Maternal and Fetal Outcomes in Multiparous Women with Cystic Fibrosis.

BACKGROUND: Quality of life and survival in Cystic Fibrosis (CF) have improved dramatically, making family planning a feasible option. Maternal and perinatal outcomes in women with CF (wwCF) are similar to those seen in the general population. However, the effect of undergoing multiple pregnancies is unknown. METHODS: A multinational-multicenter retrospective cohort study. Data was obtained from 18 centers worldwide, anonymously, on wwCF 18-45 years old, including isease severity and outcome, as well as obstetric and newborn complications. Data was analyzed, within each individual patient to compare the outcomes of an initial pregnancy (1st or 2nd) with a multigravid pregnancy (≥3) as well as secondary analysis of grouped data to identify risk factors for disease progression or adverse neonatal outcomes. Three time periods were assessed - before, during, and after pregnancy. RESULTS: The study population included 141 wwCF of whom 41 (29%) had ≥3 pregnancies, "multiparous". Data was collected on 246 pregnancies, between 1973 and 2020, 69 (28%) were multiparous. A greater decline in ppFEV1 was seen with multiparous women, primarily in pancreatic insufficient (PI) wwCF and those with two severe (class I-III) mutations. Multigravid pregnancies were shorter, especially in wwCF over 30 years old, who had high rates of prematurity and newborn complications. There was no effect on pulmonary exacerbations or disease-related complications. CONCLUSIONS: Multiple pregnancies in wwCF are associated with accelerated respiratory deterioration and higher rates of preterm births. Therefore, strict follow-up by a multidisciplinary CF and obstetric team is needed in women who desire to carry multiple pregnancies.

Virtual interviews and equity: The pediatric pulmonary fellow perspective.

BACKGROUND AND OBJECTIVES: The SARS-CoV-2 pandemic shifted medical training programs to utilize virtual interviews (VIs) starting with the 2020 interview cycle. Fellowship interviews continue in the virtual format. It is unknown how this shift has affected equity for applicants as compared to in-person interviews. Equity in this study includes consideration of the opportunity for an applicant to accept, access, and conduct a VI. This study assessed pediatric pulmonary fellows' perception of equity associated with VIs and preferences for future cycles. METHODS: An anonymous survey link was emailed to Pediatric Pulmonology Program Directors to disseminate to incoming and first-year pediatric pulmonary fellows who participated in the 2022-2023 and 2021-2022 VI seasons. Responses were summarized by frequency and percentages. Inductive coding was used to thematically analyze free-text responses. RESULTS: Nearly 30% of eligible incoming and first-year pulmonary fellows (n = 35/119, 29.4%) completed the survey. Seventy-four percent felt that VIs reduce inequities as compared to in-person interviews. Sixty percent felt that VIs were the most equitable format, and 51% chose a VI as their preferred future format. Important practice considerations to promote equity for future VIs included providing applicants with instruction for the expected dress code, followed by providing applicants with virtual technology (91% and 89% of respondents ranked as at least "somewhat important," respectively). CONCLUSION: VIs were perceived as a more equitable interview format by pediatric pulmonology fellows compared to in-person interviews in our study. To increase equity for VIs, program directors can consider additional adaptations such as providing standardized instruction for dress code and providing the required technology.

Prioritizing sexual and reproductive health research and care for people with cystic fibrosis: A 2023 workshop report from the Cystic Fibrosis Foundation Sexual Health, Reproduction, and Gender (SHARING) Research Working Group.

BACKGROUND: To address sexual and reproductive health (SRH) concerns among people with cystic fibrosis(PwCF), the CF Foundation created the Sexual Health, Reproduction, and Gender Research (SHARING) Working Group. This report summarizes CF community SRH research priorities and workshop discussions/future study planning. METHODS: Pre-workshop, we distributed a community prioritization survey on CF SRH research/care. During the workshop, we used results and reviewed existing research to establish research priorities and design studies to address identified knowledge gaps. RESULTS: A total of 303 respondents (85 % PwCF, 15 % caregivers) completed the survey. Highly-rated SRH topics were: 1) effects of CF modulator therapy on sex hormones; 2) effects of sex hormones on CF; 3) fertility; 4) pregnancy; and 5) SRH/mental health. Twenty-four workshop participants established the need for further research on sex hormones and CF, optimizing SRH care provision, and fertility/ART. CONCLUSION: SRH is an important and emerging area in CF and thoughtful consideration of community perspectives can ensure that future research is relevant and responsive.

