization problems
- Time management issues
How do some of these deficits present in occupational performance? Again, there are working memory deficits. People are unable to retain the necessary quantity of information which is step two of the memory process. They also have decreased attention and are easily distracted and get off task. If they become easily distracted when information is coming in, they cannot retain that information. They may also be slow to process and have organizational problems. Part of planning is organizing what we need to perform a simple task. Additionally, these issues all affect their time management.
Occupations Adversely Affected
- Work- may never return to work or not return to the prior level of function (economic stability)
- Education- may not return to the prior level of function
- Rest and Sleep- pain, fatigue, energy conservation
- ADLs- sexual activity (body-image issues)
- IADLS- financial management, communication, driving
What are some of the occupations adversely affected? Someone may never return to work or a prior level of function. Problems at work are often related to decreased cognition, such as processing speed and memory deficits. If someone cannot work or return at a lower level of functioning, then obviously, their economic stability will be affected. One of my research participants was a nurse. She initially did not return to work but returned after several months. She became afraid that she would hurt somebody, so she stepped down from her face-to-face nursing job and returned in a different capacity. Besides cognitive deficits, individuals may have increased fatigue and cannot physically tolerate what is required at work. They may also be self-conscious about their appearance.
They may be involved in education and not able to return to their prior level of function. We are looking at change, and what I often call "a change in the dream that we thought that we would be living."
Rest and sleep are often affected. Participants in some of the studies had sleeping habits outside of the norm. For example, they might sleep late in the day. They were mainly able to handle their fatigue, but it is not addressed through sleep for somebody who has real fatigue. In other words, they still sleep but are still fatigued, despite the amount of sleep they get. I have met women that still have pain from past surgeries affecting their rest. Some have adapted to this fatigue using energy conservation techniques.
Activities of daily living, sexual activity, and body image are affected. There is quite a bit of literature on body issues. I will read you some quotes from a focus group that I held, which are on body image issues.
- "It may not be in the big picture, but when it's me, that no longer have breasts and have to look at myself each morning, it's a big thing for me."
- "It's something that is a constant reminder. I've got some scars. I just blew up, blew up. I was this little thing at first, and then I just blew up. It puts weight on you."
I am sure that you have seen someone with a headscarf and thought, "They must have breast cancer because they lost their hair." Loss of hair does not necessarily stop after chemotherapy, as there can be a total loss or a continued loss of hair. One of the participants in another study of mine had no hair, and she was very disturbed by this. She felt that she was not given the option of the type of chemo and would have chosen a different kind of chemo if she knew that she would lose her hair forever.
Some IADLs are problematic, like financial management, communication, and driving. Driving requires a lot of problem-solving.
Contributing Factors to Cognitive Impairment
- Cognitive reserve (education level, profession)
- Pathologic tumor markers
- Stress and trauma
- Ethnic/racial diversity and social, economic status
(Ahles & Root, 2018)
When I talked about pain and mentioned surgery, this is tied to body image and could be related to the age when someone has surgery for breast cancer. The number one contributing factor to cognitive impairment is age. We know that there are age-related cognitive deficits. Most of my study participants questioned whether their cognitive changes were related to age, cancer diagnosis, or breast cancer treatment. This is not known. However, we know that younger breast cancer survivors exist, and when someone is younger and has breast cancer, they have a more aggressive form of breast cancer. Studies show that younger clients tend to have reconstructive surgery, and surgeries also create additional scars. These scars may contribute to more issues with self-image difficulties.
Often people that have relatives with breast cancer will have breast cancer as well. The genetic part is interesting. If we look at the 1% of males that might get breast cancer, there needs to be more understanding about the odds of males getting cancer if they have females with breast cancer in their families. Would their odds increase? What type of tumor does the breast cancer survivor have? We know that there are four stages of cancer, and it is essential to know at which stage they received treatment and when it was diagnosed. Circling back to the males, they are going to be slow to be diagnosed.
Stress and trauma could be related to breast cancer. In a focus group that I did, everyone talked about what a shock it was to receive a breast cancer diagnosis. This is one of the times that we, as occupational therapists, could use our empathy. "What is it like to receive a diagnosis like that?" The other issue with stress and trauma is how successful the treatment is? How many side effects or lingering effects are there from the cancer treatment? "Well, it's time for me to go back for my mammogram. What's going to happen this time?
There are ethnic, racial, social-economic status factors. In one study, Latinos were more likely to gain weight, but survivors of all ethnic groups felt decreased self-worth and attractiveness. We also know that access to quality healthcare can be limited to some groups and populations.
I want to go back to age and mention that a younger breast cancer survivor or any breast cancer survivor can enter early menopause. Think of the effect on a younger cancer survivor who was looking forward to the role of motherhood, marriage, a partner, etc. They also are now feeling less attractive.
- Yang and Hendrix (2018) attributed the following as contributing to decreased cognition for BCS:
- Anxiety and depression combined
- Mental fatigue
- Undefined psychological distress
We have touched on some of these. In a study by Yang and Hendrix, they attributed the above as contributing to decreased cognition and related to the cognition itself. How might anxiety be related? When somebody is anxious, they tend to focus on what is causing the anxiety and often lose their focus.
