JMIR Publications

ABSTRACT

Background:

Immune checkpoint inhibitors (ICIs) are increasingly used to treat several types of tumors. However, information on their impact on patients’ health-related quality of life (HRQoL), usually collected in clinical trials through standard questionnaires, might not fully reflect HRQoL in patients treated with these emerging therapies under real-world conditions. In parallel, users’ narratives from social media represent a potential new source of research concerning HRQoL.

Objective:

To assess and compare coverage of ICI-treated patients’ HRQoL domains and sub-domains in standard questionnaires from clinical trials and in real-world setting from social media posts.

Methods:

A retrospective study was carried out by collecting social media posts in French language written by Internet users mentioning their experiences with ICIs between January 2011 and August 2018. Automatic and manual extractions were implemented to create a corpus where domains and sub-domains of HRQoL were classified. These annotations were compared with domains covered by two standard HRQoL questionnaires, the EORTC QLQ-C30 and the FACT-G.

Results:

We identified 150 users who described their own experience with ICI (56.0%) or those of their relative (44.0%), with 137 users (91.3%) reporting at least one HRQoL domain in their social media posts. Eight domains and 42 sub-domains of HRQoL were identified: Global health (1 sub-domain; 115 patients), Symptoms (13; 76), Emotional state (10; 49), Role (7; 22), Physical activity (4; 13), Professional situation (3; 9), Cognitive state (2; 2), and Social state (2; 2). The QLQ-C30 showed a wider global coverage of social media HRQoL sub-domains than the FACT-G, 45.2% (19/42) and 28.6% (12/42) respectively. For both QLQ-C30 and FACT-G questionnaires, coverage rates were particularly suboptimal for Symptoms (55.3% and 58.5%, respectively), Emotional state (14.3% and 49.0%) and Role (77.3% and 68.2%).

Conclusions:

Many cancer patients are using social media to share their experiences with immunotherapy. Collecting and analyzing their spontaneous narratives are helpful to capture and understand their HRQoL in real-world setting. New measures of HRQoL are needed to provide more in-depth evaluation of Symptoms, Emotional state and Role among cancer patients treated with immunotherapy.