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Study Explores Symptoms, Lived Experiences of Patients With NSCLC Using Social Media


Researchers assessed public posts on websites to better understand the experiences of patients with non–small cell lung cancer (NSCLC).

Results of an exploratory observational analysis offer insights on the lived experiences of patients with non–small cell lung cancer (NSCLC) in an era of novel therapies.

The findings, which detail the most reported symptoms and their impacts in this patient population, can be used to inform research on treatments for the disease along with patient management, authors wrote. The study was published in JMIR Cancer.

NSCLC makes up around 84% of all lung cancer cases in the United States. Approvals of immuno-oncology (IO) and targeted therapies (TTs) have dramatically altered the treatment landscape for NSCLC, although “insights on the patient experience with these therapies and their impacts are lacking,” researchers explained.

In an effort to assess real-world data on patients’ experiences, investigators analyzed discussions posted on lung cancer–specific social media. All included posts were publicly available and published between January 2010 and November 2019.

Posts were gleaned from the following sites: MacMillan Cancer Support, LUNGevity Lung Cancer Support Community, Health Boards, Cancer Survivors Network, and Cancer Compass.

Using natural language processing (NLP) and machine learning, researchers stratified patients and caregivers into metastatic- and adjuvant-eligible cohorts. They also stratified patients based on the treatment they received.

“Qualitative data analysis (QDA) was conducted on random samples of posts mentioning pain-related, fatigue-related, respiratory-related, or infection-related symptoms to capture the patient experience with these and associated impacts,” researchers wrote.

A total of 1724 users (50,390 posts) made up the metastatic group and 574 users (4531 posts) made up the adjuvant group.

Individuals in the adjuvant group underwent surgery and were then treated with chemotherapy, IO, TT, or radiation therapy, whereas those in the advanced or metastatic cohort were treated with chemotherapy, IO, or TT.

Analyses revealed the following:

  • Pain, discomfort, and fatigue were the most commonly mentioned symptoms in the metastatic group.
  • The most frequent impacts of symptoms related to physical impairments, sleep, and eating habits in this group.
  • In the adjuvant group, pain, discomfort, and respiratory symptoms were the most commonly mentioned.
  • Impacts from these symptoms were mostly related to physical functioning in this cohort.

Regardless of treatment status, the most commonly mentioned symptom among patients was pain. In addition, for patients who underwent surgery with or without radiation therapy, respiratory-related symptoms were more commonly reported compared with the cohort who received adjuvant NSCLC treatment.

“Symptoms, including pain and fatigue, appeared to be more commonly mentioned among patients who received adjuvant NSCLC treatment than among users who received surgery +/- [radiation therapy] only,” authors added.

The QDA also found that additional negative impacts associated with symptoms included an inability to exercise, difficulty sleeping, and taking time off from work for surgery in the group who underwent surgery and radiation therapy only.

In the adjuvant group who received treatment post surgery, these impacts included difficulty walking, feeling frustrated, oversleeping, and having difficulty at work.

Findings may not be generalizable to the entire patient population with NSCLC, authors cautioned. In addition, each group’s small sample size precluded researchers from drawing comparisons.

“Our study suggests that pain and fatigue are not only the most common symptoms or side effects but also among the most bothersome to patients, as measured by social media posting activity,” researchers wrote.

“This underlines the importance of understanding how treatments are likely to impact pain and fatigue,” they added.

Going forward, the findings could be validated in additional studies and further explored to better understand patients’ needs.


Booth A, Manson S, Halhol S, et al. Using health-related social media to understand the experience of adults with lung cancer in the era of immuno-oncology and targeted therapies: observational study. JMIR Cancer. 2023;9:e45707. doi:10.2196/45707

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