Parental entrustment of healthcare responsibilities to youth with chronic conditions: A concept analysis.

PURPOSE: Chronic health conditions impact nearly 40% of children in the United States, necessitating parents/caregivers to entrust healthcare responsibilities to youth aging into adulthood. Understanding the parental entrustment process may lead to tailored transition support; however, the concept lacks conceptual clarity, limiting its research and practical applications. DESIGN AND METHODS: Rodgers' evolutionary concept analysis method was used to clarify the parental entrustment of healthcare responsibilities to youth with chronic health conditions. PubMed, CINAHL, and PsycINFO databases were searched without date restrictions, including full-text, English-language, primary source articles related to parent-child healthcare transition preparation. Following title, abstract, and full-text screenings, data were analyzed using a hybrid thematic approach to identify antecedents, attributes, and consequences. RESULTS: Forty-three studies from August 1996 to September 2023 were identified. Antecedents encompass social cues and readiness factors, while attributes involve a) responsibility transfer, support, and facilitation, b) a dynamic process, c) balancing trust and fear, d) navigating conflict, and e) parental letting go. Consequences entail shifts in parental and adolescent roles. Parental entrustment is an iterative process wherein parents guide their maturing child through responsibility transfer via facilitation, support, conflict navigation, and trust building. CONCLUSION: The clarified concept underscores the role of parents/caregivers in empowering youth to manage their health. Introducing a working definition and conceptual model contributes to understanding the processes families navigate in the larger landscape of healthcare transition. PRACTICE IMPLICATIONS: This clarification holds implications for clinicians and policymakers, offering insights to enhance support and guidance for families navigating healthcare transition.

Preferences and experiences of parents/guardians of youth with epilepsy and intellectual disability on reproductive health counseling.

OBJECTIVE: To explore the experiences and preferences of parents/guardians of adolescents and young adults (AYA) of childbearing potential with co-occurring epilepsy and intellectual disability (ID) regarding counseling by neurologists on sexual and reproductive health (SRH) topics such as pregnancy, contraception, menstruation, and folic acid supplementation. METHODS: We conducted semi-structured interviews with parents/guardians of AYAs (12-28 years old) of childbearing potential with co-occurring epilepsy and ID, recruited from a tertiary-care children's hospital. We confirmed the diagnoses of epilepsy and ID with the patient's neurologist and parent/guardian. All degrees of ID (e.g. mild/moderate/severe) were eligible. We audio-recorded and transcribed interviews. Two coders performed qualitative thematic analysis. RESULTS: Twenty-five parents/guardians completed interviews. Themes included: (1) Parents/guardians believe their child to be immune from sexual abuse due to their supervision, yet desire counseling about abuse recognition and prevention, which they also report not occurring (2) A common opinion was that counseling on menstruation was more relevant to their child's life than counseling about pregnancy-related topics (3) Parents/guardians reported a lack of counseling on pregnancy-related topics such as folic acid supplementation and teratogenesis and generally also reported some degree of interest in hearing about these topics from neurologists (4) Parents/guardians also reported a lack of counseling on drug interactions between contraception and ASMs, and were highly interested in learning more about this topic (5) Parents/guardians want neurologists to initiate annual comprehensive SRH counseling at puberty about most topics, but report that they often initiate SRH discussions themselves. CONCLUSION: Parents/guardians of AYAs with epilepsy and ID prefer more frequent, neurologist-initiated, comprehensive conversations surrounding SRH particularly emphasizing menstruation and sexual abuse recognition/prevention. Findings may inform professional and patient education and health systems interventions including development of discussion guides and/or decision aides to improve SRH care for AYAs with epilepsy and ID.

