OBJECTIVES

: Chemobrain /chemofog are terms that describe the cognitive impairment occurring during or after discontinuation of antineoplastic treatment, affecting approximately 12-75% of cancer patients. Although chemobrain has a high prevalence, and well-defined symptoms, it is seldom discussed in scientific research as compared to other side effects of antineoplastic treatment. This study aims to explore patients and physicians’ perspectives on chemobrain symptoms and its impact on quality of life (QoL) in a qualitative and exploratory way.

METHODS

: Two qualitative approaches were combined. We conducted a social and digital media research across four countries (United States, United Kingdom, France, Belgium) between January 2019 to November 2020. Data from platforms (Twitter, Reddit, Specialized forums, Instagram, YouTube) were analysed using a combination of social listening tools (Brandwatch, Buzzsumo, Quid). We conducted manual web-based searches to understand, categorize, quantify and qualify content and conversations surrounding chemobrain. We also conducted in-depth interviews with three patients and two oncologists in France.

RESULTS

: Across the 2,800+ social media posts analysed and 5 qualitative interviews, patients had no difficulty describing the symptoms of chemobrain or its impact on QoL. 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. Furthermore, chemobrain was associated with significant psychological impact.

CONCLUSIONS

: Chemobrain is appropriately described by sufferers as a genuine side effect of chemotherapy, with highly specific symptoms, and important impact on both QoL and ability to lead a normal life. More studies are needed to evaluate chemobrain's prevalence and characteristics, raising awareness of its debilitating effects.