Facebook Support Group Research Articles

Facebook Support Groups for Pediatric Rare Diseases: Cross-Sectional Study to Investigate Opportunities, Limitations, and Privacy Concerns.

BackgroundBecause of the nature of rare diseases with affected individuals being widely geographically dispersed, finding an in-person/offline support group itself can be a challenge. Affected individuals therefore turn to social networking platforms such as Facebook for online support groups.ObjectiveWe aim to put into perspective the opportunities Facebook offers as a tool for pediatric rare disease support groups by investigating its use, advantages, and limitations including privacy concerns. We analyze group accessibility and usage, advantages specific to rare diseases, perceived privacy, and views on using Facebook for communication between health professionals and parents, pharmaceutical companies, and study recruitment.MethodsWe contacted 12 Facebook support groups for 12 respective rare diseases with pediatric onset and invited group members to participate in a cross-sectional online survey.ResultsOf 231 respondents, 87.0% (n=201) of respondents were female, 12.6% (n=29) were male, and 0.4% reported another sex (n=1). Respondents’ mean age was 41.56 years (SD 9.375); 91.3% (n=211) of respondents were parents (183 mothers, 27 fathers, 1 other sex); 59.7% (n=138) reported a self-initiated search for the Facebook group, 24.2% (n=56) received recommendations from their health professionals, and 12.6% (n=29) recommendations from someone else affected by the disease. On average, support group members visited Facebook at least once a day, visited and passively participated (read/liked posts) several times a week, and participated actively (commented/posted) once a month. As much as 79.2% (183/231) agreed that they would like to have health professionals as members of the respective Facebook group. Group members expressed more concern about privacy issues on Facebook in general than in their respective Facebook support groups, with concerns mostly related to Facebook itself and nongroup members.ConclusionsOur study confirmed that Facebook enhances support group accessibility for parents of children with rare diseases. Group participants perceive a reduction and elimination of distance, a common challenge in rare disease, and Facebook support groups create an environment of perceived privacy. The group’s privacy setting can be a critical factor for active support group participation. Sharing personal information and pictures on Facebook is very common among group participants, which shows the importance of discussing and protecting children’s privacy rights in this context.Trial RegistrationGerman Clinical Trials Register DRKS00016067; https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00016067

Could a handbook serve as a useful educational intervention in improving disease knowledge? A cross-sectional study among patients with hidradenitis suppurativa in Poland.

Hidradenitis suppurativa (HS) is a chronic, recurrent inflammatory skin disease characterized by the occurrence of severe, painful nodules, abscesses, and fistulas, most commonly found in the skin folds of the axilla, groin, gluteal, and perianal areas. The disease is of interest to many researchers, however, verified information for patients is still limited. To evaluate the baseline knowledge about acne inversa among patients suffering from the disease as well as to assess whether an educational intervention as a handbook can improve patients' knowledge of their illness. This research study was a cross-sectional survey conducted on HS Facebook support group. The respondents completed an anonymized questionnaire assessing their state of knowledge about acne inversa. After 1 month they were presented with a handbook. Thereafter the patients completed nearly the same anonymized questionnaire assessing the state of knowledge after reading the handbook. We enrolled 102 participants before (group A) and 30 participants after (group B) the educational intervention. The vast majority of the participants (83.3%) appraised the idea of preparing a handbook as 10 points. In both groups, respondents who were aware of their disease severity had significantly superior results than the participants who were not. After reading the handbook extensively, more patients assessed the state of their general HS knowledge as 'good' than before. Our study demonstrated that knowledge about HS among patients is still insufficient. Tools such as handbooks may prove useful in disseminating expertise and helping patients to understand their disease.