Work-Life Integration for Women in Pediatric Emergency Medicine: Themes Identified Through Group Level Assessment.

OBJECTIVE: Women in medicine generally have higher burnout and lower career satisfaction and work-life integration compared with men. This study identifies factors that contribute to burnout, career satisfaction, and work-life integration in women pediatric emergency medicine (PEM) physicians. METHODS: Self-identified women PEM physicians in the United States participated in a virtual focus group using Group Level Assessment methodology. Participants completed Group Level Assessment process steps of climate setting, generating, appreciating, reflecting, understanding, selecting, and action to (1) identify themes that contribute to burnout, career satisfaction, and work-life integration and (2) determine actionable factors based on these themes. Data were collected and thematically analyzed in real time through iterative processing. The group prioritized identified themes through rounds of distillation. RESULTS: Seventeen women participated, representing 10 institutions (ages 30s-70s, 69% employed full-time). Participants identified 3 main themes contributing to burnout, career satisfaction, and work-life integration: (1) gender inequities, (2) supportive leadership, and (3) balance with family life. Actionable items identified were as follows: (1) development of initiatives to equalize pay, opportunity, and career advancement among genders; (2) implementation of an institutional focus on supportive and collaborative leadership; and (3) improvement of resources and supports for physicians with family responsibilities. CONCLUSIONS: Women PEM physicians identified gender inequities, leadership, and balance with family life as major themes affecting their burnout, career satisfaction, and work-life integration. Several action steps were identified and can be used by individuals and institutions to improve work-life integration for women PEM physicians.

Use of Natural Language Processing to Identify Sexual and Reproductive Health Information in Clinical Text.

OBJECTIVES: This study aimed to enable clinical researchers without expertise in natural language processing (NLP) to extract and analyze information about sexual and reproductive health (SRH), or other sensitive health topics, from large sets of clinical notes. METHODS: (1) We retrieved text from the electronic health record as individual notes. (2) We segmented notes into sentences using one of scispaCy's NLP toolkits. (3) We exported sentences to the labeling application Watchful and annotated subsets of these as relevant or irrelevant to various SRH categories by applying a combination of regular expressions and manual annotation. (4) The labeled sentences served as training data to create machine learning models for classifying text; specifically, we used spaCy's default text classification ensemble, comprising a bag-of-words model and a neural network with attention. (5) We applied each model to unlabeled sentences to identify additional references to SRH with novel relevant vocabulary. We used this information and repeated steps 3 to 5 iteratively until the models identified no new relevant sentences for each topic. Finally, we aggregated the labeled data for analysis. RESULTS: This methodology was applied to 3,663 Child Neurology notes for 971 female patients. Our search focused on six SRH categories. We validated the approach using two subject matter experts, who independently labeled a sample of 400 sentences. Cohen's kappa values were calculated for each category between the reviewers (menstruation: 1, sexual activity: 0.9499, contraception: 0.9887, folic acid: 1, teratogens: 0.8864, pregnancy: 0.9499). After removing the sentences on which reviewers did not agree, we compared the reviewers' labels to those produced via our methodology, again using Cohen's kappa (menstruation: 1, sexual activity: 1, contraception: 0.9885, folic acid: 1, teratogens: 0.9841, pregnancy: 0.9871). CONCLUSION: Our methodology is reproducible, enables analysis of large amounts of text, and has produced results that are highly comparable to subject matter expert manual review.

A provider survey assessing fetal impact of CFTR modulator use in males with CF during assisted and unassisted reproduction and partner pregnancy.

