Outpatient Child Life: Integrating play, coping strategies, and diagnosis education into a Pediatric Cystic Fibrosis Center

Background: A small Midwest cystic fibrosis (CF) center gained child life support in fall of 2016, but availability was limited due to sharing full-time equivalents (FTEs) between 31 outpatient subspecialty clinics. Child life involvementwas often restricted to immediate stressors (e.g., throat swabs, blood draws, first pulmonary function tests) in a reactive approach, but in the summer of 2020, the child life team added FTEs, increasing the ability for a primary child life specialist (CLS) to be more integrated into the clinic workflow. Partnering with the nurse care coordinators, a comprehensive, proactive approach to the integration of child life was formed, focusing on full scope of practice. Method(s): CFregistered nurse care coordinators collaborated with the CLSto discuss the goal of integration while understanding knownpatient stressors and optimal developmental and coping goals for patients younger than 19 and their siblings. We also determined ways to reduce disruption to clinic workflowwhile leveraging scheduling and increasing awareness of scope of practice of the interdisciplinary team, patients, and families. The CLS also obtained feedback from the family advisory committee engrained in clinic along with hosting a booth at the center's annual CF familyevent that targets caregivers of children with CF. Throughout each of these formative actions,(Figure Presented) Figure 1. : Child life integration protocol the primary focus was on collaboration with the interdisciplinary team, employing the full scope of practice of the CLS, mitigating logistical barriers, and optimizing patient experience and satisfaction. Result(s): The current plan (Figure 1) is based on identified time points where developmentally appropriate interventions and resources are implemented in a stepwise fashion, building upon itself. Interventions are individualized for each patient or family member based on coping and learning needs or developmental differences and are completed by the CLS based on professional judgment and after assessment and rapport is built. The scope of practice includes preparation for procedures or changes in the plan of care, procedural support, creation of coping plans for in-clinic and at-home care routines or events, educational activities and resources (e.g., making slime to learn about mucus, word searches about medications), therapeutic activities to support emotional processing of chronic illness, providing information on typical growth and development to caregivers, and facilitating developmentally appropriate transition-readiness goals through CF R.I.S.E. materials. During the COVID global pandemic, changes to outpatient clinic, including addition of virtual appointments, allowed the CLS to expand practice further. In these video appointments, teen patients appear to be more engaging and talkative, allowing the CLS to better assess coping, adherence, and transition readiness in a relaxed Table 1. Two-way table depicting concordance between substance use and mental health screening results at same encounter. General Anxiety Disorder (GAD7) and Patient Health Questionnaire (PHQ9) results were aggregated such that a positive screening result on either was compared with neither being positive.(Table Presented) environment more suited to their developmental needs. Based on the success of having video appointments with adolescent patients without caregivers present, the CLS and the registered nurse care coordinators agreed to include these moving forward. Conclusion(s): The integration of the CLS at full scope of practice benefits not only patients and families, but also the interdisciplinary team and clinic as a whole. By taking a proactive and preventative approach, coping and psychosocial concerns can be navigated throughout the developmental stages with greater stability and emotional safety for patients and their familiesCopyright © 2022, European Cystic Fibrosis Society. All rights reserved

Risk Communication During the COVID-19 Pandemic in the Era of Social Media

The widespread application of social media in the field of crisis management has been adopted globally. In recent years, the role of social media in emergencies has grown, especially during the coronavirus disease 2019 (COVID-19) pandemic. This study explores the different roles played by social media in the government, the media, and the public during the pandemic through the key nodes of information dissemination at each developmental stage of crisis risk communication. The results indicate that in a government-led environment, in which social media is the link and the public is the core, attention must be directed towards the key role of social media as a "whistleblower” during the incubation period of a crisis event. Moreover, a new gatekeeping mechanism that integrates the public, the media, and the government should be formed to improve emergency management during crises. © Fuji Technology Press Ltd.

RNA therapeutics from rare to common diseases

RNA therapeutics have taken a center stage during the pandemic, due to the successful development and launch of two mRNA COVID-19 vaccines (by Moderna and Pfizer/BioNTech). Although there are already multiple commercially successful RNA drugs for the treatment of orphan indications, this is the first time that RNA therapies unlock their commercial value in mass population. With the backdrop of massive capital and interest flooding into the field of RNA therapeutics, many companies began to expand their orphan-indication-centered RNA therapeutic portfolio into common diseases. In this article, we calculated the success rate of publicly available RNA therapeutic pipelines at each development stage as well as their likelihood of approval (LOA). We found those targeting common diseases have a much lower LOA rate when compared with pipelines targeting rare diseases (5.8% vs. 23.8%). Consequently, we discussed the underlying challenges and potential opportunities for RNA therapeutics moving from rare to common diseases. Copyright © 2022 Authors. All rights reserved.