Infertility-related stress and quality of life in women experiencing concurrent reproductive trauma

Purpose To compare differences in infertility-related stress and quality of life (QOL) among women with infertility and concurrent reproductive trauma, defined as pregnancy loss during the infertility experience. Materials and Methods We used a descriptive, cross-sectional study design to recruit 205 women who underwent infertility treatments from infertility-related Facebook support groups and pages. Participants completed the Copenhagen Multi-center Psychosocial Infertility Fertility Problem Stress Scale, the Fertility Quality of Life tool, and a supplemental infertility demographic form. Statistical analyses included descriptive statistics, Pearson correlations, multivariate analysis of variance (MANOVA), univariate ANOVA, and eta squared. Statistical significance was evaluated using a Bonferroni adjusted alpha = .05/7 = .007. Results Participants with concurrent reproductive trauma had significantly higher social stress (p < .001), and significantly lower emotional QOL (p = .003) than women with infertility alone. Although not statistically significant, participants with concurrent reproductive trauma reported higher personal and marital stress scores and lower mind/body, relational, and social QOL scores than women with infertility alone. Conclusions Women with concurrent reproductive trauma may need psychological support to combat the emotional distress of pregnancy loss during infertility treatment.

Informing public health messages and strategies to raise awareness of pre-conception health: a public consultation

BackgroundDespite growing scientific and policy recognition that optimising health before a potential pregnancy (ie, pre-conception health) improves the lifelong health of reproductive-aged people and any children that they might have, public awareness of pre-conception health is lacking. To inform appropriate public health messages and strategies to increase public awareness, this project aimed to develop recommendations on language use, and identify and prioritise strategies. MethodsA public consultation was undertaken through semistructured online group discussions with people (of any gender) aged 18–50 years in England who were not currently expecting a child. Public contributors were recruited through patient and public involvement groups, Facebook support groups (eg, for people with fertility issues or chronic conditions), and an LGBTQ+ charity. The first round of discussions (Feb 4–March 25, 2021) explored public contributors' knowledge about pre-conception health, their recommendations on appropriate language for public health messages, and ideas on public health strategies. All contributors were invited for a second discussion round (May 24–28, 2021) to refine the language recommendations and prioritise the suggested strategies. Discussions were summarised based on notes taken by two researchers. Ethics approval was not required for this public consultation. Findings54 people joined the first discussion round. Of these, 36 participated in the second round (24 [67%] female, seven [19%] male, five [14%] transgender or non-binary; 13 [36%] from an ethnic minority background). Discussions confirmed a substantial lack of awareness of pre-conception health, but also revealed curiosity and an interest to learn more. Agreed language recommendations included avoiding unfamiliar terms without further explanation (eg, pre-conception health, medical terms); using language that is positive, encouraging, inclusive, and gender-neutral when possible; and using messages that are specific and realistic. School-based education and social media campaigns supported by a trusted source such as the NHS emerged as strategic priorities. InterpretationThis public consultation revealed a desire among diverse groups to learn about pre-conception health and normalise preparation for pregnancy. The views obtained were predominantly from public contributors living in the Southampton area, and did not include people of reproductive age younger than 18 years (ie, those aged 15–17 years). Raising public awareness about pre-conception health should begin in schools and will require adaptation of curricula, alongside development of public awareness campaigns, to reach all people across their reproductive years. Further research is needed to inform and develop these initiatives. FundingDAJMS is funded by the NIHR Southampton Biomedical Research Centre. The project was funded by the University of Southampton Public Engagement with Research Unit and Public Policy Southampton.

A Pilot Randomized Controlled Trial of a Fitbit- and Facebook-Based Physical Activity Intervention for Young Adult Cancer Survivors.

Purpose: Most young adult cancer survivors (YACS) do not meet physical activity (PA) guidelines. Although PA can improve health and quality of life (QOL), few randomized controlled trials (RCTs) of PA interventions for YACS exist. We conducted a pilot RCT to test feasibility of a PA intervention among YACS. Methods: We recruited 18-39-year-olds (≥1 and <5 years postcancer therapy) from Seattle Cancer Care Alliance. The 12-week intervention involved a wrist-worn PA-tracking device (Fitbit), a peer-based Facebook support group, step count goal setting, and a self-selected support "buddy." Controls received Fitbit only. Baseline assessments occurred before randomization; follow-up assessments occurred during intervention weeks 10-12. Feasibility criteria are listed below. Exploratory outcomes included PA, sedentary time (ST), QOL measures (e.g., fatigue), and self-determination theory (SDT) construct measures. Results: All feasibility criteria were met: We recruited 50 YACS, intervention participants wore the Fitbit on the majority of intervention days (82.9%), ≥75% of participants completed questionnaires at baseline (100%) and follow-up (93.9%). Exploratory analyses, adjusted for wave, accelerometer wear time, race, and income, showed significant group differences for change in ST (-52.4 vs. 2.5 minutes/day; p = 0.002) but no change in moderate-to-vigorous intensity PA (0.0 vs. -0.2 minutes/day; p = 0.40), comparing intervention participants to controls. The intervention (vs. control) group had a greater increase in fatigue interference (p = 0.03). No other significant differences in SDT or QOL measures were found. Conclusion: This Fitbit and Facebook-based PA intervention was feasible to YACS, with promising effects on reducing ST, and warrants a fully powered RCT. Clinical Trial Registration no.: NCT03233581.