BACKGROUND: Most males with cystic fibrosis (mwCF) are infertile but with CF transmembrane conductance regulator (CFTR) modulator-conferred benefits, more are utilizing assisted reproductive technologies (ART). Administration of normal human doses of modulators in animal reproductive models caused no genotoxicity; no human data exists. Potential health decline following modulator discontinuation makes the decision to withhold therapy during reproduction challenging. METHODS: From August-October 2021, international CF clinicians completed an anonymous questionnaire regarding mwCF who used modulators during reproduction. RESULTS: We received 42 surveys for mwCF with partner pregnancies. Forty of 42 mwCF utilized ART; 35 continued modulators during sperm retrieval and 40/42 during partner pregnancy. One of four males who discontinued modulators experienced clinical deterioration. First trimester miscarriages occurred in 11.9 % of partner pregnancies. No congenital anomalies were reported. CONCLUSIONS: Use of CFTR modulators during reproduction and partner pregnancy in mwCF did not result in a higher-than-expected miscarriage rate nor congenital anomalies.

Clinician perspectives and practices related to sexual and reproductive care provision for males with cystic fibrosis.

BACKGROUND: Males with cystic fibrosis (MwCF) have unique sexual and reproductive health (SRH) concerns. This study investigates multidisciplinary CF clinician perspectives related to SRH for MwCF in the current era of CF care. METHODS: We surveyed multidisciplinary clinicians exploring attitudes, practices, and preferences toward male CF SRH care. We compared responses across groups by population served (pediatric vs. adult vs. both pediatric and adult MwCF) using chi square/Fisher's exact tests. RESULTS: A total of 297 clinicians completed the survey (41 % pediatric, 36 % adult, 23 % both; 27 % physicians, 24 % social workers, 11 % nurses, 41 % other). Nearly all (98 %) believed the CF team had a role in SRH care with 75 % believing they should be primarily responsible. Pediatric clinicians were less likely to deem SRH topics important and less likely to report annual discussions compared to adult colleagues (all p<0.05). Pediatric clinicians reported less comfort in their SRH knowledge than adult colleagues (p<0.001) and in their ability to provide SRH care (p<0.05). Common barriers endorsed by respondents included lack of SRH knowledge (75 %) and presence of family/partners in exam room (64 %). A majority rated SRH screening tools (91 %), partnerships with SRH specialists (90 %), clinician training (83 %), and management algorithms (83 %) as potential facilitators. CONCLUSION: Multidisciplinary CF clinicians perceive SRH for MwCF as important but report suboptimal SRH discussions. Pediatric clinicians report significantly less comfort and skill in discussing and managing male SRH. Identified barriers and facilitators should be used to improve SRH care for MwCF.

Factors associated with pubertal growth outcomes in cystic fibrosis: Early Growth and Puberty in CF.

BACKGROUND: Pubertal delays in children with cystic fibrosis (CF) have historically been common. It is unclear to what degree puberty is affected in the new era of CF care or the role of early nutritional status. We hypothesized that more favorable early growth trajectories are associated with improved pubertal growth outcomes. METHODS: We used data from the United States CF Foundation Patient Registry to analyze associations between early weight-for-length/body mass index (WFL-BMI) growth trajectories and pubertal outcomes, using peak height velocity (PHV) and age at PHV (APHV) as proxy measures for puberty in addition to adult height (defined as height at age 18 years). Our analysis consisted of shape invariant mixed modeling and multivariable linear regression. RESULTS: Our sample consisted of 9,186 people with CF aged 18 to 21 years between 2010-2019. APHV was earliest and PHV/adult height were highest in those with WFL-BMI always >50th percentile from 0-6 years. However, there was no difference after adjusting for key covariates. Receiving CF transmembrane conductance regulator (CFTR) modulator therapy in childhood was associated with being taller at 18 years, by 0.92 cm in males (p=0.048) and 1.02 cm in females (p=0.010) in adjusted models. Higher height z-score at 2 years was associated with improved APHV and PHV for males and improved adult height for both males and females (p<0.001) in adjusted models. CONCLUSIONS: Early height, but not early WFL-BMI trajectories, may be associated with pubertal growth outcomes. CFTR modulator therapy shows the potential to improve pubertal growth outcomes, but further research is necessary.

School-based diabetes care: A national survey of U.S. pediatric diabetes providers.

