Updates in SJS/TEN: collaboration, innovation, and community

Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis (SJS/TEN) is a predominantly drug-induced disease, with a mortality rate of 15–20%, that engages the expertise of multiple disciplines: dermatology, allergy, immunology, clinical pharmacology, burn surgery, ophthalmology, urogynecology, and psychiatry. SJS/TEN has an incidence of 1–5/million persons per year in the United States, with even higher rates globally. One of the challenges of SJS/TEN has been developing the research infrastructure and coordination to answer questions capable of transforming clinical care and leading to improved patient outcomes. SJS/TEN 2021, the third research meeting of its kind, was held as a virtual meeting on August 28–29, 2021. The meeting brought together 428 international scientists, in addition to a community of 140 SJS/TEN survivors and family members. The goal of the meeting was to brainstorm strategies to support the continued growth of an international SJS/TEN research network, bridging science and the community. The community workshop section of the meeting focused on eight primary themes: mental health, eye care, SJS/TEN in children, non-drug induced SJS/TEN, long-term health complications, new advances in mechanisms and basic science, managing long-term scarring, considerations for skin of color, and COVID-19 vaccines. The meeting featured several important updates and identified areas of unmet research and clinical need that will be highlighted in this white paper

Emotional expressivity as a signal of cooperation

Previous research has suggested that the spontaneous display of positive emotion may be a reliable signal of cooperative tendency in humans. Consistent with this proposition, several studies have found that self-reported cooperators indeed display higher levels of positive emotions than non-cooperators. In this study, we defined cooperators and non-cooperators in terms of their behavior as the proposer in an ultimatum game, and video-taped their facial expressions as they faced unfair offers as a responder. A detailed analysis of the facial expressions displayed by participants revealed that cooperators displayed greater amounts of emotional expressions, not limited to positive emotional expression, when responding to unfair offers in the ultimatum game. These results suggest that cooperators may be more emotionally expressive than non-cooperators. We speculate that emotional expressivity can be a more reliable signal of cooperativeness than the display of positive emotion alone

Perception and Sense of Control Over Eating Behaviors Among a Diverse Sample of Adults at Risk for Type 2 Diabetes

PurposeThe purpose of the study was to explore and understand knowledge and attitudes about food, diet, and weight control, focusing on barriers and motivators to reduce risk of developing type 2 diabetes.MethodsSix focus groups were conducted in May and June 2010. The groups were stratified by sex. A total of 35 ethnically diverse samples with a high risk for type 2 diabetes participated. The average age was 51 ± 10.6 years, and 57% of the sample represented women.ResultsFour themes emerged from the focus groups: (1) demonstrated knowledge and source of knowledge, including participants' basic understanding of "good" and "bad" food and what constitutes a "healthy diet" and trusted sources of information; (2) perceptions of food and diet, encompassing how participants expressed their perception of and interaction with food and diet; (3) sense of control over dietary intake, reflecting participants' discussion of their perceived ability to control their eating patterns and food choices; and (4) eating behaviors, describing participants' patterns of eating and perceived barriers to eating a healthy diet.ConclusionsStudy findings demonstrate that eating healthy requires a complex interaction between individual perceptions of food and sense of control over eating patterns and sociopolitical and economic structural factors that restrict healthy eating options while promoting unhealthy ones. Programs for long-term eating behavioral change necessary to reduce type 2 diabetes and obesity need to incorporate strategies that address individual-level factors of perception of food and sense of control over eating patterns, as well as structural level factors such as poverty and food insecurity

Perception and Sense of Control Over Eating Behaviors Among a Diverse Sample of Adults at Risk for Type 2 Diabetes

PURPOSE: The purpose of the study was to explore and understand knowledge and attitudes about food, diet, and weight control, focusing on barriers and motivators to reduce risk of developing type 2 diabetes. METHODS: Six focus groups were conducted in May and June 2010. The groups were stratified by sex. A total of 35 ethnically diverse samples with a high risk for type 2 diabetes participated. The average age was 51 ± 10.6 years, and 57% of the sample represented women. RESULTS: Four themes emerged from the focus groups: (1) demonstrated knowledge and source of knowledge, including participants’ basic understanding of “good” and “bad” food and what constitutes a “healthy diet” and trusted sources of information; (2) perceptions of food and diet, encompassing how participants expressed their perception of and interaction with food and diet; (3) sense of control over dietary intake, reflecting participants’ discussion of their perceived ability to control their eating patterns and food choices; and (4) eating behaviors, describing participants’ patterns of eating and perceived barriers to eating a healthy diet. CONCLUSIONS: Study findings demonstrate that eating healthy requires a complex interaction between individual perceptions of food and sense of control over eating patterns and socio-political and economic structural factors that restrict healthy eating options while promoting unhealthy ones. Programs for long-term eating behavioral change necessary to reduce type 2 diabetes and obesity need to incorporate strategies that address individual-level factors of perception of food and sense of control over eating patterns, as well as structural level factors such as poverty and food insecurity

