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.

How to Provide Sexual and Reproductive Health Care to Patients: Focus Groups With Rheumatologists and Rheumatology Advanced Practice Providers.

OBJECTIVE: Rheumatologists have identified challenges to providing sexual and reproductive health (SRH) care to patients with gestational capacity. We conducted focus groups with rheumatologists and rheumatology advanced practice providers (APPs) to elicit their solutions to overcoming barriers to SRH care. METHODS: Qualitative focus groups were conducted with rheumatologists (3 groups) and APPs (2 groups) using videoconferencing. Discussions were transcribed and 2 trained research coordinators developed a content-based codebook. The coordinators applied the codebook to transcripts, and discrepancies were adjudicated to full agreement. The codes were synthesized and used to conduct a thematic analysis. Differences in codes were also identified between the clinician groups by provider type. RESULTS: A total of 22 clinicians were included in the sample, including 12 rheumatologists and 10 APPs. Four themes emerged: (1) clinicians recommended preparing patients to engage in SRH conversations before and during clinic visits; (2) consultation systems are needed to facilitate rapid SRH care with women's health providers; (3) clinicians advised development of training opportunities and easy-to-access resources to address SRH knowledge gaps; and (4) clinicians recommended that educational materials about SRH in the rheumatology context are provided for patients. Although similar ideas were generated between the APP and rheumatologist groups, the rheumatologists were generally more interested in additional training and education, whereas APPs were more interested in electronic health record prompts and tools. CONCLUSION: Providers identified many potential solutions and facilitators to enhancing SRH care in rheumatology that might serve as a foundation for intervention development.

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.

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.

A retrospective textual analysis of sexual and reproductive health counseling for adolescent and young adult people with epilepsy of gestational capacity.

Rationale The American Academy of Neurology (AAN) recommends annual sexual and reproductive health (SRH) counseling for all people with epilepsy of gestational capacity (PWEGC). Child neurologists report discussing SRH concerns infrequently with adolescents. Limited research exists regarding documentation of such counseling. METHODS: We retrospectively studied clinical notes using natural language processing to investigate child neurologists' documentation of SRH counseling for adolescent and young adult PWEGC. We segmented notes into sentences and evaluated for references to menstruation, sexual activity, contraception, folic acid, teratogens, and pregnancy. We developed training sets in a labeling application and used machine learning to identify additional counseling instances. We repeated this iteratively until we identified no new relevant sentences. We validated results using external reviewers; after removing sentences reviewers disagreed on (n = 13/400), we calculated Cohen's kappa values between the model and reviewers (>0.98 for all categories). We evaluated labeled texts for each patient per calendar year with descriptive statistics and logistic regression, adjusting for race/ethnicity, age, and teratogen use. RESULTS: Data comprised 971 PWEGC age 13-21 years with 2277 patient-years and 3663 outpatient child neurology notes. Nearly half of patient-years lacked SRH counseling documentation (49.1%). Among all patients, 38.0% never had SRH counseling documented. Documentation was present regarding menstruation in 26.7% of patient-years, folic acid in 25.0%, contraception in 21.9%, pregnancy in 3.5%, teratogens in 3.0%, and sexual activity in 1.8%. Documentation regarding menstruation and contraception was associated with prescription of antiseizure medications that have a higher risk of teratogenic effects (OR = 1.27, p = 0.020, 95% CI = [1.04,1.54]; OR = 1.27, p = 0.027, 95% CI = [1.03,1.58]). Documentation regarding contraception, folic acid, and sexual activity was increased among older patients (OR = 1.28, p < 0.001, 95% CI = [1.21,1.35]; OR = 1.26, p < 0.001, 95% CI = [1.19,1.32]; OR = 1.26, p = 0.004, 95% CI = [1.08,1.47]). Documentation regarding sexual activity was decreased among patients identifying as White/Non-Hispanic (OR = 0.39, p = 0.007, 95% CI = [0.20,0.78]). CONCLUSION: Child neurologists counsel PWEGC on SRH less frequently than recommended by the AAN based on documentation.

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.

Sexual and Reproductive Health Care Experiences and Perceptions of Women with Congenital Heart Disease.