Altered smell and taste: Anosmia, parosmia and the impact of long Covid-19.

BackgroundQualitative olfactory (smell) dysfunctions are a common side effect of post-viral illness and known to impact quality of life and health status. Evidence is emerging that taste and smell loss are common symptoms of Covid-19 that may emerge and persist long after initial infection. The aim of the present study was to document the impact of post Covid-19 alterations to taste and smell.MethodsWe conducted exploratory thematic analysis of user-generated text from 9000 users of the AbScent Covid-19 Smell and Taste Loss moderated Facebook support group from March 24 to 30th September 2020.ResultsParticipants reported difficulty explaining and managing an altered sense of taste and smell; a lack of interpersonal and professional explanation or support; altered eating; appetite loss, weight change; loss of pleasure in food, eating and social engagement; altered intimacy and an altered relationship to self and others.ConclusionsOur findings suggest altered taste and smell with Covid-19 may lead to severe disruption to daily living that impacts on psychological well-being, physical health, relationships and sense of self. More specifically, participants reported impacts that related to reduced desire and ability to eat and prepare food; weight gain, weight loss and nutritional insufficiency; emotional wellbeing; professional practice; intimacy and social bonding; and the disruption of people’s sense of reality and themselves. Our findings should inform further research and suggest areas for the training, assessment and treatment practices of health care professionals working with long Covid.

Mast cell activation symptoms are prevalent in Long-COVID

ObjectivesHyper-inflammation caused by COVID-19 may be mediated by mast cell activation (MCA) which has also been hypothesized to cause Long-COVID (LC) symptoms. We determined prevalence/severity of MCA symptoms in LC. MethodsAdults in LC-focused Facebook support groups were recruited for online assessment of symptoms before and after COVID-19. Questions included presence and severity of known MCA and LC symptoms and validated assessments of fatigue and quality of life. General population controls and mast cell activation syndrome (MCAS) patients were recruited for comparison if they were ≥18 years of age and never had overt COVID-19 symptoms. ResultsThere were 136 LC subjects (89.7% females, age 46.9 ±12.9 years), 136 controls (65.4% females, age 49.2 ±15.5), and 80 MCAS patients (85.0% females, age 47.7 ±16.4). Pre-COVID-19 LC subjects and controls had virtually identical MCA symptom and severity analysis. Post-COVID-19 LC subjects and MCAS patients prior to treatment had virtually identical MCA symptom and severity analysis. ConclusionsMCA symptoms were increased in LC and mimicked the symptoms and severity reported by patients who have MCAS. Increased activation of aberrant mast cells induced by SARS-CoV-2 infection by various mechanisms may underlie part of the pathophysiology of LC, possibly suggesting routes to effective therapy.

Leader behaviors in Facebook support groups: An exploratory study

Leader behaviors in Facebook support groups: An exploratory study

Women’s Use of Self-Care Interventions for Endometriosis Pain in the United States