Objectives: To understand the practices, attitudes, and beliefs of type 1 diabetes (T1D) providers towards school-based diabetes care (SBDC), including counseling families and communicating with schools, and explore the barriers and facilitators which affect their support of SBDC. Research Design and Methods: We conducted a national survey of pediatric T1D providers about their perceived support of SBDC, including family counseling and school communication. We used descriptive statistics to analyze results and explored differences by practice size (<500, 500-999, and ≥1000 patients) and environment (academic vs non-academic). Results: A total of 149 providers completed the survey. Nearly all (95%) indicated SBDC was very important. Though most (63%) reported counseling families about SBDC multiple times per year, few (19%) spoke with school staff routinely, reporting that was a shared responsibility among different providers. Close to 90% agreed school feedback on T1D management plans would be helpful, yet only 31% routinely requested this input. Moderate to extremely significant barriers to SBDC communication included internal factors, such as staff resources (67%) and time (82%), and external factors, such as school nurse education needs (62%) and differing school district policies (70%). Individuals from large or academic practices reported more barriers in their knowledge of SBDC, including federal/state laws. Desired facilitators for SBDC included a designated school liaison (84%), electronic transmission for school forms (90%), and accessible school staff education (95%). Conclusions: Though providers universally agree that SBDC is important, there are multilevel internal (practice) and external (policy) barriers to facilitating a bidirectional relationship between schools and health teams.

School Nurse Confidence with Diabetes Devices in Relation to Diabetes Knowledge and Prior Training: A Study of Convergent Validity.

Objective: The Diabetes Device Confidence Scale (DDCS) is a new scale designed to evaluate school nurse confidence with diabetes devices. We hypothesized that DDCS score would be associated with related constructs of school nurse diabetes knowledge, experience, and training. Research Design and Methods: In a cross-sectional study, we co-administered the DDCS and Diabetes Knowledge Test 2 (DKT2) questionnaires to school nurses in Pennsylvania. We summarized DDCS scores (range 1-5) descriptively. We evaluated the relationship between DKT2 percent score and DDCS mean score with the Spearman correlation coefficient. Simple linear regression examined school nurse characteristics as predictors of DDCS score. Results: A total of 271 completed surveys were received. Mean DDCS score was 3.16±0.94, indicating moderate confidence with devices overall. School nurses frequently reported low confidence in items representing specific skills, including suspending insulin delivery (40%), giving a manual bolus (42%), knowing when to calibrate a continuous glucose monitor (48%), changing an insulin pump site (54%), and setting a temporary basal rate (58%). Mean DKT2 score was 89.5±0.1%, which was weakly but not significantly correlated with DDCS score (r=0.12, p=0.06). Formal device training (p<0.001), assisting ≥5 students with diabetes devices in the past 5 years (p<0.01), and a student caseload between 1000-1500 students (p<0.001) were associated with higher mean DDCS score. Conclusions: DDCS score is related to prior training and experience, providing evidence for the scale's convergent validity. The DDCS may be a useful tool for assessing school nurse readiness to use devices and identify areas to enhance knowledge and practical skills.

Gender Differences in Work-Life Integration, Career Satisfaction, and Burnout in Pediatric Emergency Medicine Physicians: A Cross-Sectional Analysis.

OBJECTIVE: Women physicians report worse work-life integration, career satisfaction, and burnout than men. No studies have evaluated work-life integration and career satisfaction in pediatric emergency medicine (PEM) or explored gender differences for these outcomes. This study aims to (1) compare work-life integration, career satisfaction, and burnout in women and men PEM physicians and (2) compare associated individual and occupational factors to distinguish modifiable factors. METHODS: We distributed an electronic survey to assess well-being parameters in PEM physicians. We assessed career satisfaction and work-life integration with single-item measures. We used a 2-item screen to measure burnout. We performed descriptive analyses, univariate analysis to compare gender differences, and multivariate logistic regression analysis for each outcome. RESULTS: Two hundred thirty-nine PEM physicians participated, yielding a response rate of 50% (57% women; age range, 30-80 years). Overall satisfaction with work-life integration was 42.9%, with 34.3% of women reporting appropriate work-life integration, compared with 55.4% of men (P = 0.001). Career satisfaction rate was 77.8%, with 71.6% of women reporting career satisfaction, compared with 86.1% of men (P = 0.008). Burnout rate was 44.5%, with 53.7% of women reporting burnout compared with 33.7% of men (P = 0.002). Modifiable factors identified include perception of unfair compensation, inadequate physical and mental health support provided by organization, feeling unappreciated, inadequate provider staffing, inadequate resources for patient care, lack of advance notice or control of work schedule, and inadequate sleep. CONCLUSIONS: Of PEM physicians, women have worse work-life integration, less career satisfaction, and more burnout than men. The PEM community should devote resources to modifiable occupational factors to improve gender disparities in well-being parameters.