Due to medical advances, women with congenital heart disease (CHD) are living longer, healthier lives and many are considering pregnancy. The hemodynamic changes of pregnancy present high risks of morbidity and mortality for many women with CHD. As little is known about these women's reproductive health experiences, this study explores their perceptions of pregnancy and family planning care as related to CHD. Women ages 18-45 years with a diagnosis of CHD associated with a World Health Organization (WHO) classification II-IV for pregnancy morbidity and mortality participated in individual, semi-structured interviews exploring their experiences, attitudes, and preferences toward parenthood, pregnancy, contraception and family planning care provision. Interviews were audio-recorded, transcribed verbatim. Two independent coders performed analysis using deductive and inductive coding approaches. Twenty women with CHD participated in interviews (average age 30.1 years, SD 5.85). Nine women had a prior pregnancy and 14 considered becoming a parent in the future. We identified 5 key themes among the women: (1) CHD impacted their reproductive health goals and decisions; (2) Women with CHD perceived a lack of safe contraceptive methods for their condition; (3) Women desired tailored, disease-specific sexual and reproductive health (SRH) information; (4) Women viewed their cardiologist as the primary source for SRH information and prefer provider-initiated discussions starting in adolescence; and (5) Women desire coordinated pre-pregnancy and intrapartum care between their cardiologists and women's health providers. These results provide a foundation for interventions to improve patient-centered interdisciplinary reproductive healthcare for this population.

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.

Asthma as a risk factor for hospitalization in children with COVID-19: A nested case-control study.

BACKGROUND: Most pediatric studies of asthma and COVID-19 to date have been ecological, which offer limited insight. We evaluated the association between asthma and COVID-19 at an individual level. METHODS: Using data from prospective clinical registries, we conducted a nested case-control study comparing three groups: children with COVID-19 and underlying asthma ("A+C" cases); children with COVID-19 without underlying disease ("C+" controls); and children with asthma without COVID-19 ("A+" controls). RESULTS: The cohort included 142 A+C cases, 1110 C+ controls, and 140 A+ controls. A+C cases were more likely than C+ controls to present with dyspnea and wheezing, to receive pharmacologic treatment including systemic steroids (all p < .01), and to be hospitalized (4.9% vs. 1.7%, p = .01). In the adjusted analysis, A+C cases were nearly 4 times more likely to be hospitalized than C+ controls (adjusted OR = 3.95 [95%CI = 1.4-10.9]); however, length of stay and respiratory support level did not differ between groups. Among A+C cases, 8.5% presented with an asthma exacerbation and another 6.3% developed acute exacerbation symptoms shortly after testing positive for SARS-CoV-2. Compared to historic A+ controls, A+C cases had less severe asthma, were less likely to be on controller medications, and had better asthma symptom control (all p < .01). CONCLUSIONS: In our cohort, asthma was a risk factor for hospitalization in children with COVID-19, but not for worse COVID-19 outcomes. SARS-CoV-2 does not seem to be a strong trigger for pediatric asthma exacerbations. Asthma severity was not associated with higher risk of COVID-19.

Development and psychometric analysis of the Diabetes Device Confidence Scale for school nurses.

BACKGROUND: School nurses need to be equipped to help students with diabetes devices. No existing tools assess school nurse self-efficacy in using devices. OBJECTIVE: To develop and evaluate the psychometric properties of a novel scale to measure school nurse confidence with diabetes devices. RESEARCH DESIGN AND METHODS: We generated a list of items with community partners and examined logical validity. We then revised and distributed the item set to school nurses in Pennsylvania to examine aspects of structural validity, convergent validity, and internal consistency reliability. We used item response theory to refine the scale. RESULTS: Facilitated discussion with collaborators generated an initial list of 50 potential items. Based upon the item-content validity index, we revised/eliminated 13 items. School nurses (n = 310) in Pennsylvania completed an updated 38-item scale; the majority had experience with insulin pumps or continuous glucose monitors. Exploratory factor analysis identified a one-factor solution, suggesting a unidimensional scale. We eliminated 13 additional items based upon significant inter-item correlation or skewed response patterns. Item response theory did not identify additional candidate items for removal. Despite a high degree of redundancy (Cronbach's alpha > 0.90), we retained all remaining items to maximize the future utility of the scale. CONCLUSION: The 25-item, unidimensional Diabetes Device Confidence Scale is a new tool to measure school nurse confidence with diabetes devices. This scale has future clinical, programmatic, and research applications. Combined with knowledge assessments, this scale can serve to evaluate school nurse device use readiness, assess training gaps, and tailor interventions.

Preferences and experiences of women with epilepsy regarding sexual and reproductive healthcare provision.

