Facebook Groups Can Provide Support for Patients with Rare Diseases and Reveal Truths About the Secret Lives of Patients

Gaddy, Anna; Topf, Joel Michels

doi:10.1016/j.ekir.2021.03.890

Cited by 6 publications

(4 citation statements)

References 8 publications

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“…While there is an increased interest in researching health related quality of life in MG patients [25], the impact of peer-to-peer support has, to date, been largely unaddressed within the scienti c literature on the subject. In focusing on such, this study contributes to a growing body of literature investigating online health communities targeted at patient populations with speci c conditions including breast cancer [26], diabetes [27], stroke [28,29] and numerous rare diseases [1,3,18,30,31]: the results of which have shown that social media is an important information resource for many in the affected populations MG is no different in this regard. The high need for information amongst those affected by MG was recently demonstrated in a study analysing emails written to a specialised treatment centre and patient organisation body [32] and it appears that this need is not restricted to these channels.…”

Section: Discussionmentioning

confidence: 99%

Myasthenia Gravis: Utilising cross-platform quantitative content analysis to uncover and validate unmet needs

Legg,

Meisel,

Stein

et al. 2024

Preprint

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Background and Aims: Recent years have seen a rapid growth in the number of online health communities targeted at patients with long-term conditions. Myasthenia Gravis (MG) is a rare neurological disease for which such communities have not been analysed before. The aim of this study was to better understand the needs of the MG population through the collation and categorisation of questions that users of MG social media were asking fellow users on these platforms. Methodology: Systematic observation of four MG Facebook groups was conducted over a two-month period. Groups were selected for analysis based on the following systematic criteria: Language (English), Membership (≥ 5000 members), group activity (≥ 2 posts per week), target audience (general MG population: no specified sub-group e.g. country or gender based) and researcher engagement with group administrators. The study protocol was reviewed by the institutional review board of the Charité – Universitätsmedizin Berlin (EA2/106/22). During the observation period, data was extracted from individual posts featuring questions made across each group using a systematic and objective coding scheme. All data points were coded directly from the source and collated into an SPSS database (IBM SPSS V.27, SPSS). Absolute and relative frequencies were calculated for categorical variables and proportions were compared across groups to validate the credibility and relevance of different requests. Results: Of the 2062 posts observed (N = 2062), 1392 featured questions (n = 1392). Questions were asked by 787 unique users: 531 were identified as one-time users (67%) and 256 were identified as repeat users (33%). 656 users were classified as diagnosed (83%), 61 as seeking diagnosis (8%), 69 as family and/or friends (9%) and 1 as other (< 0%). Eight unique categories of questions were observed including MG treatment (31%), Symptoms (19%), Living with MG (12%), Diagnosis (10%), non-MG medication (11%), Tests (8%), Location (4%) and Other (4%). Conclusions: Members of the MG population make active use of online health communities to seek and discuss practical information concerning various aspects of the disease, its diagnosis and care. The openness and willingness of the sample population to share sensitive medical information shows a high need for information not entirely catered to by the medical profession.

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Section: Discussionmentioning

confidence: 99%

Myasthenia Gravis: Utilising cross-platform quantitative content analysis to uncover and validate unmet needs

Legg,

Meisel,

Stein

et al. 2024

Preprint

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“…As demonstrated in another study, social media groups may also be of support to patients with rare diseases. 21 …”

Section: Discussionmentioning

confidence: 99%

Living with Atypical Hemolytic Uremic Syndrome in the Netherlands: Patient and Family Perspective

Bouwmeester,

Engel,

Altena

et al. 2024

Kidney International Reports

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“…Facebook groups have brought communities together, and like-minded people have been provided with a space to network and interact. Many people use Facebook groups as online support groups [ 22 , 23 ]. This is a particularly helpful feature that researchers should use, especially if recruiting from a particular demographic.…”

Section: Methodsmentioning

confidence: 99%

Effectiveness of Facebook Groups and Pages on Participant Recruitment Into a Randomized Controlled Trial During the COVID-19 Pandemic: Descriptive Study

Wong,

Lau,

Man

et al. 2023

J Med Internet Res

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Background In response to the unprecedented challenges posed by the COVID-19 pandemic, conventional recruitment approaches were halted, causing the suspension of numerous clinical trials. Previously, Facebook (Meta Platforms, Inc) has emerged as a promising tool for augmenting participant recruitment. While previous research has explored the use of Facebook for surveys and qualitative studies, its potential for recruiting participants into randomized controlled trials (RCTs) remains underexplored. Objective This study aimed to comprehensively examine the effectiveness of using Facebook groups and pages to facilitate participant recruitment during the COVID-19 pandemic for an RCT on the effectiveness of a remote parenting program, 1-2-3 Magic, in families who have children with attention-deficit/hyperactivity disorder (ADHD) in the United Kingdom. Methods We disseminated 5 Facebook posts with an attached digital flyer across 4 prominent ADHD UK support groups and pages run by the National Attention Deficit Disorder Information and Support Services, reaching an audience of around 16,000 individuals over 2 months (January 7 to March 4, 2022). Eligibility criteria mandated participants to be parents or caregivers of a child with diagnosed ADHD aged 12 years or younger, be residing in the United Kingdom, have access to stable internet, and have a device with the Zoom (Zoom Video Communications) app. Participants were required to have never attended 1-2-3 Magic training previously. Prospective participants expressed their interest through Microsoft Forms (Microsoft Corporation). The trial aimed to recruit 84 parents. It is important to note that the term “parent” or “caregiver” in the RCT and in this study within a trial refers to anybody who has legal responsibility for the child. Results Overall, 478 individuals registered their interest through Microsoft Forms within the stipulated 2-month window. After the eligibility check, 135 participants were contacted for a baseline meeting through Zoom. The first 84 participants who attended a baseline meeting and returned a completed consent form were enrolled. Subsequently, another 16 participants were added, resulting in a final sample of 100 participants. This recruitment strategy incurred negligible expenses and demanded minimal human resources. The approach yielded favorable outcomes by efficiently attracting eligible participants in a condensed time frame, transcending geographical barriers throughout the United Kingdom, which would have been tedious to achieve through traditional recruitment methods. Conclusions Our experience demonstrated that digital flyers posted in the targeted Facebook groups were a cost-effective and quick method for recruiting for an RCT, which opened during the COVID-19 pandemic when lockdown restrictions were in place in the United Kingdom. Trialists should consider this low-cost recruitment intervention for trials going forward, and in the case of a global pandemic, this novel recruitment method enabled the trial to continue where many have failed. Trial Registration International Standard Randomized Controlled Trial Number (ISRCTN) 15281572; https://www.isrctn.com/ISRCTN15281572

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Facebook Groups Can Provide Support for Patients with Rare Diseases and Reveal Truths About the Secret Lives of Patients

Cited by 6 publications

References 8 publications

Myasthenia Gravis: Utilising cross-platform quantitative content analysis to uncover and validate unmet needs

Myasthenia Gravis: Utilising cross-platform quantitative content analysis to uncover and validate unmet needs

Living with Atypical Hemolytic Uremic Syndrome in the Netherlands: Patient and Family Perspective

Effectiveness of Facebook Groups and Pages on Participant Recruitment Into a Randomized Controlled Trial During the COVID-19 Pandemic: Descriptive Study

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