ObjectiveTo identify self-care interventions women living in the United States are using to manage endometriosis-related pain, describe frequency of use, and determine perceived effectiveness. DesignMixed-methods design with an online survey. SettingA survey link was posted on endometriosis support group Facebook pages. ParticipantsThe online survey was completed by 98 women living in the United States who were members of Facebook support groups. MeasurementsQuantitative measures included demographic and health-related characteristics; self-care intervention frequency of use and perceived effectiveness; knowledge, confidence, and support managing endometriosis symptoms; pain intensity; and quality of life (QOL) operationalized with the Endometriosis Health Profile–30. Descriptive statistics and correlation coefficients were used to analyze data. Qualitative perspectives were captured through open-ended questions and analyzed for themes. ResultsWomen used an average of 5.8 self-care interventions more than once per week. Heat, rest, over-the-counter pain medications, and diet changes were perceived as most effective, with >75% reporting at least slight improvement. Frequent use of multiple strategies was significantly correlated with worse scores for pain-related QOL (p < .01), all other QOL dimensions (p < .01), and less confidence in one’s ability to control symptoms (p < .05). Endometriosis pain management perspectives showed three themes: Daily Struggle With Mental and Physical Health, Lack of Knowledge and Understanding From Health Care Providers, and Lack of Understanding From Everybody Else. ConclusionThese results strengthen evidence for the effectiveness of heat, rest, and dietary changes for endometriosis-related pain and underscore an individual’s desire for support and understanding from health care professionals, family, and friends. Nurses can provide evidence-based self-care intervention teaching to help mitigate endometriosis-related pain, prevent adverse effects, and assist individuals in discovering what works for them. It is imperative that nurses deliver and advocate for well-informed, empathetic, and supportive care from all health care professionals.

A hidden village: communicative functions of a Facebook support group for single mothers

ABSTRACT This study employs qualitative thematic analysis to examine the functions of posts within a naturally occurring, hidden private Facebook group for single mothers living in the same geographic area. Findings reveal themes of group cohesion, emotional expression, as well as sharing and requesting informational, tangible, and emotional support. The pattern of results carries implications for using protected social media communities to promote positive identification, empowerment, and wellbeing in individuals with stigmatized identities.

It takes a virtual village: Childbearing women's experience of a closed Facebook support group for mothers

BackgroundChildbearing women engage in large public pregnancy and parenting forums, primarily for the purpose of seeking information and advice. There is an absence of research related to women's engagement in closed and private online mothers’ groups. AimThe aim of this study was to explore the experiences of participation and support for members within a closed online mothers’ group. MethodA qualitative study using in-depth interviews. Reflexive thematic analysis was used to analyse the data. FindingsThis study demonstrated that a closed online mothers’ group enabled a group of childbearing women to overcome isolation and form sustained, evolving and supportive friendships within a small, private and trusted group. The technology allowed women to engage and share at a level much deeper than what they would in “real life”. The depth of sharing was enhanced in a closed online mothers’ group due to a smaller, private audience of trusted friends. Virtual support felt safer than face-to-face support as information could not impact one's real world reputation, and communication was able to be controlled. This was particularly helpful to women experiencing social difficulties or isolation. ConclusionThis study has provided a unique and rare insight into the private world of closed online mothers’ groups. As a virtual village, this closed group enabled childbearing women to form a small community with members sharing responsibility and working for the wellbeing and benefit of all. By encouraging, locating and establishing similar groups, maternity health professionals may assist women to access their own ‘virtual village’.

The use of Facebook in a community pharmacist-led weight management programme – a London-based proof of concept study

