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Social Media Connectedness in Fibromyalgia

15 luglio 2026 aggiornato da: Albert Einstein College of Medicine

Connectedness Via Social Media in Fibromyalgia Patients

Patients suffering from fibromyalgia commonly experience depressive symptoms such as loneliness and hopelessness due to the nebulousness of the disease. A primary purpose of social media is to promote connectedness, which is associated with improved well-being. Using archival, de-identified data collected by a social media company, this study aims to explore whether connectedness among patients with fibromyalgia facilitated by social media can improve mental and physical health outcomes.

Panoramica dello studio

Stato

Completato

Condizioni

Intervento / Trattamento

Descrizione dettagliata

Fibromyalgia is a chronically complex disease of unknown etiology defined by extensive vague musculoskeletal pain, modestly effective treatments, and strong association with psychiatric disorders such as depression and anxiety. Due to the nebulousness of fibromyalgia that engenders stigma and invalidation, psychiatrically related symptoms of hopelessness and loneliness are prevalent among patients suffering from it. These symptoms in turn can worsen outcomes and make this population vulnerable to suicidal ideation. Social support has been shown to improve physical and mental well-being in patients with fibromyalgia. Given that the primary purpose of social media is to promote social support, there has been increasing interest in harnessing social media as a therapeutic intervention. However, evidence for the therapeutic benefit of social media, particularly for loneliness mitigation and suicide prevention, is mixed. In the limited literature about fibromyalgia patients specifically, use of existing social media networks, such as Facebook and Instagram, has been shown to improve pain and depressive symptoms. The benefit of social media appears to derive from a sense of connectedness via (1) developing a sense of community among individuals with common experiences and (2) exchanging experiences, information, and support. Given the lack of research around the use of social media in fibromyalgia patients, this study aims to investigate whether social media tailored to fibromyalgia patients can improve physical and mental health. Specifically, participants were randomized to conditions of differing social media engagement (i.e. passively consuming information [TAU] vs. receiving specific user-generated content evaluated to be validating and supportive [e-TAU] vs. receiving this helpful content while participating in a support group [e-TAU+G]) to delineate how different aspects social media use contribute to connectedness and improved outcomes. This study is needed, as fibromyalgia patients are a group that would benefit most from an easily accessible and affordable modality that can bolster social support.

This study constitutes analysis of data collected by themighty.com. Themighty.com is a social media platform dedicated to promoting health and well-being. The platform features stories reflecting lived experience with physical and mental health challenges. In addition, themighty.com offers a peer-to-peer forum for users to solicit and receive support. From January to October 2023, themighty.com collected data to evaluate users' engagement with and benefits of their platform. The study collected data using a randomized control design (three arms) over an 18-week period before crossover. Participants were randomized using simple randomization. Condition assignment was not blinded. However, a cross-over strategy was employed, wherein participants originally assigned to the TAU condition were then allocated to the e-TAU+G condition after the initial 18-week trial.

This study's hypothesis is that the e-TAU+G arm would show greatest improvements in outcomes, followed by the e-TAU arm, with the TAU arm showing the least improvement.

Tipo di studio

Osservativo

Iscrizione (Effettivo)

1041

Contatti e Sedi

Questa sezione fornisce i recapiti di coloro che conducono lo studio e informazioni su dove viene condotto lo studio.

Luoghi di studio

  • Stati Uniti
    • New York
      • The Bronx, New York, Stati Uniti, 10461
        • Albert Einstein College of Medicine

Criteri di partecipazione

I ricercatori cercano persone che corrispondano a una certa descrizione, chiamata criteri di ammissibilità. Alcuni esempi di questi criteri sono le condizioni generali di salute di una persona o trattamenti precedenti.

Criteri di ammissibilità

Età idonea allo studio

  • Adulto
  • Adulto più anziano

Accetta volontari sani

No

Metodo di campionamento

Campione di probabilità

Popolazione di studio

Study participants were adults who can regularly access/use social media, who were recruited via online advertisements.

Descrizione

Inclusion Criteria:

  • 18 years of age or older
  • Can read and write English proficiently
  • Live in the USA
  • Carry a diagnosis of fibromyalgia

Exclusion Criteria:

  • Younger than 18-years-old
  • Cannot read or write English proficiently
  • Does not live in the U.S.
  • Does not carry fibromyalgia diagnosis

Piano di studio

Questa sezione fornisce i dettagli del piano di studio, compreso il modo in cui lo studio è progettato e ciò che lo studio sta misurando.

Come è strutturato lo studio?