RATIONALE: Women with epilepsy (WWE) have unique disease-specific considerations regarding their sexual and reproductive health (SRH), which impact decision-making around pregnancy and contraception. Understanding their perspectives, preferences, and experiences regarding SRH care contributes to optimizing patient-centered clinical practice. METHODS: We conducted individual semi-structured interviews with WWE aged 18-45 years, exploring their SRH care experiences and preferences. We audio-recorded and transcribed all interviews. Two coders used both inductive and deductive strategies to perform thematic analysis and identify key themes and representative quotes. RESULTS: Twenty WWE completed interviews (median age 23 years; range 18-43 years). Key themes included: 1) SRH counseling from neurologists often did not occur, was limited in scope, or contained misinformation, especially during adolescence and early adulthood. In particular, participants felt that they received poor counseling about contraception, fertility, folic acid, and teratogenic medications, which impacted their reproductive decision-making. 2) WWE report fragmented care between their neurologist and other SRH providers. 3) WWE prefer that their neurologists initiate routine comprehensive discussions about SRH. 4) Conversations about SRH should begin in adolescence and include private confidential discussions between neurologists and WWE. 5) Successful SRH conversations between neurologists and WWE involve detailed information, reassurance, and support for the patient's reproductive goals. CONCLUSION: WWE desire comprehensive, coordinated counseling and care regarding SRH and epilepsy, and often experience suboptimal SRH care. Better understanding of the SRH needs, preferences, and experiences of WWE will help inform interventions to optimize patient-centered SRH counseling and care by healthcare professionals, especially during adolescence.

A Framework for Femtech: Guiding Principles for Developing Digital Reproductive Health Tools in the United States.

The United States has abysmal reproductive health indices that, in part, reflect stark inequities experienced by people of color and those with preexisting medical conditions. The growth of "femtech," or technology-based solutions to women's health issues, in the public and private sectors is promising, yet these solutions are often geared toward health-literate, socioeconomically privileged, and/or relatively healthy white cis-women. In this viewpoint, we propose a set of guiding principles for building technologies that proactively identify and address these critical gaps in health care for people from socially and economically marginalized populations that are capable of pregnancy, as well as people with serious chronic medical conditions. These guiding principles require that such technologies: (1) include community stakeholders in the design, development, and deployment of the technology; (2) are grounded in person-centered frameworks; and (3) address health disparities as a strategy to advance health equity and improve health outcomes.

Pediatric Subspecialists' Practices and Attitudes Regarding Sexual and Reproductive Healthcare for Adolescent and Young Adult Women Prescribed Teratogenic Medications.

OBJECTIVE: To evaluate pediatric subspecialists' practices and attitudes regarding sexual and reproductive healthcare for adolescent and young adult women for whom they prescribe teratogens. STUDY DESIGN: We surveyed pediatric subspecialists at 1 tertiary care pediatric hospital. Items assessed attitudes and practices related to sexual and reproductive healthcare for adolescent and young adult women prescribed teratogens, and barriers and facilitators to sexual and reproductive healthcare provision. We used descriptive statistics, χ2 tests, and logistic regression to analyze results. RESULTS: There were 200 subspecialists from 17 subspecialties who completed the survey; 77% reported prescribing teratogens to adolescent and young adult women and 18% reported caring for a patient who became pregnant while taking a teratogen. Overall, 99% indicated that it is important to address sexual and reproductive healthcare. Respondents endorsed confidence in sexual and reproductive healthcare skills, including contraceptive counseling (71%), although 29% never or rarely discuss sexual and reproductive healthcare, and one-third never speak privately to this population. Of providers who discuss sexual and reproductive healthcare, 26% never assess reproductive intentions and 36% do so less often than annually. Nearly one-half never or rarely ask about sexual activity, and 68% never or rarely assess contraceptive knowledge. Barriers to sexual and reproductive healthcare provision included available time (80%) and the presence of family or partners at clinic visits (61%). Facilitators included a quick referral process to sexual and reproductive healthcare providers (92%) and access to lists of local sexual and reproductive healthcare providers (90%). CONCLUSIONS: Pediatric subspecialists from a single institution report suboptimal sexual and reproductive healthcare provision for adolescent and young adult women prescribed teratogens. Identified barriers and facilitators may guide intervention development to improve sexual and reproductive healthcare for this population.