IntroductionIn the United Kingdom (UK), 63% of adults are overweight,(1) costing the NHS £6.1 billion/year. With the public using digital technology over healthcare professionals (HCPs) for health advice, this warrants an investigation of technology use in community pharmacy, given its previous successful use.(2)AimTo determine the feasibility and perceptions of a community pharmacist (CP)-led weight management programme (WMP), enhanced by a Facebook support group (FSG).MethodsA proof of concept study was conducted between January-March 2020. Recruitment was via a pharmacy, the university and a community Facebook group. Inclusion criteria: over 18 years; overweight; no medical conditions. Participants attended face-to-face meetings (ftf) with a CP and final year pharmacy student (PS) on two occasions (0 (baseline) and 4 weeks). At baseline, participants were given the NHS weight loss programme and set weight loss goals. During ftf, participants had height, weight, and waist circumference (WC) measurements by a CP/PS and discussed eating habits, exercise and alcohol. In between ftf, participants accessed the FSG (created (December 2019) and moderated by a CP). Here, they received posts about diet, exercise and motivation. Participants were to have their measurements taken ftf at 8-weeks, however, COVID-19 meant participants had to self-declare these via video call. Following the 8-week programme, participants completed a 4-section survey about their experience (signing up to the service; comparison to previous weight loss attempts; the FSG and overall perceptions). Question types included multiple choice, Likert scale and free text comments. Data were analysed in Excel (Microsoft Corporation 2016) with changes in height, weight, waist circumference, alcohol and exercise being calculated.ResultsFifty-five participants were recruited. 18 were lost to follow-up, most (n=12/18) citing COVID-19. Of the 37 participants remaining (70.3% female, mean age=37 years), 22 were obese, the rest overweight. Mean weight loss, mean percentage weight loss and mean WC reduction at 4-weeks was 1.6 kg (SD+/- 1.7 kg), 1.8% (SD+/- 1.9%) and 2 cm (SD+/- 1.96 cm) respectively. At week 8 measurements were self-declared. Mean weight loss at 8-weeks from baseline was 2.7 kg (SD +/- 2.6 kg) and mean percentage weight loss was 3% (SD+/- 3%). Only five participants’ self-declared WC measurements at 8-weeks with mean reduction being 3.6 cm. Five participants moved to healthier BMI classifications by week 8. All participants accessed the FSG at least weekly with 13 accessing it daily. Diet posts were the most popular (n=20/37). Participants learned about portion control and increasing fruits/vegetables intake. All participants would recommend the programme to their friends/family.ConclusionAn 8-week CPWMP, enhanced with FSG, supported participants to lose a mean of 3% body weight. Participants accessed the page regularly and were positive about its usefulness. One limitation was that the COVID-19 lockdown prevented the 8-week ftf, therefore, self-declared measurements were used. The pandemic has highlighted the importance of pharmacy embracing technology for service delivery, particularly when in-person contact is limited. The implication of this study is that it provides proof that the concept of digital service delivery could work in practice.

“This New Chapter of Life”: Content Analysis of Facebook Posts After Traumatic Brachial Plexus Injury

Background: After traumatic brachial plexus injuries (BPI), the sudden loss of physical function is often accompanied by psychological distress. Given the complex nature and relative infrequency of the injury, BPI patients will often use online resources for information about their injury as well as emotional support. Questions/Purpose: Recognizing the influence of social media, we sought to search a popular social media platform to identify challenges faced by BPI patients and strategies used to overcome these challenges. Methods: We searched "traumatic brachial plexus injury" on Facebook and selected the 2 most popular BPI support groups. We collected posts regarding traumatic BPI from November 1, 2018 through November 1, 2019. We performed inductive and deductive thematic analysis of the posts to identify recurring topics, knowledge gaps, and peer interaction dynamics. Results: We analyzed 7694 posts from the 2 Facebook support groups. The following themes emerged: (1) BPI patients express discontent regarding the inability to use their arm and the slow or stagnant pace of recovery; (2) BPI patients are frustrated over their inability to retain their preinjury livelihood; and (3) BPI patients emphasize that acceptance and moving on are key components of adjustment to their condition. Some patients described the role of limb amputation in achieving these goals. Conclusions: Our analysis demonstrates the areas in which BPI patients are in need of emotional support. Adjustment to BPI might be facilitated through multidisciplinary care that addresses emotional aspects of recovery and emphasizes self-management skills, in addition to the traditional focus on physical function.

Assessment of Selected Aspects of the Quality of Life of Children with Type 1 Diabetes Mellitus in Poland.

Type 1 diabetes mellitus (T1D) is, next to obesity and asthma, the most common chronic disease in children in Poland. T1D is not only a medical challenge, but it also affects all areas of a sick child’s life and family functionality. New forms of therapy facilitate the daily management of the disease, but their availability is limited and partly dependent on socioeconomic status. This study aimed to assess the incidence and interrelationships between the child’s health condition and the applied therapy model, and selected aspects of the child’s family functionality and access to health and care services. The survey involved 206 child and youth caregivers with T1D who are members of Facebook support groups. The analysis of the obtained results revealed the existence of links between family income level and the type of insulin therapy applied. Children from families with a better financial situation (subjective and objective) were more likely to have additional medical consultations and make more frequent control visits. In families with a higher level of income, the T1D-induced restriction of child activity was less frequent. Living outside of urban centers was associated with a reduced availability of care or educational facilities adapted to take care of a child with T1D. No statistically significant correlations were observed between demographic and economic factors and the child’s health status expressed by the occurrence of complications. The incidence of the latter, however, affected the child’s family situation.