Multiplicity Matters: The Development of Interest Profiles During Dynamic Institutional Transitions

Students pursue multiple interests within their daily lives. The current study aims to describe the development of interest profiles (the total composition of all interests one pursues) in terms of the amount of interests, their domain divergence and developmental stages. Using Latent Growth Models on interest data of 309 students over the course of three years (10 timepoints), we will specifically explore interest profile development, also in the context of institutional transitions and COVID-19 measures. © ISLS.

Generation Of Macro-scale And Mature Lung Organoids Through Engineering Cell Microenvironment

Purpose/Objectives: <Most used lower respiratory tract models consist of cell monolayers which lack of tissue and organ level response and of in-vivo phenotype. Ex-vivo lung tissues have short viability and limited availability. Lung organoids, which recapitulates better the 3D cellular complex structures, architecture, and in-vivo function, fail to reach maturity even after 85 -185 days of culture. Therefore, these models have a limited use to study fetal lung diseases. Other lung models, consist of only one structure of the lower track, such as bronchial tubes or alveoli, but fail to recapitulate the whole organ structure. In this work, cell microenvironment was used to promote the self-organization of epithelial and mesenchymal cells into macro-structures, aiming to mimic the whole and adult lower respiratory tract model> Methodology: <Different parts of the microenvironment were considered to create a compliant matrix. Alginate-Gelatin hydrogels were used for 3D encapsulation of mesenchymal origin cells. This hydrogel provided a stiffness like the one on the lung. Base membrane zone proteins were used to induce the attachment and guidance of epithelial cells into 3D structures. The interactions between both cell types, further guided them into lung fate. The morphology of resulting organoids was analyzed using immunostaining and confocal microscopy, LSM710, with the purpose of evaluate polarization, protein markers, and different cell populations. Quantitative PCR was performed to evaluate and compare the expression of lung fate genes with traditional cell monocultures.> Results: <The engineered microenvironment and protocol development done in this work resulted in macro-scale structures, in which branching morphogenesis occurred at day 21. Different structures were identified in the organoid including bronchial tube, bronchioles, and alveoli. Polarization of the organoids was confirmed by visualization of E-cadherin, and ZO-1. Expression of Surfactant Protein B and C into the organoids confirmed the presence of alveolar type II cells, which are only present in the later development stage. Surfactant Protein B, Transmembrane protease, serine 2, TMPRSS-2, and Angiotensin-converting enzyme 2, ACE2 were found to be significantly higher expressed into the organoids in comparison with traditional epithelial cells monolayers.> Conclusion/Significance: <Growth factors are normally used to induce the fate of stem cells into lung organoids;however, these fail to reach maturity. Here, we developed a new methodology to induce the formation of the organoids based on the cell microenvironment. The resulting organoids require less time for development. The initial stage of adult cells can be modulated through culture conditions induce a 3D structure like the adult lung. As such, these organoids have the potential to be used for modeling adult diseases and to develop specific models from patient cells, which is one step forward to personalized medicine. SFTPB is one of the main proteins which facilitates the breathing process. Its high expression into our model may indicate that breathing occurs into our lung organoids. The higher expression of TMPRSS-2 and ACE2 into the organoids has a major significance in the field of virology since both proteins are the mainly entrance of SARS-CoV-2, and influenza H1N1.>.

Best practices of training Latin America experts in occupational health

Occupational Health training (OHT) is a relevant topic. It deserves special attention particularly during critical public health conditions such as COVID-19 pandemic. Investment developing human capital included OHT debate and practice are needed to achieve positive results. Occupational Health (OH) professionals deal with human lives and should be fully capable to effectively perform their duties. The Latin American scenario is complex, and countries of the region experience distinct social and economic development stages. These differences impact the recognition of workers´ health in national policies. Labor and health legislations play a regulatory role implementing OH practices in productive processes of different job sectors. The presentation aims to show OHT of three Latin American countries - Brazil, Colombia, and Mexico. Those are the most populous of the region. It will be presented regulations and legal requirements for the provision of professional services in the OH field. Topics related to training of OH physicians and nurses will be the focus of the presentation, in order to point out whether classical and emerging issues are taken into account in academic curricula. Additionally, it will be shown the importance given to development of core competences required for OH practice, considering educational programs and strategies. This is necessary to establish the required training in order to deal with regional challenges concerning protection, promotion, and maintenance of workers' health.

