Falling into a mental thick fog: living with Chemobrain (Quid series)
Amongst chemotherapy’s many side effects, one is drawing increasingly more attention in the healthcare community: Chemobrain (also known as Chemofog). What does this term refer to? Chemobrain is a common term used by cancer survivors to describe thinking and memory problems that can occur during and after cancer treatment. [1]
Patients have to cope with several symptoms (summarized by the American Cancer Society [2]) such as:
- Forgetting things that they usually have no trouble remembering (memory lapses)
- Trouble concentrating (they can’t focus on what they’re doing, have a short attention span, may easily “space out”)
- Trouble remembering details like names, dates, and sometimes larger events
- Trouble multi-tasking, like answering the phone while cooking, without losing track of one task (they’re less able to do more than one thing at a time)
- Trouble learning new things
- Taking longer to finish things (disorganized, slower thinking and processing)
- Trouble remembering common words (unable to find the right words to finish a sentence)
It is therefore no surprise that these symptoms have a high impact on their quality of life, on their families and on their psychological wellbeing. We thus decided to get to know more about how patients are dealing with Chemobrain and hopefully bring more awareness to a still largely ignored or unknown issue.
OUR RESEARCH METHODOLOGY
Our analysis was a mix of manual and automated search to provide insights about the burden of chemobrain on patients’ life and how they are dealing with these symptoms. Using TikTok, Twitter, Facebook, and other social & digital media platforms, we identified key topics of conversation alongside Quid mapping. The analysis is based on a global country level and in English.
You are surely one of our most loyal readers, therefore you already know words like “Quid” & “Cluster” by heart and the methodology description might sound redundant… However, if you want to brush up the main concepts, you’ll find these at the end of the article in appendix!
KEY TAKE AWAYS
1. The willingness of patients, their families, and caregivers to share their stories is striking considering the sheer volume of social media conversations and content focused on this topic. The desire of raising awareness is a strong driver as Chemobrain symptoms are well known by patients themselves, contrary to other more widely known chemotherapy side effects in the overall population, such as hair-loss, fatigue, etc.
2. Chemobrain has a significant impact on patients’ lives -and on their families- both from a practical and emotional perspective: dealing with daily tasks such as recalling a name, remembering appointments, working properly without being distracted can prove to be very difficult. Many patients resort to Social & Digital media for support, to share stories and feel as part of a community.
3. Scientific content also makes up a portion of the conversation around Chemobrain. Numerous articles are shared on new studies, comparing Chemotherapy induced cognitive impairment to other conditions which involve attentional and mnemonic functions (such as Alzheimer’s disease).
THE CHEMOBRAIN NETWORK MAP & THE SOCIAL MEDIA LANDSCAPE OVERVIEW
Our analysis led to a grand total of 8 clusters.
Overall, the Digital Landscape is dominated by stories of patients sharing their experiences with Chemobrain, with some stories of scientific focus on research and general explanations of the phenomenon.
Glancing at social media platforms, TikTok, Youtube & Instagram appear to be some of the preferred channels for patients to voice their daily challenges and achievements. Patients sometimes also choose to convey messages in a humorous tone to soften the often-significant impact chemobrain has on their lives.
TOP 3 CLUSTERS ANALYSIS
#1st Patients experiences & daily challenges of living with Chemobrain
With 30% of stories, patients with Chemobrain, their families and caregivers, dominate the landscape discussing struggles and feelings about coping with everyday life challenges, mostly in a blog format.
It’s common to read about patients’ daily routines, and the difficulties they are facing but also their achievements. Chemobrain is a “hot topic” for people who are going through/have undergone chemotherapy (considering that side effects can last from a few months to 10 years after ending treatment [4]). We find patients describing in detail situations in which Chemofog impacted their quality of life:
“I lose thoughts in an instant. Sometimes I actually “see” them disappear in the distance. It’s such a weirdly tangible sensation. I can try to grasp at their coattails and occasionally I’m successful in latching onto the thoughts and pulling them back. Other times I need to stop and walk back through my thought processes to retrieve them. And then sometimes they’re just gone. My desk at work is covered with post-it notes as a testament to what’s going on in my noggin. If there’s something I need to do I need to write it down NOW, and it’s not unusual for me to lose the thought as I’m in the process of getting something to write it down on!” [5]
Chemobrain (also known as an “invisible effect “[6] of chemotherapy), can affect tasks as simple as cooking and picking up the phone. Unsurprisingly, caregivers and families play a key role in helping cancer patients facing these side effects not only by supporting them to establish new routines to make their lives easier (for example, using post-it as reminders), but also helping them manage anxiety, anger & depression.
“I certainly can’t remember how to make coffee. G drew me a little picture map with measurements and buttons and arrows to show me how. I have it stuck to the front of my monitor. G tells me when we have seen a TV show. At the start of all this I would say, “I haven’t seen it.” Now I don’t say a thing.” [7]
A social & digital media analysis that was presented as a conference poster at ISPOR (The Professional Society for Health Economics and Outcomes Research) revealed that: “Chemobrain represented 30% of social media conversations (Twitter, Reddit, forums). Patients described very specific and consistent issues, including memory loss and having to write everything down, name or word dropping, short- and long-term difficulty concentrating, organising thoughts or multitasking. Symptoms are a significant burden for patients, compromising their ability to return and be efficient at work, perform everyday tasks, enjoy hobbies.” [8].