Infertility Stress, Cortisol, Coping, and Quality of Life in U.S. Women Who Undergo Infertility Treatments

ObjectiveTo examine relationships between infertility-related stress (IRS), coping, and quality of life (QOL) in U.S. women who undergo infertility treatments and to examine relationships among hair cortisol, IRS, coping, and QOL in a small subsample. DesignDescriptive correlational cross-sectional survey. SettingInfertility-related Facebook support groups and Web pages. ParticipantsA total of 230 U.S. women between 18 and 55 years old who underwent infertility treatments. We collected root hair samples for cortisol analysis from a subsample of 37 participants. MethodsParticipants completed the Copenhagen Multi-centre Psychosocial Infertility Fertility Problem Stress Scales (Personal, Marital, and Social), Copenhagen Multi-centre Psychosocial Infertility Coping Strategies Scales (Active-Avoidance, Passive-Avoidance, Active-Confronting, and Meaning-Based), Fertility Quality of Life scales (Emotional, Mind/Body, Relational, Social, and total QOL), and a demographic and supplemental infertility questionnaire. We used descriptive statistics, correlation, and hierarchic regression for data analysis. We mailed subsample participants instructions and materials to supply a 3-cm hair sample for cortisol analysis by an independent laboratory and a stamped envelope to return the materials. ResultsHigher stress scores were associated with more active-avoidance coping, less meaning-based coping, and lower QOL. Coping explained 40% of the variance in QOL. After controlling for coping strategies, stress explained another 20% of the variance in QOL. Hair cortisol levels for most participants were low and negatively correlated to stress, especially marital stress, and positively correlated to QOL. ConclusionWomen with infertility with high levels of IRS tended to use active-avoidance coping and had lower QOL. Hypocortisolism was prevalent in the subsample and warrants further exploration.

Effects of Fourth-Degree Perineal Lacerations on Women’s Physical and Mental Health

ObjectiveTo describe the physical and emotional effects of fourth-degree perineal lacerations that occur during childbirth. DesignDescriptive phenomenology. SettingInternet survey. ParticipantsEighteen women from the United States, the United Kingdom, Australia, and Canada who sustained fourth-degree perineal lacerations during childbirth. MethodsWomen were recruited from the Facebook support group Mothers With 4th Degree Tears. Participants were asked to describe the physical and emotional effects of these severe birth injuries on their daily lives. I analyzed these data using Colaizzi’s method for phenomenological analysis. ResultsThe devastating effects of these birth-related injuries permeated all aspects of the lives of participants. Participants did not receive adequate information about their perineal lacerations, and clinicians often dismissed their concerns. Some participants struggled with postpartum depression and posttraumatic stress disorder. I identified seven themes that described the effects of fourth-degree perineal lacerations: Why Wasn’t I Informed I Had This Injury?; The Unthinkable: Fecal Incontinence and So Much More; It Has Cost Me So Much; Seeking Relief: Enduring Surgery After Surgery; Why Didn’t Anyone Ask Me About My Mental Health?; To Have More Children, That Is The Question; And Are there Any Positives In All Of This? ConclusionWomen need information to prepare for recovery from their severe perineal injuries related to what to expect, how to care for themselves, and what resources are available. Clinicians have a responsibility to provide a caring environment in which women feel safe to disclose any problems they are experiencing as a result of their perineal injuries. Little, if any, attention is focused on women’s mental health by clinicians or researchers as women struggle with the aftermath of fourth-degree perineal lacerations.

Facebook Support Groups for Rare Pediatric Diseases: Quantitative Analysis.