Feasibility Testing of a Web-Based Reproductive Decision Support Tool for Cystic Fibrosis.

BACKGROUND: People with cystic fibrosis (CF) are increasingly considering their reproductive goals. We developed MyVoice:CF, a web-based patient-centered reproductive decision support tool and assessed its implementation in CF care. METHODS: We conducted a feasibility trial among 18-44-year-old women with CF and multidisciplinary CF providers. Prior to CF clinic visit, patient participants completed a baseline survey, used MyVoice:CF, and assessed acceptability, appropriateness, and usability. After clinic, participants rated impact on reproductive health communication. At 3 months post-use, participants assessed impact on reproductive health outcomes. Provider participants completed a survey and focus group regarding MyVoice:CF feasibility/implementation. We assessed outcomes descriptively. We compared MyVoice:CF's impact on outcomes from baseline to follow-up using McNemar's and Wilcoxon signed rank tests as appropriate. RESULTS: Forty-three patient participants completed baseline surveys and 40 rated MyVoice:CF's feasibility; 10 providers participated. Patient participants rated MyVoice:CF's acceptability as 4.48±0.50 out of 5, appropriateness as 4.61±0.48 out of 5, and usability as 82.25±11.02 ('A'/excellent). After MyVoice:CF use, participants reported improved reproductive health communication self-efficacy vs. baseline (3.54±1.17vs.3.95±0.93, p<0.001). At baseline, 36% of participants reported any discussion of reproductive goals/plans with their CF team in the past year compared to 59% after first visit post-MyVoice:CF use (p=0.049). Provider participants similarly rated MyVoice:CF as feasible and reported no negative impacts on clinic flow after implementation. CONCLUSIONS: MyVoice:CF is acceptable, appropriate, and usable for those with CF. Preliminary effectiveness evaluation suggests that MyVoice:CF improves self-efficacy in and frequency of reproductive health communication. Future studies should further assess MyVoice:CF's impact on reproductive health communication and outcomes.

The modern landscape of fertility, pregnancy, and parenthood in people with cystic fibrosis.

PURPOSE OF REVIEW: With improved long-term survival and the expanding availability of cystic fibrosis transmembrane conductance regulator (CFTR) modulator therapies that treat the underlying genetic defect in cystic fibrosis, more people are interested in parenthood. Cystic fibrosis care centers and people with cystic fibrosis need more information to guide decisions related to parenting. RECENT FINDINGS: Here we present currently available data on fertility, pregnancy, and parenthood in the modern era of cystic fibrosis care. Fertility may be improving in female individuals with cystic fibrosis with the use of CFTR modulator therapies, and there is an associated increase in annual pregnancies. Infertility in male individuals with cystic fibrosis remains approximately 97-98% and is unchanged with CFTR modulators in those already born with cystic fibrosis. As more female individuals with cystic fibrosis experience pregnancy, questions remain about the impact of pregnancy on their health and that of their child. Fortunately, there are multiple routes to becoming a parent; however, more work is needed to understand the impact of pregnancy and parenthood in the context of CF as some previous data suggests potential challenges to the health of parents with cystic fibrosis. SUMMARY: We encourage cystic fibrosis care teams to have knowledge and resources available to support the reproductive goals of all individuals with cystic fibrosis.

Diversity, Equity, and Inclusion in the Pediatric Pulmonary Workforce: An Official American Thoracic Society Workshop Report.

