Predicting emergency department visits among children with asthma in two academic medical systems.

Objective: To develop and validate a predictive algorithm that identifies pediatric patients at risk of asthma-related emergencies, and to test whether algorithm performance can be improved in an external site via local retraining.Methods: In a retrospective cohort at the first site, data from 26 008 patients with asthma aged 2-18 years (2012-2017) were used to develop a lasso-regularized logistic regression model predicting emergency department visits for asthma within one year of a primary care encounter, known as the Asthma Emergency Risk (AER) score. Internal validation was conducted on 8634 patient encounters from 2018. External validation of the AER score was conducted using 1313 pediatric patient encounters from a second site during 2018. The AER score components were then reweighted using logistic regression using data from the second site to improve local model performance. Prediction intervals (PI) were constructed via 10 000 bootstrapped samples.Results: At the first site, the AER score had a cross-validated area under the receiver operating characteristic curve (AUROC) of 0.768 (95% PI: 0.745-0.790) during model training and an AUROC of 0.769 in the 2018 internal validation dataset (p = 0.959). When applied without modification to the second site, the AER score had an AUROC of 0.684 (95% PI: 0.624-0.742). After local refitting, the cross-validated AUROC improved to 0.737 (95% PI: 0.676-0.794; p = 0.037 as compared to initial AUROC).Conclusions: The AER score demonstrated strong internal validity, but external validity was dependent on reweighting model components to reflect local data characteristics at the external site.

Modifiable factors related to transition readiness in adolescents and young adults with epilepsy.

OBJECTIVE: To characterize transition readiness in adolescents and young adults (AYAs) with epilepsy and validate the social-ecological model of AYA readiness to transition (SMART) in a sample of AYAs with epilepsy. METHODS: This cross-sectional study included typically developing youth with epilepsy 13-25 years old seen in a comprehensive epilepsy center. Adolescents and young adults completed measures of transition readiness (Transition Readiness Assessment Questionnaire; TRAQ), epilepsy knowledge, epilepsy self-management, developmental factors, and emotional and behavioral functioning. Adolescents and young adults also completed a measure of their relationship quality with healthcare providers. Caregiver report was included when available. RESULTS: Participants included 82 AYAs (Mage = 17.3 ±â€¯2.8; 86.6% White Non-Hispanic, 53.7% females) with epilepsy. Transition Readiness Assessment Questionnaire scores (M = 3.33, SD = 0.86) were correlated with modifiable and non-modifiable factors: age (r = 0.66, p < 0.001), income (r = -0.23, p = 0.04), AYA cognitive problems (r = 0.24, p = 0.03), AYA knowledge (r = 0.31, p = 0.005), AYA expectations (r = 0.26, p ≤ 02), AYA inattention (r = -0.24, p = 0.03), AYA executive dysfunction (r = 0.25, p = 0.02), caregiver-reported AYA odd behaviors (r = -0.25, p = 0.036), and caregiver-reported AYA communication problems (r = 0.25, p = 0.04). Transition Readiness Assessment Questionnaire scores were higher in AYAs who had seen adult providers for general healthcare issues (e.g., primary care), but were not related to other demographic (e.g., minority status, insurance), medical (years since diagnosis, type of epilepsy, polytherapy, seizure frequency), developmental (e.g., adaptive skills, cognitive functioning) or emotional/behavioral factors (e.g., skills, relationship with the provider, psychosocial functioning). Linear regression including variables significantly correlated with the outcome of transition readiness (F (7, 59) = 9.70, p < 0.001) explained 54% of the variance. Specifically, age was the only significant model predictor. SIGNIFICANCE: Transition readiness in AYAs with epilepsy was predicted by non-modifiable (e.g., age) and correlated with modifiable factors (e.g., knowledge, psychosocial/cognitive functioning). Providers must better prepare patients prior to transfer, and future research should use an epilepsy-specific measure of transition readiness to identify targets for intervention.

Pilot Executive Functioning Intervention in Epilepsy: Behavioral and Quality of Life Outcomes.

