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Patients With NSCLC Describe Experiences of Symptoms on Daily Life


Patients with advanced or metastatic non–small cell lung cancer (NSCLC) were able to specify a 1-point threshold when describing meaningful symptom change, for better or worse, that helped illustrate their symptom experience.

Patients with advanced or metastatic non–small cell lung cancer (NSCLC) specified a 1-point threshold for meaningful change based on their own symptom experience, whether it was an improvement or worsening, that emphasized the importance of using qualitative methods to review disease-related symptoms, treatment-related side-effects, and the impacts on daily life for such patients, according to Frontiers in Psychology.

Approximately 65% of patients with NSCLC present with advanced or metastatic disease that is linked with significant symptom burden, with previous studies discovering that symptoms such as fatigue, shortness of breath, cough, loss of appetite, and pain reported as the most common. These symptoms are known to worsen as disease progression continues and have a negative impact on emotional functioning and health-related quality of life.

A total of 19 US-based patients with stage IV NSCLC were recruited between February and April 2022: 95% female, 63% White, 79% who had been diagnosed a year or less, and 63% who were receiving targeted therapy. More than half of the patients signified that their most important symptoms were fatigue, shortness of breath, and cough.

Woman touching forehead

Woman touching forehead| Image Credit © Pexels

Patient experience of advanced or metastatic NSCLC was evaluated in this prospective, non-interventional qualitative research study utilizing interviews. These interviews delved into the most important symptoms, daily life impacts, and patients’ perspectives of what they consider meaningful change when taking their current symptoms into consideration versus 6 to 12 months before, based on the Patient Global Impression of Severity (PGI-S) and Patient Global Impression of Change (PGI-C) items.

Concordance on whether patient differentiation between symptoms were disease- or treatment-related was lacking, and patients were often not able to distinguish the 2. The most frequently cited impacts of these symptoms on the daily lives’ of patients were difficulty walking, sleep disturbance, anxiety/depression, impact on relationships, and difficulty carrying out daily tasks. The majority of patients considered a 1-point change on the PGI-S or PGI-C to be meaningful based on their symptom severity rating at the time of the interview compared with 6 to 12 months prior to the interview.

“Importantly, the methodology of this study requested patients evaluate what constitutes meaningful change in their symptoms qualitatively and based on their real-world experience,” highlighted the researchers.

Also, the results of this study suggest that treatments for NSCLC can cause side effects that overlap with or worsen disease-related symptoms, and some patients might not be sure as to which symptoms are caused by their disease versus their treatment.

In general, 50% of all unique symptoms identified were captured by at least 1 questionnaire, and all of the most frequently reported symptoms were captured by either the EORTC-QLQ-C30 or EORTC-QLQ-LC13.

A 1-point change on the PGI-S or PGI-C might be a possible anchor for patient-reported outcome (PRO) end points used in clinical trials. It is important to use PRO instruments that encompass the symptoms and impacts acknowledged as most important to patients.

“These findings highlight the importance of using qualitative methods to assess disease-related symptoms, treatment-related side effects, and the impacts on daily life for patients with advanced or metastatic NSCLC, underscoring how qualitative assessments can complement quantitative PRO instruments for evaluating clinical trials,” emphasized the researchers.

Additionally, to make sure a patient-centered trial design is present, clinical trials reviewing treatments for advanced or metastatic NSCLC should prioritize measuring symptoms noted by patients as the most important, especially fatigue, dyspnea, cough, pain, and gastrointestinal issues.

This study has some limitations. First, the sample of 19 patients lacked diversity in sex and race and may not represent the wider population of patients with NSCLC. Also, this study only included patients from the US who were fluent in English, which limits the generalizability of the findings to patients from other countries and cultural backgrounds.

“…our interview-based methodology allowed insight into how meaningful change could be defined in terms of daily life impact, and therefore qualitative interviews may be a beneficial addition to quantitative PRO instruments,” concluded the researchers.


Cardellino A, Shah M, Hanlon J, et al. Perspectives of patients with advanced or metastatic non-small cell lung cancer on symptoms, impacts on daily activities, and thresholds for meaningful change: a qualitative research study. Front Psychol. Published online September 8, 2023. doi:10.3389/fpsyg.2023.1217793

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