Despite growing recognition of the need for increased diversity among students, trainees, and faculty in health care, the medical workforce still lacks adequate representation from groups historically underrepresented in medicine (URiM). The subspecialty field of pediatric pulmonology is no exception. Although there have been efforts to address issues of diversity, equity, and inclusion (DEI) in our own field, gaps persist. To address these gaps, the members of the Diversity, Equity, and Inclusion Advisory Group (DEI-AG) of the American Thoracic Society Pediatrics Assembly created and distributed a Needs Assessment Survey in the United States and Canada to better understand the racial and ethnic demographics of the pediatric pulmonary workforce and to learn more about successes, gaps, and opportunities to enhance how we recruit, train, and retain a diverse workforce. The DEI-AG leadership cochairs convened a workshop to review the findings of the DEI Needs Assessment Survey and to develop strategies to improve the recruitment and retention of URiM fellows and faculty. This Official ATS Workshop Report aims to identify barriers and opportunities for recruitment, training, and career development within the field of pediatric pulmonology. Additionally, we offer useful strategies and resources to improve the recruitment of URiM residents, the mentorship of trainees and junior faculty, and the career development of URiM faculty in academic centers. This Workshop Report is an important first deliverable by the DEI-AG. We hope that this work, originating from within the Pediatrics Assembly, will serve as a model for other Assemblies, disciplines across the ATS, and other fields in Pediatrics.

Co-production of online educational resources for adolescent and young adult females with epilepsy.

OBJECTIVE: To develop online patient education materials about epilepsy for adolescent and young adult females with epilepsy through co-production in partnership with patients, parents or caregivers, and multi-disciplinary healthcare providers who care for this population. METHODS: We recruited participants from Western/Central Pennsylvania, comprised of females with epilepsy ages 18-26 or parents of children with epilepsy ages 12-26. Healthcare providers who participated in the study were recruited nationally from disciplines of pediatric epilepsy, adult epilepsy, women's neurology, and adolescent medicine. We held three series of meetings to create the online materials from July to August 2021. RESULTS: Five adolescent and young adult females with epilepsy (ages 18-26, median age 22) and two parents of children with epilepsy were recruited and participated in meetings. The physician group was comprised of two adolescent medicine physicians, one adult neurologist with a specialization in women's neurology, one adult epileptologist, and one pediatric epileptologist. All participants were female. Several sets of meetings were held, which involved the creation of an empathy map to evaluate the needs and desires of our participants, topic list development, and specific content and formatting recommendations. After these meetings, content was created for the online materials and published on the Center for Young Women's Health (CYWH) website. CONCLUSION: Our team utilized co-production with a diverse group of partners to create educational materials that met the interests of adolescent and young adult females with epilepsy. This is a structured and reproducible methodology that could inform future educational intervention development in epilepsy.

Structured Engagement of Community Partners to Revise a Pregnancy Options Counseling Curriculum for Pediatric Residents.

OBJECTIVE: The engagement of community partners, including patients, is increasingly recognized as important in developing medical education curricula. Structured methodology for partner engagement in curriculum development is lacking in the existing literature. This article describes a structured approach to engaging community partners to provide input on revising a curriculum for pediatric residents about pregnancy options counseling with adolescents. METHODS: We used the five-step Method for Program Adaptation through Community Engagement: (1) development of a panel of community partners including patients and professionals, (2) and (3) partner evaluation of the existing curriculum and recommendations for revisions, (4) summarization of partner feedback, and (5) development of the revised curriculum. We surveyed partners about their perceived impact on the revision and satisfaction with the process. RESULTS: Seventeen partners participated. Five experienced adolescent pregnancy, while the remaining 12 included healthcare and social service professionals. All partners provided multiple recommendations, generating 124 discrete recommendations. Twenty recommendations were suggested by multiple individuals. The authors reviewed all recommendations by category during consensus meetings and determined which recommendations would be incorporated into the revised curriculum to meet stated learning objectives. We implemented 14 of these 20 recommendations, including adding a values clarification exercise, information about mental health crisis resources, and more detail about adoption. We also incorporated 15 individual recommendations pertaining to curriculum clarity. Recommendations from professionals and patients were similar. Fourteen out of 17 participants completed the survey at the close of the project. All respondents understood their roles, were satisfied with their degree of engagement, and felt that their expectations for participation were met or exceeded. CONCLUSIONS: This study describes a methodology for a formal process to engage community partners in curriculum development and revision processes. Such methodology can ensure that medical education curricula are optimally attuned to the needs of key community members and integrate the patient's voice.