OBJECTIVE: To examine changes in emotional and behavioral functioning and health-related quality of life (HRQOL) following a web-based executive functioning (EF) intervention open pilot trial (e.g., Epilepsy Journey) for adolescents with epilepsy. METHODS: Adolescents with an established diagnosis of epilepsy, EF deficits, and without developmental disorders participated in a single-arm trial of Epilepsy Journey. Epilepsy Journey is a gamified, online learning environment comprised of 10 learning modules targeting EF deficits (e.g., working memory, organization) and tailored to epilepsy with accompanying telehealth problem-solving sessions. Adolescents completed questionnaires assessing emotional and behavioral functioning and HRQOL at baseline, posttreatment, and 2 follow-ups . Longitudinal mixed models and logistic regression analyses were used for these secondary analyses. RESULTS: 39 adolescents were recruited for Epilepsy Journey (Mage=15.3 years; 67% female; 87% White: Non-Hispanic; 39% experienced seizures in the past 3 months). Preliminary data indicate significant improvements in caregiver-reported Externalizing symptoms, Behavioral Symptom Index scores and Adaptive Skills from baseline to 5-month follow-up. Significant improvements were observed for caregiver-reported Mood/Behavior and self-reported Impact, Cognitive Functioning, Executive Functioning, and Sleep subscales of the PedsQL Epilepsy Module. Clinically significant improvements (e.g., clinical/at-risk to normative levels) in behavioral and quality of life domains were also noted. CONCLUSION: Epilepsy Journey appears to contribute to changes in emotional and behavioral functioning and HRQOL in adolescents with epilepsy. Given the proof of concept trial format of this study, an important future direction is to conduct a randomized controlled trial with a larger, generalizable cohort of adolescents with epilepsy.

Epilepsy Journey: A proof of concept trial of a Web-based executive functioning intervention for adolescents with epilepsy.

OBJECTIVE: To examine the preliminary feasibility and acceptability of a Web-based program, Epilepsy Journey, to improve executive function behaviors in adolescents with epilepsy. METHODS: We conducted a proof of concept single-arm pilot trial of Epilepsy Journey with 31 adolescents (average age = 15.3 ± 1.3 years) who had an epilepsy diagnosis and executive function (EF) deficits on the caregiver-report version of the Behavior Rating Inventory of Executive Function (BRIEF). Epilepsy Journey coupled a gamified problem-solving website comprised of 10 learning modules targeting EF deficits (eg, working memory, organization, problem-solving) with Skype sessions with a trained therapist. Outcomes included feasibility (attrition, sessions completed) and acceptability (satisfaction ratings). Exploratory analyses examined changes in caregiver-, self-, and teacher-reported BRIEF scores from baseline to posttreatment and at 2- and 5-month follow-ups. RESULTS: Seventy-nine percent of participants completed the program. Satisfaction was high, with 97% of caregivers and adolescents rating the program as helpful and indicating they would recommend it to others. Caregivers and adolescents reported global improvements on the BRIEF, with caregivers reporting significant improvements on all BRIEF subscales. EF symptoms rebounded slightly between the 2- and 5-month follow-ups for some of the self- and caregiver-reported BRIEF scales. Notably, clinically meaningful improvements (eg, clinical/subclinical to normative levels) were reported for several caregiver-reported BRIEF subscales, including the Global Executive Composite (62% to 33-34%) and Metacognitive Index (74% to 41-42%) from baseline to 2- and 5-month follow-up. SIGNIFICANCE: Findings suggest that a Web-based problem-solving intervention tailored to EF deficits for adolescents with epilepsy is both feasible and acceptable and may contribute to improvements in EF behaviors across domains.

Quality of life improves with integrated behavioral health services in pediatric new-onset epilepsy.