Sexual and reproductive health concerns of women with epilepsy beginning in adolescence and young adulthood.

BACKGROUND: Women with epilepsy (WWE) have potentially unique concerns regarding their sexual and reproductive health (SRH). Prior studies of WWE have focused narrowly on pregnancy and preconception experiences, and have not addressed concerns of nulliparous adolescent and young adult women not actively seeking pregnancy. METHODS: We conducted individual semi-structured interviews with WWE 18-45 years of age. We sampled to maximize diversity of age and parity, and intentionally included many adolescent and young adult nulliparous women not actively planning pregnancy. Interviews broadly addressed participants' SRH concerns and experiences. Interviews were audio-recorded and transcribed. Two coders performed qualitative analysis using thematic analysis with deductive and inductive approaches. RESULTS: Twenty WWE (median age 23 years, range 18-43 years) completed interviews. Twelve were nulliparous, six had children, one had a history of miscarriage only, and two were currently pregnant. WWE's narratives revealed significant concerns about family planning and reproductive health in the context of epilepsy, including: 1) seizures endangering pregnancies and children 2) teratogenic effects of antiseizure medication, 3) heritability of epilepsy, 4) antiseizure medication and epilepsy impacting fertility, and 5) interactions between antiseizure medication and contraception. CONCLUSION: WWE, including nulliparous adolescent and young adult women who are not actively planning pregnancy, have significant concerns about how their epilepsy interacts with SRH. SRH counseling for WWE should begin during adolescence and be incorporated into the transition process from pediatric to adult healthcare. Insights from WWE may aid in the creation of relevant patient-facing educational resources as well as provider-facing training and tools to meaningfully support the reproductive decision-making of WWE throughout their childbearing years.

A survey of child neurologists about reproductive healthcare for adolescent women with epilepsy.

OBJECTIVE: To evaluate child neurologists' knowledge, attitudes, and practices regarding sexual and reproductive health (SRH) care for adolescent and young adult women with epilepsy (WWE). METHODS: Child neurologists (including attending physicians, residents, fellows, and advanced practitioners) completed an online survey distributed through subspecialty listservs. We analyzed results using descriptive statistics, chi-square, and logistic regression. RESULTS: Two hundred eight child neurologists completed the survey. Most believed that child neurologists should counsel young WWE on: teratogenesis (99%, n = 206/207), contraception-antiseizure medication interactions (96%, n = 194/202), pregnancy (95%, n = 198/206), contraception (89%, n = 184/206) and folic acid supplementation (70%, n = 144/205). Fewer respondents felt confident with such counseling (teratogenesis: 90%, n = 188/208, drug interactions: 65%, n = 133/208, pregnancy 75%, n = 156/208, contraception: 47-64%, n = 96-134/208, p < 0.05). Ninety-five percent (n = 172/181) reported ever discussing SRH with typically developing young WWE, compared to 78% (n = 141/181) for young WWE with mild intellectual disability (p < 0.01). One third (n = 56/170) who ever discussed SRH did not do so routinely. Respondents correctly answered 87% ±â€¯5% of knowledge questions about SRH for WWE, 80% ±â€¯4% of questions about teratogenic antiseizure medications, and 61% ±â€¯7% of questions about contraception-antiseizure drug interactions. The greatest barrier to SRH care was time constraints (80%, n = 149/186). The majority (64%, n = 119/186) identified solutions including longer appointment times and co-managing SRH care with other specialties. CONCLUSIONS: Findings reveal gaps in SRH care by child neurologists for adolescent and young adult WWE, especially those with mild intellectual disability. Provider-identified barriers and solutions may serve as targets to improve SRH care for this population.

Evaluating the Impact of Stakeholder Engagement in a School-Based Type 1 Diabetes Study.

OBJECTIVE: Although the importance of stakeholder engagement (SE) for patient-centered research is recognized, few studies document SE processes and influence on research outcomes in the diabetes field. We applied a research-informed framework to evaluate the impact of SE on a pediatric diabetes study exploring school nurse perspectives on modern diabetes devices. METHODS: We recruited parents of children with type 1 diabetes, school nurses, and diabetes providers. Stakeholders convened virtually every 2 months for 12 months. Goals for SE included input on research materials, interpretation of findings, and future research directions. Processes were assessed using a validated survey. Immediate outcomes included changes to research materials and satisfaction. Secondary outcomes included research efficiency and value (acceptance by community partners). RESULTS: Each role was represented at every meeting. The majority of stakeholders (>70%) completed the survey at study midpoint and end points. All surveyed indicated that they had received all desired information, shared feedback, and felt valued. Stakeholders were satisfied with the meeting frequency. Participants appreciated learning from each other and expressed enthusiasm for continued research participation. They described their role as one of consultant rather than research team members. SE resulted in five additional interview questions. Nearly 70 comments added to the interpretation of qualitative themes. Findings were published within 12 months and recognized by the state school nursing organization. CONCLUSION: SE was well received and led to meaningful changes in content and dissemination of a diabetes study. A systematic approach to evaluating SE can increase scientific rigor and reproducibility and contribute to best practices for SE in diabetes research.

