Hashing out current social media use in eosinophilic esophagitis.

BACKGROUND: Patients affected by chronic illnesses have increasingly turned to social media to gather disease-related information and connect with other patients. Eosinophilic esophagitis (EoE) is a chronic disease with rapidly evolving management options. The aims of this study are to describe the current use of social media in EoE patients and caregivers, evaluate whether use of social media to learn about EoE is associated with higher medical knowledge of this disease, and evaluate social media factors that could result in improved patient and caregiver disease understanding. METHODS: We surveyed individuals 18 years or older in July 2020 who identified as either having EoE, or as being a caregiver for someone with EoE, through an invitation link sent to email subscribers of the American Partnership for Eosinophilic Disorders. RESULTS: Of the 212 survey responders, 82.5% used social media to learn about EoE. Caregivers were more likely to use social media than patients (OR 2.30, 95% CI 1.11-4.76). Social media use was not associated with higher knowledge of EoE. Distrust of posted content was the largest barrier to use and 87.7% of responders believed that physician contribution to posts would enhance the quality of information. CONCLUSIONS: In one of the first known studies to evaluate use of social media in the context of EoE, we found that a majority of patient and caregiver respondents use social media to learn about EoE. This highlights the potential opportunity to leverage social media to provide current and accurate EoE educational content for patients and caregivers.

The Psychosocial Impact of Food Protein-Induced Enterocolitis Syndrome.

BACKGROUND: Little is known about the psychosocial impact of food protein-induced enterocolitis syndrome (FPIES). OBJECTIVE: To characterize quality of life, stress, worry, anxiety, and self-efficacy in caregivers of children with FPIES and affected children, and determine risk factors for increased psychosocial burden. METHODS: Surveys completed by caregiver-members of the International FPIES Association at a conference (n = 42) and online (n = 368) were analyzed. RESULTS: There was significant burden, stress, worry, and anxiety among caregivers. There was a positive correlation among Food Allergy Quality of Life-Parental Burden, Perceived Stress Scale-10, Penn State Worry Questionnaire, and Beck Anxiety Inventory scores, and these were negatively associated with Food Allergy Self-Efficacy for Parents (FASE-P) scores. Lower income was associated with poorer caregiver health-related quality of life (HRQoL) (P = .039) and lower FASE-P (P = .028). Greater number of food groups avoided correlated moderately with poorer HRQoL (r = 0.386; P < .001), higher anxiety among preschoolers (r = 0.262; P = .013) and parents (r = 0.594, P = .025). Avoiding cow's milk due to FPIES was associated with poorer caregiver HRQoL (P < .001), higher stress (P = .001), and lower FASE-P (P = .013). Caregivers whose child was not attending daycare/school due to FPIES had poorer HRQoL (P < .001), higher stress (P < .014), and worry (P = .004). Compared with published cohorts of caregivers of children with IgE-mediated food allergy, the burden of FPIES on caregivers was significantly higher (mean = 3.4 vs 3.0; P < .001) and self-efficacy was significantly lower (mean = 63.9 vs 76.1; P < .001). CONCLUSIONS: There is increased stress, worry, anxiety, and reduced HRQoL and self-efficacy among caregivers of children with FPIES and increased general anxiety among preschoolers. Additional research is needed to inform effective psychosocial interventions.

A Slice of Food Protein-Induced Enterocolitis Syndrome (FPIES): Insights from 441 Children with FPIES as Provided by Caregivers in the International FPIES Association.

BACKGROUND: Food protein-induced enterocolitis syndrome (FPIES) is a non-IgE-mediated gastrointestinal food allergy. There is little known about the demographic characteristics, food triggers, and risk factors for FPIES. OBJECTIVE: To characterize the demographic characteristics, food triggers, risk factors, and management in children with FPIES. METHODS: We retrospectively analyzed surveys completed by 410 caregiver-members of the International FPIES Association, both at a conference for families affected by FPIES and online. RESULTS: Most of the children were female (50.7%), white (86.2%), and atopic (54.8%), with a median age of 2 years (ranging from 2 months to 19 years). The most common food groups avoided were grains (60.0%), cow's milk (52.4%), vegetables (42.7%), and fruits (38.0%). Avocado was the most commonly avoided fruit. Avoiding avocado was associated with increased likelihood of avoiding banana (P < .001). Of these children, 69.4% avoided at least 2 food groups because of FPIES, and 20.3% had a first-degree relative with FPIES. Having a first-degree relative with FPIES was associated with increased likelihood of avoiding multiple food groups (P = .035). CONCLUSIONS: The most common food group avoided was grains, consistent with recent literature. Avocado avoidance was higher than previously reported, and this is the first report of an association between avocado and banana avoidance in FPIES. Avoiding multiple food groups because of FPIES was more common than previously reported. A large proportion of children in our cohort had first-degree relatives with FPIES, and, furthermore, having a first-degree relative with FPIES was significantly associated with the affected child avoiding multiple food groups.

Food protein-induced enterocolitis syndrome from the parent perspective.

PURPOSE OF REVIEW: To describe the obstacles that parents face when caring for a child with food protein-induced enterocolitis syndrome (FPIES) and discuss initiatives of key importance to the FPIES community. RECENT FINDINGS: Findings from a previous survey indicate that 80% of pediatricians have little or no knowledge of FPIES, suggesting that awareness is severely lacking among frontline providers. A preliminary study also indicates that the condition can have a profound effect on quality of life for patients and families. SUMMARY: FPIES is a rare but growing condition that poses significant personal and familial challenges for parents before and after diagnosis. Increased efforts from the medical community are needed to raise awareness among medical providers, establish improved criteria and guidelines for diagnosis and management, increase understanding through research, and offer parent information and support at every stage.