The current study compared differences in health-related quality of life (HRQOL) between youth with new-onset epilepsy with and without elevated psychological symptoms at time of epilepsy diagnosis within an integrated behavioral health and epilepsy service. Patients received both behavioral health and epilepsy care during clinic visits. A retrospective chart review was conducted between July 2011 and December 2015. Caregivers completed the Behavior Assessment System for Children-2: Parent Rating Scale (BASC-2: PRS) to assess psychological symptoms at the diagnostic visit, along with completing the Pediatric Quality of Life Inventory (PedsQL™ 4.0) at the diagnostic visit and each subsequent epilepsy clinic visit during the first year of treatment. Latent growth curve modeling was used to identify HRQOL changes over the first year of treatment. Health-related quality of life was significantly lower for youth with elevated psychological symptoms at diagnosis and over the first year of treatment compared with those without psychological symptoms. For those with elevated internalizing, inattention, withdrawal, and atypical symptoms at diagnosis, greater HRQOL improvements were detected over the first year of treatment compared with those without elevated psychological symptoms at the diagnostic visit. Within integrated behavioral health and epilepsy routine care, targeted psychological interventions can improve HRQOL over the first year of treatment, particularly for those with premorbid psychological symptoms.

Allocation of Treatment Responsibility in Adolescents With Epilepsy: Associations With Cognitive Skills and Medication Adherence.

Objectives: To describe allocation of treatment responsibility (ATR) in adolescents with epilepsy, investigate associations between cognitive skills and ATR, and examine whether ATR for antiepileptic drugs (AEDs) predicted electronically monitored adherence. Method: Sixty adolescents with epilepsy and their caregivers completed the Allocation of Treatment Responsibility Scale and a battery of self-report measures. Medical chart review data and electronically monitored AED adherence were collected for 1 year. Descriptive data assessed ATR for caregivers and adolescents; multivariate hierarchical regressions tested associations between variables. Results: ATR for labs and clinic appointments was greatest for caregivers, while ATR for AEDs was more likely to be shared between caregiver and adolescent. Poorer attention was associated with greater caregiver responsibility for AEDs. Greater caregiver responsibility for AEDs was associated with higher electronically monitored adherence over 12 months. Conclusions: In adolescents with epilepsy, caregivers are responsible for most treatment tasks, although responsibility for taking medication was shared with the adolescent. Greater caregiver responsibility for medication results in better long-term AED adherence. ATR is an important construct that warrants further attention in research and clinical practice, especially in the context of transition and health outcomes in pediatric epilepsy.

Antiepileptic drug behavioral side effects and baseline hyperactivity in children and adolescents with new onset epilepsy.

OBJECTIVE: To examine baseline psychological functioning and antiepileptic drug (AED) behavioral side effects in new onset epilepsy and determine, by age, whether baseline psychological functioning predicts AED behavioral side effects 1 month following AED initiation. METHODS: A retrospective chart review was conducted between July 2011 and December 2014 that included youths with new onset epilepsy. As part of routine interdisciplinary care, caregivers completed the Behavior Assessment System for Children, 2nd Edition: Parent Rating Scale to report on baseline psychological functioning at the diagnostic visit and the Pediatric Epilepsy Side Effects Questionnaire to identify AED behavioral side effects at the 1-month follow-up clinic visit following AED initiation. Children (age = 2-11 years) and adolescents (age = 12-18 years) were examined separately. RESULTS: A total of 380 youths with new onset epilepsy (Mage  = 8.9 ± 4.3 years; 83.4% Caucasian; 34.8% focal epilepsy, 41.1% generalized epilepsy, 23.7% unclassified epilepsy) were included. Seventy percent of youths had at-risk or clinically elevated baseline psychological symptoms. Children had significantly greater AED behavioral side effects (M = 25.08 ± 26.36) compared to adolescents (M = 12.36 ± 17.73), regardless of AED. Valproic acid demonstrated significantly greater behavioral side effects compared to all other AEDs, with the exception of levetiracetam. Higher hyperactivity/impulsivity at baseline significantly predicted higher AED behavioral side effects 1 month after AED initiation in both age groups. SIGNIFICANCE: Younger children seem to be more prone to experience behavioral side effects, and these are likely to be higher if youths with epilepsy have baseline hyperactivity/impulsivity. Baseline psychological screening, specifically hyperactivity, can be used as a precision medicine tool for AED selection.