Who wouldn't be depressed? There are physical symptoms and changes. Perhaps they are not going to be able to go back to their prior level of function. They could also die from the diagnosis. They will be hit with a lot of medical expenses, and not everybody can pay. There can be a combination of anxiety and depression. We certainly see that in the study findings.
It can be stressful even getting to the doctor's appointments. When one goes under chemo or radiation, they probably cannot drive, so they have to arrange rides. May they also be concerned about getting more chemo? They have a lot of worries. And, many clients may have mental fatigue or undefined psychological distress.
With all of these psychological variables in mind, I studied breast cancer survivors with a co-researcher and students. In this, we wanted to address the cognitive deficit and some of these other psychological variables. When our participants presented to us, they had some of these issues. We saw anxiety and decreased attention. We decided to add deep breathing exercises at the end of each group session to help reduce anxiety. We also added time before each of our group's sessions to express gratitude. While I do not have anything on the slides about gratitude, some studies now show that if a person comes from a position of gratitude, anxiety decreases and affects attention. The researchers (myself, co-researcher, students) and participants would go around the circle and state what we were grateful for that week. We felt that we could start with a more focused group by including these two exercises, deep breathing and the expression of gratitude.
Brain Plasticity and Other Treatment Considerations
- Brain neuroplasticity can be achieved (Fuchs & Flügge, 2014).
- Computer brain-training exercises can facilitate brain plasticity (Medeiros, 2017).
- At this stage, we need to do an Occupational Profile to ensure client-centered practice.
We know that brain neuroplasticity can be achieved. That is what more recent science has shown us, including constraint-induced therapy that I mentioned earlier. I have focused a lot of my research on computer brain training exercises because it has been shown that they can facilitate brain plasticity. Computer brain training exercises can promote brain plasticity, but we needed to know how it affected the client.
I asked throughout the study what they felt might help them. One participant said, "Maybe some exercises on learning to slow down." Often when people are anxious, they do not slow down. They may rush to do everything because they feel like their energy will give out, and we know that it is better to conserve energy. Another comment was, "It's tough to break that routine of bad things, bad habits, and to relearn." To access memory, we must first learn to code this first. What I think this person was suggesting to us as the researchers are could we add something about relearning in our sessions. Others wanted to know about relaxation techniques and stress reduction, like calming music.
This group of patients had one month of computer access to brain training exercises. While they reported enjoying the computer exercises, they did not necessarily use the ones that would be most effective. In other words, they reported specific symptoms, but those were not the exercises that they chose. We are going to talk about this in section two.
Before I summarize this session, I want to talk about the occupational profile and report what my participants have told me about support. All of the participants in my studies have been women. I opened it up to men, but with such a small amount of males affected, none have participated yet. However, I have had male caregivers involved with this. Many participants stated that they do not share with their family and friends their need for support. Remember, we, as occupational therapists, are great facilitators of support. Breast cancer support groups are strong support groups because breast cancer survivors talk about their journeys. The women's journeys are something I would like to explore more via the occupational profile.
Here is a quote from one of my participants. "It was life-changing that journey. It was life-changing. You go through more than just the physical medical experience. You go through mental, emotional, spiritual changes, and I'm still suffering." I do not want our clients to suffer. I am concerned that many clinicians are treating breast cancer survivors at a physical level only. A great example of only looking at the physical side is the treatment of lymphedema patients. I have had clinicians tell me that they knew their lymphedema clients had cognitive deficits, but they were not treating that. With a thorough occupational profile, we could also assess and address many other issues if someone is referred to us for specific reasons, like lymphedema. Another issue that often comes up with lymphedema patients is weight gain and managing that weight. Add to this changes in physical appearance after mastectomies and lumpectomies. If we think back to issues with self-image, think about how this would also significantly affect their feelings of self-worth. Again, a person's physical appearance has been shown to affect people's return to work.
- Cognitive deficits are no longer just measured by self-report from cancer survivors.
- There is a better understanding of neurogenesis.
- The AOTA has facilitated greater involvement on the part of occupational therapy practitioners in cognitive rehabilitation.
- Part 2
- We will explore the different measures used in cognitive assessment of BCS and intervention evidence.
I hope for the takeaway today is that cognitive deficits are no longer just measured by self-report from cancer survivors. How do they experience their cognitive deficits? What does it mean in their context? How does it affect their occupations? How do these cognitive deficits affect their role competence? Are they breadwinners? Fifty percent of the workforce is women. If we think about our current context and the chance of being immunosuppressed as a cancer survivor, what type of anxiety must this now add to breast cancer survivors? As a person that attends breast cancer support groups, I can tell you that they cannot meet right now in person. They are losing necessary support.
There are many assessments out there. We do not want to rely solely on self-report of how cognitive deficits are affecting someone. Is there a reason that they might not want you to know just how impaired their cognition is? Often, you will meet well-groomed and professional-looking women, but they can no longer do what they used to do, secondary to cognitive deficits. It is vital to give them a cognitive assessment that has been normed for breast cancer survivors. We know that neurogenesis occurs. What could we do as occupational therapists to affect the growth of brain cells?
AOTA has facilitated greater involvement on the part of occupational therapy practitioners in cognitive rehab. This is in our scope of practice, and perhaps in your particular setting, the speech-language pathologist is addressing this. I do not let that stop me. I address functional cognition and what is needed for their performance.
We will explore the different measures used in the cognitive assessment of breast cancer survivors and intervention evidence in part two.
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