Dettagli di progettazione

Coorti e interventi

Gruppo / Coorte
Intervento / Trattamento
Treatment as usual (TAU)
Participants used the platform as usual (e.g., log in, read stories).
Comportamentale: Social Media
Participants were invited to join a closed group to facilitate discussion about their experiences with fibromyalgia and offer social support.
Enhanced TAU (e-TAU)
Participants received specialized emails from the platform containing user-generated stories featuring lived experience with fibromyalgia that were identified as helpful for increasing social connectedness/support and hope, in addition to typical platform use.
Comportamentale: Social Media
Participants were invited to join a closed group to facilitate discussion about their experiences with fibromyalgia and offer social support.
Enhanced TAU + group (e-TAU+G)
In addition to receiving the specialized emails with supportive narratives, participants were invited to join a closed group of other people with fibromyalgia that would facilitate communication amongst members.
Comportamentale: Social Media
Participants were invited to join a closed group to facilitate discussion about their experiences with fibromyalgia and offer social support.

Cosa sta misurando lo studio?

Misure di risultato primarie

Misura del risultato
Misura Descrizione
Lasso di tempo
Perceived Shared Experiences
Lasso di tempo: Weeks 6, 12, and 18
Perceived shared experiences were assessed via online survey by asking participants the question, "In the past week, how much did you feel like you are not the only person living with your struggles?" Participants provided responses using a 7-item Likert scale ranging from 1 ("Definitely not the only one") to 7 ("Completely the only one"), such that lower scores were indicative of an increased sense of shared experiences and higher scores were indicative of a decreased sense of shared experiences. This survey was administered weekly during the trial.
Weeks 6, 12, and 18
Hopefulness/Hopelessness
Lasso di tempo: Weeks 6, 12, and 18
Hopefulness and hopelessness were assessed via online survey by asking participants the question, "In the past week, how much do you feel like the problems you are currently facing might get better in the future?" Participants provided responses using a 7-item Likert scale ranging from 1 ("Not at all") to 7 ("Definitely"), such that higher scores were indicative of increased feelings of hopefulness and lower scores were indicative of increased feelings of hopelessness. This survey was administered weekly during the trial.
Weeks 6, 12, and 18
Validation and Understanding
Lasso di tempo: Weeks 6, 12, and 18
Validation and feelings of being understood were assessed via online survey by asking participants the question, "In the past week, how understood did you feel by others?" Participants provided responses using a 7-item Likert scale ranging from 1 ("Not at all understood") to 7 ("Definitely understood"), such that higher scores were indicative of increased feelings of validation and understanding and lower scores were indicative of decreased feelings of validation and understanding. This survey was administered weekly during the trial.
Weeks 6, 12, and 18

Misure di risultato secondarie

Misura del risultato
Misura Descrizione
Lasso di tempo
Suicidal Ideation
Lasso di tempo: Weeks 6, 12, and 18
Suicidal ideation was assessed via online survey by asking participants the question, "In the past week, how often did you have thoughts of not wanting to be alive or of hurting yourself in some way?" Participants provided responses using a 7-item Likert scale ranging from 1 ("I didn't have these thoughts at all") to 7 ("Every day"), such that higher scores were indicative of increased thoughts of suicidal ideation and lower scores were indicative of decreased thoughts of suicidal ideation. Milestone surveys were administered at weeks 6, 12, and 18. Scores were summarized by study arm.
Weeks 6, 12, and 18
Depression
Lasso di tempo: Weeks 6, 12, and 18
Depression was assessed using the 9-item Patient Health Questionnaire (PHQ-9). The PHQ-9 is a standard measurement tool used for screening, diagnosing, monitoring and measuring the severity of depression. Participants were asked how often they had been bothered by symptoms like depressed mood, trouble sleeping, or low energy over the past two weeks. Each question is scored on a 4-point scale ranging from 0 ("Not at all") to 3 ("Nearly every day"), for an overall possible scoring range of 0-27, such that higher scores were indicative of increased depressive symptoms. Milestone surveys were administered at weeks 6, 12, and 18. Scores were summarized by study arm.
Weeks 6, 12, and 18
Anxiety
Lasso di tempo: Weeks 6, 12, and 18
Anxiety was assessed using the 7-item Generalized Anxiety Disorder-7 (GAD-7) scale. The GAD-7 is a self-assessment tool used to screen for and asses the severity of anxiety. Participants were asked how often they had been bothered by common symptoms of anxiety over the prior two week period. Each question is scored on a 4-point scale ranging from 0 ("Not at all") to 3 ("Nearly every day"), for an overall possible scoring range of 0-21, such that higher scores were indicative of increased anxiety symptoms. Milestone surveys were administered at weeks 6, 12, and 18. Scores were summarized by study arm.
Weeks 6, 12, and 18
Functional Impairment
Lasso di tempo: Weeks 6, 12, and 18
Functional impairment was assessed via online survey by asking participants the question, "In the past week, how often did your fibromyalgia symptoms get in the way of your goals?" Participants provided responses using a 7-item Likert scale ranging from 1 ("Not at all") to 7 ("Every day"), such that higher scores were indicative of increased functional impairment and lower scores were indicative of decreased functional impairment. Milestone surveys were administered at weeks 6, 12, and 18. Scores were summarized by study arm.
Weeks 6, 12, and 18