Deep Brain Stimulation in Early-Stage Parkinson’s Disease: Patient Experience after 11 Years

The deep brain stimulation (DBS) in early-stage Parkinson’s disease (PD) pilot trial began more than a decade ago and remains the only investigation of DBS in mildly symptomatic patients. Patients completed therapeutic washouts biannually for two years, outpatient assessments through five years, and a longitudinal washout assessment after 11 years. Here, the patient experience of participating in the early DBS pilot trial is described. Semi-structured interviews were audio-recorded and transcribed. Transcripts were coded, analyzed using an iterative inductive-deductive approach, and used to develop a conceptual framework. Ten participants (n = 6 early optimal drug therapy (ODT), n = 4 early DBS + ODT) were interviewed. Motivations for participation included benefit to future PD patients and potential personal benefit, while hesitations included risk of surgical complications. While early ODT patients who received standard-of-care DBS described significant changes in their functional capacities after surgery, early DBS patients described a maintenance of quality of life that made PD less impactful over an extended period. Patients expressed high satisfaction with trial participation and early DBS. This study suggests that the PD experience with early DBS may notably differ from standard-of-care DBS. The FDA has approved the conduct of a pivotal clinical trial evaluating DBS in early-stage PD (IDEG050016)

Why Do Women Not Use the Bathroom? Women’s Attitudes and Beliefs on Using Public Restrooms

There are a variety of factors and influences, both internal and external, that may impact an individual’s public toileting experience and may ultimately have repercussions for bladder health. This study sought to identify predominant constructs underlying a women’s attitude towards using restrooms at work, at school, and in public in order to develop a conceptual model incorporating these themes. We performed a secondary analysis of a cross-sectional, survey-based study that included open-ended questions about limitations to restroom use using a mixed-methods approach. Qualitative data coding and analysis was performed on 12,583 quotes and, using an iterative inductive-deductive approach, was used to construct the conceptual framework. Our conceptual framework reveals a complicated interplay of personal contexts, situational influences, and behavioral strategies used by women to manage their bladder and bowel habits away from home. These findings can inform future research and public policy related to bladder health awareness related to toilet access in the workplace and in public

Preferences for Using a Mobile App in Sickle Cell Disease Self-management: Descriptive Qualitative Study

BackgroundIndividuals with sickle cell disease (SCD) and their caregivers may benefit from technology-based resources to improve disease self-management. ObjectiveThis study explores the preferences regarding a mobile health (mHealth) app to facilitate self-management in adults with SCD and their caregivers living in urban and rural communities. MethodsFive community listening sessions were conducted in 2 urban and rural communities among adults with SCD and their caregivers (N=43). Each session comprised 4 to 15 participants. Participants were asked questions on methods of finding information about SCD self-care, satisfaction with current methods for finding SCD management information, support for SCD management, important features for development of an mHealth app, and areas of benefit for using an mHealth app for SCD self-management. An inductive-deductive content analysis approach was implemented to identify the critical themes. ResultsSeven critical themes emerged, including the current methods for receiving self-management information, desired information, recommendations for communicating sickle cell self-management information, challenges of disease management, types of support received for disease management, barriers to and facilitators of using an mHealth app, and feature preferences for an mHealth app. In addition, we found that the participants were receptive to using mHealth apps in SCD self-management. ConclusionsThis study expands our knowledge on the use of mHealth technology to reduce information access barriers pertaining to SCD. The findings can be used to develop a patient-centered, user-friendly mHealth app to facilitate disease self-management, thus increasing access to resources for families of patients with SCD residing in rural communities

Sickle Cell Carriers\u27 Unmet Information Needs: Beyond Knowing Trait Status

Benefits of identifying sickle cell disease (SCD) carriers include detection of at-risk couples who may be informed on reproductive choices. Studies consistently report insufficient knowledge about the genetic inheritance pattern of SCD among people with sickle cell trait (SCT). This study explored perspectives of adults with SCT on the information needed to make an informed reproductive decision and the recommendations for communicating SCT information. Five focus groups (N = 25) were conducted with African Americans with SCT ages 18–65 years old. Participants were asked about their knowledge of SCT, methods for finding information on SCT, impact of SCT on daily living, and interactions with healthcare providers. An inductive-deductive qualitative analysis was used to analyze the data for emerging themes. Four themes emerged, highlighting the unmet information needs of African American sickle cell carriers: (a) SCT and SCD Education; (b) information sources; (c) improved communication about SCT and SCD; and (d) increased screening strategies. Future studies are needed to determine effective strategies for communicating SCT information and to identify opportunities for education within community and medical settings. Identifying strategies to facilitate access to SCT resources and education could serve as a model for meeting unmet information needs for carriers of other genetic conditions