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Social Media Connectedness in Fibromyalgia

15. července 2026 aktualizováno: 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.

Přehled studie

Postavení

Dokončeno

Podmínky

Intervence / Léčba

Detailní popis

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.

Typ studie

Pozorovací

Zápis (Aktuální)

1041

Kontakty a umístění

Tato část poskytuje kontaktní údaje pro ty, kteří studii provádějí, a informace o tom, kde se tato studie provádí.

Studijní místa

  • Spojené státy
    • New York
      • The Bronx, New York, Spojené státy, 10461
        • Albert Einstein College of Medicine

Kritéria účasti

Výzkumníci hledají lidi, kteří odpovídají určitému popisu, kterému se říká kritéria způsobilosti. Některé příklady těchto kritérií jsou celkový zdravotní stav osoby nebo předchozí léčba.

Kritéria způsobilosti

Věk způsobilý ke studiu

  • Dospělý
  • Starší dospělý

Přijímá zdravé dobrovolníky

Ne

Metoda odběru vzorků

Ukázka pravděpodobnosti

Studijní populace

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

Popis

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

Studijní plán

Tato část poskytuje podrobnosti o studijním plánu, včetně toho, jak je studie navržena a co studie měří.

Jak je studie koncipována?

Detaily designu

Kohorty a intervence

Skupina / kohorta
Intervence / Léčba
Treatment as usual (TAU)
Participants used the platform as usual (e.g., log in, read stories).
Behaviorální: 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.
Behaviorální: 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.
Behaviorální: Social Media
Participants were invited to join a closed group to facilitate discussion about their experiences with fibromyalgia and offer social support.

Co je měření studie?

Primární výstupní opatření

Měření výsledku
Popis opatření
Časové okno
Perceived Shared Experiences
Časové okno: 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
Časové okno: 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
Časové okno: 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

Sekundární výstupní opatření

Měření výsledku
Popis opatření
Časové okno
Suicidal Ideation
Časové okno: 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
Časové okno: 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
Časové okno: 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
Časové okno: 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

Další výstupní opatření

Měření výsledku
Popis opatření
Časové okno
Perceived Burdensomeness and Thwarted Belongingness
Časové okno: 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)
Časové okno: 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.

Spolupracovníci a vyšetřovatelé

Zde najdete lidi a organizace zapojené do této studie.

Sponzor

Albert Einstein College of Medicine

Vyšetřovatelé

  • Vrchní vyšetřovatel: Peter Franz, PhD, Albert Einstein College of Medicine

Publikace a užitečné odkazy

Osoba odpovědná za zadávání informací o studiu tyto publikace poskytuje dobrovolně. Mohou se týkat čehokoli, co souvisí se studiem.

Obecné publikace

Termíny studijních záznamů

Tato data sledují průběh záznamů studie a předkládání souhrnných výsledků na ClinicalTrials.gov. Záznamy ze studií a hlášené výsledky jsou před zveřejněním na veřejné webové stránce přezkoumány Národní lékařskou knihovnou (NLM), aby se ujistily, že splňují specifické standardy kontroly kvality.

Hlavní termíny studia

Začátek studia (Aktuální)

19. ledna 2023

Primární dokončení (Aktuální)

31. října 2023

Dokončení studie (Aktuální)

31. října 2023

Termíny zápisu do studia

První předloženo

15. července 2026

První předloženo, které splnilo kritéria kontroly kvality

15. července 2026

První zveřejněno (Aktuální)

21. července 2026

Aktualizace studijních záznamů

Poslední zveřejněná aktualizace (Aktuální)

21. července 2026

Odeslaná poslední aktualizace, která splnila kritéria kontroly kvality

15. července 2026

Naposledy ověřeno

1. července 2026

Více informací

Termíny související s touto studií

Klíčová slova

Další relevantní podmínky MeSH

Další identifikační čísla studie

  • 2024-16294

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Studuje lékový produkt regulovaný americkým FDA

Ne

Studuje produkt zařízení regulovaný americkým úřadem FDA

Ne

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