Development of a COVID-19 impact assessment for national drug abuse treatment clinical trials network

The COVID-19 Impact Assessment was developed by Emmes' National Drug Abuse Treatment Clinical Trials Network's Data and Statistics Center along with National Institute on Drug Abuse's Center for Clinical Trials Network. With numerous clinical trials investigating treatments for substance use disorder set to initiate data collection in 2020 and 2021, the COVID-19 pandemic presented novel and unanticipated challenges to study implementation. Specifically, it presented potential for disrupting a wide range of factors that could impact trial operations (study visit planning, clinic closures, public health measures, transportation and childcare issues, changes in clinical practice, and economic factors) and outcomes (social isolation, changes in medical and/or psychiatric functioning, changes in substance use patterns including substance used, quantity and frequency). Several National Drug Abuse Treatment Clinical Trials Network clinical trials were in protocol development stage when the pandemic hit. Initially, different protocol teams began compiling questions and assessments within their respective studies in anticipation of the need to assess the prevalence of COVID-19 within the study population as well as the potential impacts of the pandemic. Center for Clinical Trials Network and National Institute on Drug Abuse Data and Statistics Center identified the opportunity to streamline assessment by creating a standardized form that could be used across all trials, which would allow for cross-study harmonization and data analysis. Items for the assessment were drawn from publicly available survey repositories including the CDC Community Survey Online Question Bank, PhenX Toolkit, and the National Institutes of Health Office of Behavioral and Social Sciences Research, and were identified in reference to five primary domains of particular relevance to National Institute on Drug Abuse's vulnerable population of individuals with substance use disorder: (1) personal exposure and illness related to COVID-19 (10 items);(2) mental health and healthcare impact (32 items);(3) knowledge and beliefs about COVID-19 (7 items);(4) social distancing regulations, behavior, and beliefs (37 items);and (5) employment and economic impact and housing stability (9 items). Through an iterative process, stakeholders from Data and Statistics Center, Center for Clinical Trials Network, and Clinical Trials Network determined which items should be retained for inclusion, removed, or added, or considered priority for inclusion during the COVID-19 pandemic, until consensus was reached. While the COVID-19 illness and exposure and Mental Health and treatment impact were considered higher priority, the inclusion of modules or (select items) in trial assessments is at the discretion of the lead investigative team. These may be considered a menu of options for investigators to choose from, so that constructs included are assessed in a harmonized manner across trials. Data from the COVID-19 impact assessment can inform how COVID-19 related illness, changes in mental health functioning and/or treatment access (including substance use treatment medications and psychosocial supports) may impact the operations and outcomes of treatments for substance use disorder in Clinical Trials Network trials that are conducted during the COVID-19 era. Since the development of the form, five National Drug Abuse Treatment Clinical Trials Network trials that are in pre-implementation stage (beginning recruitment as early as January 2021) have elected to include the form either in its entirety or select domains, predominantly choosing to include the mental health and healthcare impact and personal exposure and illness modules.

Children's perspectives on learning to look after their diet and gut: A multicenter qualitative study

Background: Children with cystic fibrosis (CF) often begin asking questions about their CF at 6 to 7 years of age. Despite this, there has been limited research focusing on the learning needs and preferences of preadolescent children with CF. In this study, we explored preadolescent children’s experiences, views, and ideas on gradually learning to look after their diet and gut. Methods: In this qualitative study, children aged 6 to 11 requiring pancreatic enzyme replacement therapy (PERT) were recruited from 3 regional CF centers in England between September 2020 and April 2021. Child-facing study documentation was developed in collaboration with a young person’s advisory group and children with CF of the same age as potential participants. Because of COVID-19, semistructured interviews were adapted from in-person to video call at home and activity packs posted to children to help build rapport and promote engagement during interviews.Written assent and consent were obtained, and children chose to be interviewed alone or with their parent(s), who also took part in an interview. Childrenwere asked what they would like to learn or learn more about and how. Phrasing of questions was tailored to the developmental stage of each child. Interviews were audio-recorded, transcribed verbatim, and analyzed using framework analysis. Results: Interviews were conducted with 16 children. From analysis to date, emerging themes onwhat children would like to learn included begin making sense of what is happening inside their bodies (e.g., not only to learn to recognize gastrointestinal symptoms, but also to begin to understand why they are experiencing them), being independent with PERT when they transition to secondary school, knowing how much PERT they need with different foods and being in the habit of remembering to take it;and knowing which foods to choose that are right for them and having the confidence to do so. For some children, this included tips on howto eat more or try newfoods. Emerging themes on howchildren would like to learn included learning through play;very fewresourceswere being used to facilitate learning, but children would like to learn through playing games (e.g., be a detective solving a mystery, doing and watching experiments [e.g., what happens in the gut if you do not drink or drink a lot]), choosing actions for characters in different scenarios using animation or comic strips, learning with other children with CF, and learning from each other together online in small groups (e.g., sharing experiences of preparing to transition to secondary school, taking part in cook-a-longs, being able to ask questions they would not ask people without CF). Having role models and hearing positive stories and seeing and hearing about people with CF doing well would help motivate them to own their CF, although a gap in role models for young girls was highlighted. Conclusion: Preadolescent children were able to clearly articulate their learning needs and preferences for how their needs could be met. These findings, as part of a larger study, will inform development of a model for self-care support of diet and the gut for children with CF. The novel approach used to interview these children could be used in future studies to inform development of resources and services for children that are appropriate and relevant and respond to their needs.