Adherence to antiepileptic drugs in adolescents with epilepsy.

INTRODUCTION: The aims of the current study were to identify patterns and predictors of adherence in adolescents with epilepsy over one year, as well as its impact on seizures and health-related quality of life (HRQOL). METHODS: Forty-eight adolescents with epilepsy (Mage=14.8+1.5, 69% female, 73% White: NonHispanic) and their caregivers completed questionnaires assessing demographics, epilepsy knowledge, side effects, adherence barriers, family functioning, and HRQOL at quarterly clinic visits over one year. Adherence was monitored electronically via MEMS TrackCaps. Seizures were determined via chart review. RESULTS: Baseline adherence was 86.05% and significantly decreased over 12months (b=-2.07, p<0.001). Higher adherence was predicted by higher socioeconomic status (SES) (b=0.04, p<0.05), more side effects (b=0.06, p<0.01), fewer caregiver-reported adherence barriers (b=0.18, p<0.05), and lower family conflict (b=-0.19, p<0.05). Change in adherence over 12months did not significantly predict HRQOL or seizures. CONCLUSIONS: This is the first longitudinal study of objective adherence in adolescents with epilepsy. Given adolescence is a period of vulnerability during development, including declining adherence, caregivers are encouraged to continue collaborating with their adolescents around epilepsy management. Adherence barriers represent an ideal target for intervention and can be implemented in the clinic by frontline providers. Multidisciplinary care can address low SES (social work, financial advocates) and family conflict (psychologists, therapists) in patients with the ultimate goal of optimizing adherence and health outcomes.

Adherence barriers in pediatric epilepsy: From toddlers to young adults.

OBJECTIVE: The objectives of this study were to examine the continuity of adherence barriers across stages of development in pediatric epilepsy and to assess the differential influence of barriers on several important clinical outcomes from early childhood to young adulthood, including adherence, seizures, and health-related quality of life (HRQOL). METHOD: A developmentally representative sample of youth 2-25years with epilepsy was obtained by combining data from five different studies. A total of 269 caregivers and 77 adolescents and young adults were included in this investigation. Participants completed measures of adherence barriers and HRQOL. An electronic monitoring system was used to assess adherence to the primary antiepileptic drug over 30days. The prevalence of individual barriers across development and their relative importance as predictors of clinical outcomes were examined. RESULTS: Adherence barriers are characterized by both continuity and discontinuity from early childhood to early adulthood. Barriers such as disliking the taste of medication, parent forgetfulness, and refusal to take medications were significantly more salient during certain developmental periods. No significant differences across age groups were found for other barriers, including difficulty getting to the pharmacy and embarrassment. Certain adherence barriers, such as running out of medications, were more important to particular clinical outcomes despite being low prevalence. Adherence barriers differentially predicted adherence, seizure control, and HRQOL based on developmental stage. CONCLUSION: Routine assessment of adherence barriers is imperative from toddlerhood to young adulthood given that the prevalence of barriers and their relative influence on important health outcomes vary by developmental stage. Adherence intervention efforts should be targeted, developmentally tailored, and focused on those barriers that are most predictive of poor outcomes for a given developmental period.

Rebellious Behaviors in Adolescents With Epilepsy.

Objectives: The study aims are to (1) examine the prevalence of risk-taking (i.e., behaviors that can be categorized as rebellious or reckless) and (2) determine the influence of risk-taking on adherence, seizures, and health-related quality of life (HRQOL) in adolescents with epilepsy. An exploratory aim was to identify predictors of risk-taking. Methods: Fifty-four adolescents with epilepsy (M = 15.33 ± 1.46 years) and caregivers completed questionnaires on demographics, risk-taking, parent-child relations, adolescent inattention/hyperactivity, and HRQOL at four time points across 1 year. Seizure occurrence and electronically monitored adherence were also collected. Results: Rebellious behaviors were normative and stable over 1 year in adolescents with epilepsy. Higher rebelliousness was related to poorer adolescent-reported memory HRQOL. The only significant positive predictor of rebellious behaviors was adolescent age. Conclusions: Adolescents with epilepsy endorsed normative levels of rebelliousness, which is negatively related to HRQOL. Older adolescents may warrant clinical attention.