BackgroundLoneliness, social isolation, and feeling disconnected from society are commonly experienced by parents of children with rare diseases and are, among others, important reasons for special supportive care needs. Social networking platforms are increasingly used for health communication, information exchange, and support. In the field of rare pediatric diseases, qualitative studies have shown that Facebook online support groups are utilized by and beneficial for persons affected by rare pediatric diseases. Nonetheless, the extent of this usage has not been investigated.ObjectiveThis study aims to provide a comprehensive quantitative analysis of the extent of Facebook usage as a tool for rare pediatric disease support groups and to explore factors that influence a disease’s representation on Facebook. These results potentially offer important insights for future public health initiatives and give direction to further research that can give much needed support to parents of children with rare diseases.MethodsWe determined rare pediatric diseases using the inventory of the online portal Orphanet. Facebook support groups were identified by searching 5 synonymous disease descriptions using the group category search bar. Disease- and group-describing parameters were statistically analyzed using standard descriptive statistical methods.Results6398 Facebook support groups, representing 826 diseases (19.5% of all searched diseases), were found. 69% are private groups. Group type, size, activity (sum of posts, comments, and reactions calculated by Facebook), new memberships, and language varied largely between groups (member count: minimum 1, maximum 23,414; activity last 30 days: minimum 0, maximum 3606). The highest percentage of awareness and information groups was found for teratogenic diseases (18/68, 26%). The odds of finding a Facebook group increased according to the level of information available about the disease: known prevalence (odds ratio [OR] 3.98, 95% CI 3.39-4.66, P<.001), known disease type (OR 3.15, 95% CI 2.70-3.68, P<.001), and known inheritance mode (OR 2.06, 95% CI 1.68-2.52, P<.001) were all associated with higher odds of finding a Facebook group, as was dominant compared to nondominant inheritance (OR 2.05, 95% CI 1.74-3.42, P<.001). The number of groups per disease increased with higher prevalence.ConclusionsFacebook is widely used as a tool for support groups for rare pediatric diseases and continues to be relevant. Two-thirds of the groups are private groups, indicating group participants’ need for privacy, which should be further explored. The advantages and limitations of Facebook as a tool for support groups in the field of rare diseases should be further investigated as it will allow health professionals to use Facebook more meaningfully in their counseling and guidance of affected individuals and their family members.

“Pill Pushers and CBD Oil”—A Thematic Analysis of Social Media Interactions About Pain After Traumatic Brachial Plexus Injury

PurposeBrachial plexus injury (BPI) patients use on-line groups for peer support, often seeking information from Facebook groups devoted to BPI. We hypothesized that a qualitative thematic analysis of posts from BPI Facebook groups would demonstrate the areas in which patients were seeking information regarding treatment of BPI and reveal potential sources of misinformation that patients may encounter.MethodsWe identified the 2 most popular public Facebook groups for BPI by searching key words “traumatic brachial plexus injury.” We selected posts containing comments regarding BPI from November 1, 2018 through October 31, 2019. We excluded posts regarding brachial plexus birth injury. We used iterative inductive and deductive thematic analysis for the qualitative data to identify recurring topics, knowledge gaps, potential roles of patient educational interventions, and patient interaction dynamics. Two investigators independently coded all posts and resolved discrepancies by discussion.ResultsA total of 7,694 posts from 2 leading Facebook support groups were analyzed. Three themes emerged: (1) When discussing pain management, there was recurring anti-opioid sentiment. Posters who currently used opioids or supported those who did discussed perceived effects of the opioid epidemic on their treatment, on their relationships with care providers, and on availability of the medication. (2) Posters advocated for alternatives to traditional approaches to pain management, referring to prescribers as pill pushers and touting cannabinoids as a safer and more effective replacement. (3) There was strong anti-gabapentinoid sentiment owing to reported adverse effects and a perceived lack of efficacy, despite its role as a first-line treatment for neuropathic pain.ConclusionsExamination of posts from Facebook support groups for BPI revealed recurring themes, questions, misinformation, and opinions from posters with regard to treatment of neuropathic pain. These findings can help clinicians who care for BPI patients identify areas to focus on during patient encounters to address neuropathic pain that commonly occurs with BPI.Clinical relevanceBrachial plexus injury surgeons should be aware of information, misinformation, and opinions on social media, because these may influence patient–surgeon interactions.

Alleviating and exacerbating foods in hidradenitis suppurativa.

