Understanding Quality-of-Life Impacts in Lung Cancer Via Social Listening from Patient and Caregiver Perspectives

2021 Year in Review - Non–Small-Cell Lung Cancer

Patients and caregivers are increasingly turning to social media to learn about and share their disease-related experiences. Lung cancer is the most common cancer in the world, affecting more than 2 million people. This observational study used social listening to analyze social media trends to learn more about quality-of-life (QOL) impacts and perceptions in patients with advanced lung cancer.1

A study was undertaken by gathering retrospective data (June 2019 to May 2020) from 14 European countries’ open-access blogs, forums, and social networking sites. Using social media aggregator tools, conversations involving lung cancer and non–small-cell lung cancer (NSCLC)-specific phrases were retrieved. Automated relevancy algorithms and manual assessment were used to filter the data into a contextualized data set.1

Patients and caregivers were the key stakeholders in 1360 interactions, 100 of which were about QOL. The predominant QOL consequence (70%) was emotional strain, which was linked to all stages of the patient experience. Patients were overwhelmed by the amount and complexity of information available at the time of diagnosis, as well as disheartened by survival rates. Patients often felt stigmatized because of their smoking history, as if they were seen to be responsible for their illness. Fear and anxiety arose as a result of awaiting test results and relapse; the lack of appropriate postrelapse treatments added to the misery. Because of a lack of empathy and communication, some patients felt abandoned by physicians. Physical QOL issues, such as side effects and long-term physical handicap, were highlighted in 38% of talks. Muscle ache, dyspnea, and weariness were among the symptoms mentioned. Only 2% of conversations included the topic of social wellness. Nine percent (N = 539) of dialogues were about clinical outcomes where improved QOL was mentioned as a treatment goal.1

The greatest QOL consequence of lung cancer, according to this study, is mental burden, followed by physical effects. Despite the limits of social listening, this study adds to our understanding of the lung cancer experience and emphasizes patients’ desire for more medical empathy.1 From the caregiver perspective, studies have shown that their patients’ QOL has a greater impact on caregiver burden than lung cancer stage.2

References

  1. Montrone M, Chauhan J, Sagkriotis, et al. Understanding patient and caregiver perceptions of quality of life (QoL) impacts in lung cancer through social listening. Ann Oncol. 2021;32(suppl 5):S1024.
  2. Borges EL, Franceshini J, Degani Costa LH, et al. Family caregiver burden: the burden of caring for lung cancer patients according to the cancer stage and patient quality of life. J Bras Pneumol. 2017;43:18-23.

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