MAPPING PATIENT EXPERIENCES WITH GLP-1 RECEPTOR AGONISTS TO THE EQ-5D-5L FRAMEWORK USING ONLINE COMMUNITY FORUMS
Author(s)
Omar Dabbous, MD, MPH1, Noreen Sullivan, BSc2, Howard Hussein Dabbous, MD3.
1Clearwater Beach, FL, USA, 2MHP Inc, Clearwater Beach, FL, USA, 3Dartmouth College, Hanover, NH, USA.
1Clearwater Beach, FL, USA, 2MHP Inc, Clearwater Beach, FL, USA, 3Dartmouth College, Hanover, NH, USA.
OBJECTIVES: To map patient experiences shared in online community forums by individuals receiving GLP-1 receptor agonists to EQ-5D-5L domains and identify concepts relevant to health-related quality-of-life measurement, PRO strategy, and patient-centered evidence generation.
METHODS: A retrospective qualitative study analyzed publicly available online community forum discussions from 2021 to 2026 containing GLP-1 receptor agonist-related narratives. Non-informative deleted, removed, or automated entries were excluded. De-identified patient-authored comments were classified using large language model-assisted concept extraction; researcher-reviewed classification determined final mappings. Concepts were mapped to mobility, self-care, usual activities, pain/discomfort, and anxiety/depression using a predefined EQ-5D-5L coding framework. Comments could map to multiple domains. Two qualitative researchers independently reviewed outputs, resolving disagreements by consensus. No clinical effectiveness or causal inference was attempted.
RESULTS: Among 17,547 GLP-1-relevant comments, 16,795 analyzable patient-authored comments from 10,934 unique authors were included. Overall, 11,069 comments (65.9%) mapped to at least one EQ-5D-5L domain. Usual activities was most frequent (7,140; 42.5%), reflecting daily functioning, eating routines, work, family responsibilities, and exercise. Pain/discomfort (4,863; 29.0%) reflected gastrointestinal symptoms, fatigue, injection burden, and dose-escalation tolerability. Anxiety/depression (4,374; 26.0%) captured emotional well-being, stigma, treatment uncertainty, fear of regain, and access-related distress. Mobility (2,826; 16.8%) reflected walking, stamina, exercise capacity, and physical participation, while self-care was less explicit (408; 2.4%). Additional patient-centered concepts were identified in 11,164 comments (66.5%), including food-related cognitive burden, motivation to persist, access disruption, titration, switching, and re-initiation.
CONCLUSIONS: Online community narratives aligned with all EQ-5D-5L domains while revealing GLP-1-specific concepts that may require supplemental qualitative exploration or PRO measurement. These findings support online forums as complementary sources for concept elicitation, PRO strategy, patient journey mapping, and hypothesis generation.
METHODS: A retrospective qualitative study analyzed publicly available online community forum discussions from 2021 to 2026 containing GLP-1 receptor agonist-related narratives. Non-informative deleted, removed, or automated entries were excluded. De-identified patient-authored comments were classified using large language model-assisted concept extraction; researcher-reviewed classification determined final mappings. Concepts were mapped to mobility, self-care, usual activities, pain/discomfort, and anxiety/depression using a predefined EQ-5D-5L coding framework. Comments could map to multiple domains. Two qualitative researchers independently reviewed outputs, resolving disagreements by consensus. No clinical effectiveness or causal inference was attempted.
RESULTS: Among 17,547 GLP-1-relevant comments, 16,795 analyzable patient-authored comments from 10,934 unique authors were included. Overall, 11,069 comments (65.9%) mapped to at least one EQ-5D-5L domain. Usual activities was most frequent (7,140; 42.5%), reflecting daily functioning, eating routines, work, family responsibilities, and exercise. Pain/discomfort (4,863; 29.0%) reflected gastrointestinal symptoms, fatigue, injection burden, and dose-escalation tolerability. Anxiety/depression (4,374; 26.0%) captured emotional well-being, stigma, treatment uncertainty, fear of regain, and access-related distress. Mobility (2,826; 16.8%) reflected walking, stamina, exercise capacity, and physical participation, while self-care was less explicit (408; 2.4%). Additional patient-centered concepts were identified in 11,164 comments (66.5%), including food-related cognitive burden, motivation to persist, access disruption, titration, switching, and re-initiation.
CONCLUSIONS: Online community narratives aligned with all EQ-5D-5L domains while revealing GLP-1-specific concepts that may require supplemental qualitative exploration or PRO measurement. These findings support online forums as complementary sources for concept elicitation, PRO strategy, patient journey mapping, and hypothesis generation.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
PCR6
Topic
Patient-Centered Research, Real World Data & Information Systems
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
Diabetes/Endocrine/Metabolic Disorders (including obesity)