While dietary triggers have been investigated in acne and other inflammatory follicular dermatoses, there is a paucity of data on diet and hidradenitis suppurativa (HS). We sought to identify exacerbating and alleviating foods in HS patients. An anonymous survey was distributed via HS Facebook support groups and in person at HS specialty clinics. Participants were asked to select all that apply from a list to indicate foods that worsen and make HS better including sweet foods, breads and pasta, red meat, chicken, fish, canned foods, fruits, vegetables, dairy, high-fat foods, I do not know, and no. Only 12.0% (n = 89/744) identified alleviating foods while 32.6% (n = 237/728) identified HS-symptom-exacerbating foods. The most commonly reported exacerbating foods were sweets (67.9%), bread/pasta/rice (51.1%), dairy (50.6%), and high-fat foods (44.2%). The most commonly reported alleviating foods included vegetables (78.7%), fruit (56.2%), chicken (51.7%), and fish (42.7%). Further studies are required to evaluate the mechanistic links between diet and HS. HS patients may benefit from receiving dietary counseling as part of a comprehensive HS management plan.

P61 Patient perspectives on switching to an infliximab biosimilar in paediatric inflammatory bowel disease (PIBD)

AimTo establish patient perspectives on switching to an infliximab biosimilar, which will enable the PIBD team to improve patient experience during future biosimilar switches.MethodsFamilies of patients receiving treatment with an Infliximab biosimilar (Remsima®) 2 years after switching from the originator (Remicade®) were selected from the active patient database for telephone interview. One family who chose not to switch was also included for interview. A 5-question interview was prepared, which asked parents to rate their overall experience according to a satisfaction rating scale from 1–5. Parents were asked about their knowledge of reasons for switching, if they needed to look up additional information resources and, finally, ways to improve the switching process.Results18 patients were identified, 16 parents were available for interview. 13 parents gave overall positive feedback with satisfaction scores of 4 or 5 on the numerical satisfaction scale. 3 parents were dissatisfied with the switching process, giving scores of 0, 1 and 3. This resulted in an average satisfaction score of 4.1. The majority of satisfied parents had little knowledge of the switch, not remembering details and indicating the switch was best performed this way. Nonetheless, most recognised costs as the reason for switching. The majority of parents did not need to look up additional information resources, 2 parents named The Crohn’s and Colitis Charity and Facebook support groups as useful resources. Two dissatisfied patients requested to switch back to Remicade® therapy due to side effects. The family of the patient who chose not to switch made this decision because Remsima® was not yet available in the United States, where they also received treatment.ConclusionBiosimilar biologics continue to be approved by the EMA as originators come off patent. Efficacy of infliximab biosimilars in paediatric IBD patients is extrapolated from adult rheumatology data, with limited long term outcome data.1 2 Successful switches for NHS trusts lead to financial benefits; these savings allow for NHS investment to enable more patients to be treated.3Patient autonomy and, in paediatrics, parental views must be respected during this switching process. The majority of interviews with parents were positive, re-affirming the process of this switch. Parental perceptions of side effects attributed to Remicade® highlight the importance of discussing realistic outcomes of therapy with both the originator and biosimilar. When questioned, the parent who refused to switch explained that they did not have faith in the efficacy of the biosimilar and had major concerns of treatment failure. A fear of treatment failure may be described as a ‘nocebo’ effect 4 which hypothesises that negative attitudes incur less effective results. Increasing our awareness of patient perceptions on switching biosimilars and monitoring reasons for switch failure will better inform us going forward with future biologic switches.ReferencesDanese S, Fiorino G, Raine T, et al. ECCO position statement on the use of biosimilars for inflammatory bowel disease—an update. J Crohn’s Colitis 2017;11:26–34.de Ridder L, Waterman M, Turner D, et al. Use of biosimilars in paediatric inflammatory bowel disease. J Pediatr Gastroenterol Nutr 2015;61:503–508.Healy M, Crook J, Chavda C, et al. P35 An experience of switching paediatric inflammatory bowel disease patients on infliximab therapy to the biosimilar ‘remsima.’Arch Dis Child 2018;103:e1.39–e1.Ordinet J, Day C, Cruz J, et al. The biosimilar nocebo effect? A systematic review of double-blinded versus open-label studies. J Manag Care Spec Pharm 2018;24:952–959.