Pcn466 Health-Related Quality of Life (Hrqol) in Clinical Practice for Immune-Checkpoint Inhibitors (Ici)-Treated Patients: What Are Patients' Experiences and Expectations? Results From an Online Patient Community Research

Abstract

Immune-checkpoint inhibitors (ICI) are emerging as the standard of care for many cancers. However, HRQoL of patients treated with ICI in the real-world remain largely unknown. Social media is increasingly used by patients to express their views about their illness and treatment experience. The objective was to assess the conceptual similarity between cancer generic HRQoL measures and cancer patients' experience described in social media. Methods: Patient messages were retrieved from 19 different French social media sources between Jan-2011 and Aug-2018. Messages of interest were extracted using automatic processes and manual searches. Extracted messages were analysed by two independent reviewers. HRQoL statements were classified according to predefined HRQoL dimensions in the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 and FACT-G. Results: Overall, 137 ICI-treated patients posted HRQoL-related messages on social media. Cited dimensions of HRQoL were global health (115 patients), symptoms (76; mean: 2.1 per patient), emotion (49), role ( 22), physical functioning (13), professional situation (2) and cognitive state (2). Both the QLQ-C30 and FACT-G cover global health dimension expressed by patients in their messages. A total of 13 symptoms were identified from messages; the QLQ-C30 captured 5, whereas the FACT-G captured 3. Ten themes related to emotional functioning were identified, 2 were covered by the QLQ-C30 and 3 by the FACT-G. Seven themes were retrieved describing patients' role; the QLQ-C30 captured 5, whereas the FACT-G captured 3. In terms of physical functioning, 4 themes were identified; the QLQ-C30 captured all themes, whereas the FACT-G captured 1. Conclusions: Conceptual similarity between HRQoL themes from social media and the most commonly used generic HRQoL measures was generally suboptimal. Careful interpretation is required due to the relatively low sample size. A larger study on social media would be needed to assess correlation with tumor specific questionnaires of HRQoL.

Management of lung cancer patients' quality of life in clinical practice: a Delphi study

“…Similarities can be observed when comparing our findings from the present study and those from cross-sectional surveys with patients with cancer assessing content, quality, and expectations regarding HRQoL. 35 Even if gaps were highlighted by patients between their expectations and the day-to-day clinician practice, both patients and physicians valued the importance of integrating HRQoL discussion during the entire care pathway as a critical lever to improve care outcomes and patient welfare. Both patients and physicians identified unmet needs to allow for a stronger rationale for the integration of HRQoL into routine clinical practice.…”