Altre misure di risultato

Misura del risultato
Misura Descrizione
Lasso di tempo
Perceived Burdensomeness and Thwarted Belongingness
Lasso di tempo: Administered weeks 6, 12, and 18
Perceived burdensomeness and Thwarted belongingness were assessed using the 15-item Interpersonal Needs Questionnaire (INQ-15). The INQ-15 is a widely used clinical assessment tool designed to evaluate two psychological constructs linked to suicide ideation: perceived burden and thwarted belonging. Perceived burdensomeness subscale items (questions 1-6) were rated on a scale ranging from 1 ("Not at all true") to 7 ("Very true"), yielding a range of 6-42. Thwarted belongingness subscale items (questions 7-15) were rated on a scale ranging from 1 ("Not at all true") to 7 ("Very true"), yielding a range of 9-63. A total perceive burden score was calculated by combining the two subscales, yielding an overall scoring range of 15-99, such that higher scores are indicative of increased perceived burden and thwarted belonging. Milestone surveys were administered at weeks 6, 12, and 18. Scores were summarized by study arm.
Administered weeks 6, 12, and 18
Post-Traumatic Stress Disorder (PTSD)
Lasso di tempo: Administered weeks 6, 12, and 18.
PTSD was assessed using the Short PTSD Rating Interview (SPRINT). SPRINT is an 8-item clinical assessment tool designed to quickly evaluate the core symptoms and severity of PTSD (intrusion, avoidance, numbing, arousal) along with somatic malaise, stress vulnerability, and role and social functional impairment. Participants provide responses to each of the 8 items based on their experiences over the past week using a 5-point scale ranging from 0 ("Not at all") to 4 ("Very much"), for an overall possible score of 0-32, such that higher scores are indicative of increased severity of PTSD symptoms. Milestone surveys were administered at weeks 6, 12, and 18. Scores were summarized by study arm.
Administered weeks 6, 12, and 18.

Collaboratori e investigatori

Qui è dove troverai le persone e le organizzazioni coinvolte in questo studio.

Sponsor

Albert Einstein College of Medicine

Investigatori

  • Investigatore principale: Peter Franz, PhD, Albert Einstein College of Medicine

Pubblicazioni e link utili

La persona responsabile dell'inserimento delle informazioni sullo studio fornisce volontariamente queste pubblicazioni. Questi possono riguardare qualsiasi cosa relativa allo studio.

Pubblicazioni generali

Studiare le date dei record

Queste date tengono traccia dell'avanzamento della registrazione dello studio e dell'invio dei risultati di sintesi a ClinicalTrials.gov. I record degli studi e i risultati riportati vengono esaminati dalla National Library of Medicine (NLM) per assicurarsi che soddisfino specifici standard di controllo della qualità prima di essere pubblicati sul sito Web pubblico.

Studia le date principali

Inizio studio (Effettivo)

19 gennaio 2023

Completamento primario (Effettivo)

31 ottobre 2023

Completamento dello studio (Effettivo)

31 ottobre 2023

Date di iscrizione allo studio

Primo inviato

15 luglio 2026

Primo inviato che soddisfa i criteri di controllo qualità

15 luglio 2026

Primo Inserito (Effettivo)

21 luglio 2026

Aggiornamenti dei record di studio

Ultimo aggiornamento pubblicato (Effettivo)

21 luglio 2026

Ultimo aggiornamento inviato che soddisfa i criteri QC

15 luglio 2026

Ultimo verificato

1 luglio 2026

Maggiori informazioni

Termini relativi a questo studio

Parole chiave

Termini MeSH pertinenti aggiuntivi

Altri numeri di identificazione dello studio

  • 2024-16294

Piano per i dati dei singoli partecipanti (IPD)

Hai intenzione di condividere i dati dei singoli partecipanti (IPD)?

INDECISO

Informazioni su farmaci e dispositivi, documenti di studio

Studia un prodotto farmaceutico regolamentato dalla FDA degli Stati Uniti

No

Studia un dispositivo regolamentato dalla FDA degli Stati Uniti

No

Queste informazioni sono state recuperate direttamente dal sito web clinicaltrials.gov senza alcuna modifica. In caso di richieste di modifica, rimozione o aggiornamento dei dettagli dello studio, contattare register@clinicaltrials.gov. Non appena verrà implementata una modifica su clinicaltrials.gov, questa verrà aggiornata automaticamente anche sul nostro sito web .

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