In addition to this, the emotional burden of living with chemobrain goes beyond what we highlighted above, as patients feel they have difficulties being understood, or feel uncomfortable in addressing a conversation. Possibly the worst and most devastating feeling is the fear of not being able to regain control of their cognitive functions after the chemotherapy.
#2nd Breast Cancer & Chemobrain stories
Breast Cancer specific stories represent 18% of the landscape. As expected, we find very similar traits of Chemobrain in breast cancer cases, including patients’ inability to use acquired skills, to remember their child’s name or a birthday. Despite these challenges, which bring their fair share of frustration and hopelessness, there are people who try to find a silver lining:
“Chemotherapy was an important part of my cancer treatment. Sometimes I just miss my old brain, and I do think things have improved for me over the years. Still, I am more forgetful, and I struggle more to form coherent sentences since my cancer treatment almost ten years ago. I struggle more with fatigue too. And yet, I am grateful, completely grateful and fortunate to still be here. [9]”
#3rd Chemotherapy-induced cognitive impairment (CICI): research, studies & therapies
Last but not least, the third biggest cluster (17%) covers scientific research. Content refers to the latest studies on root causes of chemobrain, various perspectives and potential new treatments of the disease, and comparison of diseases which lead to cognitive impairment (such as Alzheimer disease).
For instance, a study on older breast cancer patients shows that women who carry the APOE4 gene (linked to Alzheimer) were more at risk to develop chemobrain. The lead researcher, Dr. Jeanne Mandelblatt said that “our study suggests that, for most older breast cancer patients, chemotherapy and hormonal treatments do not have major adverse effects on cognitive function, at least as measured by our current tests”. [10]
Alzheimer may be one of the most common diseases compared to Chemobrain within the scientific community, but some patients have a perspective of their own on the matter.
Posts on social media by patients comparing chemobrain with ADHD (Attention-deficit/hyperactivity disorder [11]) are far from few.
Patients support that they developed ADHD like symptoms following chemotherapy. Some even mentioned the possibility to be treated with ADHD medicine as a way to alleviate Chemobrain symptoms [12]. However, these statements need to be interpreted with caution and patients should always consult with their physicians on the best suitable treatment.
Another study highlights the worsening of cognitive impairments problems in “patients with anxious or depressive symptoms” [13], which points to the importance of the psychological support of cancer patients (on top of managing symptoms) in order to prevent a worst cognitive decline.
Beyond scientific research focused on symptoms, such as brain imaging studies and studies on gut microbiome whose “Regulation May Reduce Multiple Chemo Side Effects” [14], there are also multiple findings on how to alleviate chemobrain symptoms. For instance, a study examines the positive outcome of physical exercise for patients who experienced cognitive problems due to chemotherapy. [15]
CONCLUSION
Chemobrain is one of the invisible side effects of chemotherapy and -as for everything unseen- patients have a burning need to express what they are feeling and to be understood.
“It can be difficult to explain to others what we are going through. I like to use the example of a computer. If our brain was a computer used to running six apps and multi-tasking for example on Facebook, Twitter, watching TV and doing WhatsApp at any given time, with chemo brain our brain may be able to use one app only and even then only for a short period of time. It will also take a lot longer to re-charge.” [16]
Here is where social and digital media fulfill a key function: these platforms act as an “open window to the world” for patients and families to open up about their challenges and opportunities, offering the chance to be heard. Is there still a debate about the usefulness of these platforms to discover patients’ unmet needs and unfiltered thoughts? “Ai posteri l’ardua sentenza,” in other words, people that will come after you will be the judge of that 😉!
What is even more urgent, for the scientific community and pharmaceutical companies, is to provide concrete treatments/methods to cure or alleviate symptoms of Chemobrain. The medical community itself is not properly equipped to deal with Chemobrain and patients, and their families/caregivers, are not receiving the support they require to confront such a life changing condition. Finding solutions, even if not perfect, for such a huge unmet need is critical to improve patient outcome and maintain their quality of life. How about starting with the mandatory inclusion of a mental health expert in the patient medical team that would prepare patients to face Chemobrain before undergoing chemotherapy and mitigate its devastating emotional impact? Or how about including digital therapeutics, based on cognitive therapies, such as MyCogntion [17] as part of the treatment program?
This concludes our analysis of the Chemobrain Social & Digital Landscape. We hope it was food for thought! Stay tuned for new content!
Authors: Julien Goretti / Sara Boretti /Ilia Triantafylliddi
Appendix:
· Quid is a text-based data analysis and visualization tool, which uses machine learning and natural language processing to identify patterns within a text-based dataset and cluster information.
Quid uses machine learning and natural language processing to identify patterns within a text-based dataset and cluster information. Quid enabled us to create a “network” of topics that interact with each other, forming clusters. A cluster represents a group of articles in the overall analysed universe, which primarily cover a specific topic. Each cluster has been verified and, where necessary, some content has been recategorised manually. Each node represents an article, and each colour represents a cluster created via text analysis and natural language processing.
To maximize the network map’s clarity and readability, we excluded clusters that represented less than <1% of the content.
· Brandwatch is a text-based analytical tool which aims to analyze conversations on blogs, forums, social through queries editing. A query is a keyword-based search constructed using boolean operators, which retrieve matching mentions from millions of online sources.