Modern diabetes devices in the school setting: Perspectives from school nurses.

OBJECTIVE: To explore the experiences, practices, and attitudes of school nurses related to modern diabetes devices (insulin pumps, continuous glucose monitors, and hybrid-closed loop systems). RESEARCH DESIGN AND METHODS: Semistructured interviews were conducted with 40 public school nurses caring for children in elementary and middle schools. Developed with stakeholder input, the interview questions explored experiences working with devices and communicating with the health care system. Deidentified transcripts were analyzed through an iterative process of coding to identify major themes. RESULTS: School nurses reported a range of educational backgrounds (58% undergraduate, 42% graduate), geographic settings (20% urban, 55% suburban, 25% rural), and years of experience (20% <5 years, 38%, 5-15 years, 42% >15 years). Four major themes emerged: (a) As devices become more common, school nurses must quickly develop new knowledge and skills yet have inconsistent training opportunities; (b) Enthusiasm for devices is tempered by concerns about implementation due to poor planning prior to the school year and potential disruptions by remote monitors; (c) Barriers exist to integrating devices into schools, including school/classroom policies, liability/privacy concerns, and variable staff engagement; and (d) Collaboration between school nurses and providers is limited; better communication may benefit children with diabetes. CONCLUSIONS: Devices are increasingly used by school-aged children. School nurses appreciate device potential but share structural and individual-level challenges. Guiding policy is needed as the technology progressively becomes standard of care. Enhanced training and collaboration with diabetes providers may help to optimize school-based management for children in the modern era.

Sexual and reproductive healthcare for adolescent and young adult women with epilepsy: A qualitative study of pediatric neurologists and epileptologists.

OBJECTIVE: The objective of this study was to explore the attitudes and practices of pediatric neurologists and epileptologists regarding sexual and reproductive healthcare for adolescent and young adult women with epilepsy (WWE). BACKGROUND: Adolescent and young adult WWE have unique sexual and reproductive healthcare needs, including counseling on teratogenesis, folic acid, and interactions between contraception and antiseizure medications. There are no prior studies regarding sexual and reproductive healthcare practices of pediatric neurologists or epileptologists. DESIGN/METHODS: Individual semi-structured interviews were conducted with pediatric neurologists and epileptologists regarding their attitudes, practices, and experiences with sexual and reproductive healthcare for adolescent and young adult WWE. Interviews were audio-recorded and transcribed verbatim. Qualitative analysis was conducted using a thematic analysis approach. RESULTS: Six child neurologists and 10 epileptologists (44% male) participated. Major themes included the following: (1) Sexual and reproductive healthcare is important for adolescent WWE, and neurologists have a key role in providing this care. (2) Sexual and reproductive healthcare should be comanaged with a primary care provider or women's health provider although neurologists have significant concerns regarding comanagement. (3) There is wide variability in sexual and reproductive healthcare practice among pediatric neurologists and epileptologists. Important subthemes included parent education and differences in sexual and reproductive healthcare practices for women with intellectual disabilities. (4) Many systemic and interpersonal barriers exist to delivering sexual and reproductive healthcare to adolescent and young adult WWE. Important barriers included limited time; provider, patient, or family discomfort; and lack of necessary knowledge or expertise. (5) Providers desire standardization of sexual and reproductive healthcare for adolescent WWE along with patient and provider education. CONCLUSION: This is the first study to assess attitudes and practices of pediatric neurologists and epileptologists regarding sexual and reproductive healthcare for adolescent and young adult WWE. Our findings suggest that there is a need for development of improved systems for sexual and reproductive healthcare delivery and comanagement for adolescent and young adult WWE. Providers identified many barriers and facilitators that might serve as the basis for interventions to improve care.