Odds of COVID-19-associated asthma exacerbations in children higher during Omicron wave.

BACKGROUND: We aimed to determine the association of COVID-19 variant wave with asthma exacerbations in children with asthma. METHODS: We conducted a retrospective cross-sectional study of children in the Western Pennsylvania COVID-19 Registry (WPACR). We extracted data for all children in the WPACR with asthma and compared their acute clinical presentation and outcomes during the Pre-Delta (7/1/20-6/30/21), Delta (8/1/21-12/14/21), and Omicron (12/15/21-8/30/22) waves. We conducted multivariable logistic regression analyses of SARS-CoV-2-associated asthma exacerbations, adjusting for characteristics that have been associated with COVID-19 outcomes in prior studies. RESULTS: Among 573 children with asthma in the WPACR during the study period, the proportion of children with COVID-19 who had an asthma exacerbation was higher during the Omicron wave than during the prior two variant waves (40.2% vs. 22.6% vs. 26.2%, p = 0.002; unadjusted OR = 2.12 [95% confidence interval (CI) = 1.39-3.22], p < 0.001). In our multivariable regression models, the odds of an asthma exacerbation were 2.8 times higher during the Omicron wave than during prior waves (adjusted OR = 2.80 [95% CI = 1.70-4.61]). Results were similar after additionally adjusting for asthma severity but were no longer significant after additionally adjusting for poor asthma control. CONCLUSION: The proportion of children with asthma experiencing an asthma exacerbation during SARS-CoV-2 infection was higher during Omicron than prior variant waves, adding to the body of evidence that COVID-19-associated respiratory symptoms vary by variant. These findings provide additional support for vaccination and prevention.

The Impact of SARS-CoV-2 Infection on Symptom Control and Lung Function in Children with Asthma.

Rationale: Little is known about the long-term impact of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection on children with asthma. Objectives: To determine whether SARS-CoV-2 infection affects symptom control and lung function in children with asthma. Methods: Using data from clinical registries and the electronic health record, we conducted a prospective case-control study of children with asthma aged 6-21 years who had (cases) or did not have (control subjects) SARS-CoV-2 infection, comparing baseline and follow-up asthma symptom control and spirometry within an ∼18-month time frame and, for cases, within 18 months of acute coronavirus disease (COVID-19). Results: A total of 171 cases had baseline and follow-up asthma symptom data, and 114 cases had baseline and follow-up spirometry measurements. There were no significant differences in asthma symptom control (P = 0.50), forced expiratory volume in 1 second (P = 0.47), forced vital capacity (P = 0.43), forced expiratory volume in 1 second/forced vital capacity (P = 0.43), or forced expiratory flow, midexpiratory phase (P = 0.62), after SARS-CoV-2 infection. Compared with control subjects (113 with symptom data and 237 with spirometry data), there were no significant differences in follow-up asthma symptom control or lung function. A similar proportion of cases and control subjects had poorer asthma symptom control (17.5% vs. 9.7%; P = 0.07) or worse lung function (29.0% vs. 32.5%; P = 0.50) at follow-up. Patients whose asthma control worsened after COVID-19 had a shorter time to follow-up (3.5 [1.5-7.5] vs. 6.1 [3.1-9.8] mo; P = 0.007) and were more likely to have presented with an asthma exacerbation during COVID-19 (46% vs. 26%; P = 0.04) than those without worse control. Conclusions: We found no significant differences in asthma symptom control or lung function in youth with asthma up to 18 months after acute COVID-19, suggesting that COVID-19 does not affect long-term asthma severity or control in the pediatric population.