Experiences and Care Pathways Shared on Social Media Regarding 5 Conditions Causing Chronic Pain

NCT07871578 — Completed, 501 participants, Central Hospital, Nancy, France

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Is Lyme Borreliosis Experienced Differently From Other Chronic Pain Conditions? An Infodemiological Analysis of Symptoms, Treatments and Healthcare Pathways

Registry	NCT07871578
Status	Completed
Study type	Observational
Enrollment	501 (Actual)
Sponsor	Central Hospital, Nancy, France (Other); collaborators: University Hospital, Strasbourg, France, University Grenoble Alps
Conditions	Lyme Borreliosis, Fibromyalgia, Rheumatoid Arthritis (RA), Post Acute COVID 19 Syndrome, Endometriosis
Dates	start 2025-03-17, primary completion 2025-07-03, completion 2025-07-03, first posted 2026-10-13, last updated 2026-10-13
Locations	1 site in France

-Summary

Chronic pain is a major symptom shared by several medical conditions. This study focuses on five well-defined chronic diseases : Lyme Borreliosis (LB), Post-Acute COVID-19 Syndrome (PACS or "long COVID"), fibromyalgia, endometriosis, and rheumatoid arthritis. Although all of these conditions are associated with chronic pain, they differ in several important aspects, justifying their choice for a comparison.

The overall objective of this study was to describe the symptoms, treatments, and healthcare pathways associated with these five conditions, as reported by patients on social media platforms and online forums. The specific objectives were to compare PTLDS with the four other conditions across the following aspects: (i) Incompatible symptoms reported by patients; (ii) Different components of pain : physical, emotional, and social; (iii) Healthcare pathways; and (iv) Adherence to treatment recommendations.

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+Arms and interventions

Arm	Type	Interventions	Description
Lyme borreliosis			Patients describing themselves as having Lyme borreliosis
Endometriosis			Patients describing on internet themselves as having Endometriosis
Fibromyalgia			Patients describing on internet themselves as having Fibromyalgia
Rheumatoid Arthritis			Patients describing on internet themselves as having Rheumatoid Arthritis
Post-Acute COVID-19 Syndrome			Patients describing on internet themselves as having Post-Acute COVID-19 Syndrome

+Outcome measures

Primary outcomes

symptoms [Baseline]: Comparison of symptoms reported by patients across all conditions in social media or forum posts not suggestive of the disease
Treatments [Baseline]: Comparison of non-recommended treatments, reported by patients across all conditions in social media or forum posts
healthcare pathways [Baseline]: Comparison of healthcare pathways, reported by patients across all conditions in social media or forum posts
Biopsychosocial Model of Pain [Baseline]: Comparison of the different components of pain : physical, emotional, and social, reported by patients across all conditions in social media or forum posts

+Eligibility

Sex: All

Inclusion Criteria:

* posts had to be published on four platforms: Instagram®, Facebook®, Twitter®/X®, and patient forums
* they had to be publicly available (i.e., from open accounts);
* they had to include one or more of the following keywords in French equivalents: "fibromyalgia", "Lyme", "long COVID" (for PACS, because this term is not used by patients), "endometriosis", and "rheumatoid arthritis"
* posts had to be written in French.

Exclusion Criteria:

* none

+Locations (1)

Facility	City	Country	Status
CHRU Nancy	Nancy	France