Implementation of psychological clinical trials in epilepsy: Review and guide.

The International League Against Epilepsy (ILAE) Neuropsychiatry commission and United States Institute of Medicine report both identified cognitive and psychological comorbidities as a significant issue for individuals with epilepsy, with rates as high as 60%. However, there is a paucity of evidence-based treatments for many psychological conditions (e.g., learning disorders, cognitive disorders, behavioral disorders). Because of inherent challenges in the implementation of psychological therapy trials and specific considerations for the population with epilepsy, the focus of the current review was to provide guidance and recommendations to conduct psychological trials for individuals with epilepsy. Several key areas will be discussed, including selection of patients, trial design, psychological intervention considerations, outcomes and evaluation of results, publication of trial results, and special issues related to pediatric clinical trials. Rigorously designed psychological therapy trials will set the stage for evidence-based practice in the care of individuals with epilepsy, with the goal of improving seizures, side effects, and HRQOL.

Development of a web-based executive functioning intervention for adolescents with epilepsy: The Epilepsy Journey.

INTRODUCTION: Youth with epilepsy exhibit significant deficits in executive functioning (EF), yet there are few interventions to improve EF for adolescents. The aims of the current study were to develop an individually-tailored intervention, called Epilepsy Journey, to improve aspects of EF through an iterative, patient-centered process including focus groups and usability testing. METHODS: Five adolescents and caregivers participated in focus groups. This input was used to develop ten learning modules based on subscales of the Behavioral Rating Inventory of Executive Functions and key issues that may impact EF in adolescents. Six adolescents participated in usability testing and a usability expert conducted a heuristic evaluation. Demographic information, chart reviews and measures of EF were also completed. RESULTS: Focus group participants and their parents reported difficulties with memory, attention, organization, monitoring, initiation, impulsivity, emotional control, sleep, awareness in schools and managing stress. They also identified successful strategies to address memory and organizational difficulties. Usability testing of the resultant Epilepsy Journey modules revealed problems with navigation and identified features that promoted usability, including progress bars and interactive modules. Program modifications were made after each usability trial resulting in a relatively brief, interactive and readily navigable program. Perceived utility was high with all but one participant. Participants rated the content as helpful and indicated they would recommend Epilepsy Journey to others. CONCLUSIONS: Feedback from the focus group and usability testing yielded a feasible, acceptable, relevant and user-friendly web-based intervention for adolescents with epilepsy. The Epilepsy Journey program will be further tested in an open pilot with adolescents with epilepsy and associated EF deficits.

The most common types of nontraumatic dental conditions among emergency department visits in North Carolina before and during the COVID-19 pandemic.

BACKGROUND: This study aimed to identify the most common types of nontraumatic dental conditions (NTDCs) before and during the COVID-19 pandemic and assess the variations in the most common NTDCs by patient age groups and rural or urban locations and the impact of COVID-19 on emergency department (ED) visits for NTDCs in North Carolina. METHODS: The authors conducted a retrospective data analysis of ED data from the North Carolina Disease Event Tracking and Epidemiology Collection Tool. The authors estimated the proportions of NTDCs of all ED visits in 2019 and 2021 and ranked the proportions of the major categories of NTDCs by age groups and rural or urban locations. They used a multiple logistic regression model to assess the impact of COVID-19 on NTDCs. RESULTS: By the first diagnosis, the proportion of NTDCs dropped from 1.1% in 2019 to 0.99% in 2021 (P < .001). Caries was specified as the third most common NTDC. Oral infection was the top NTDC among young (≤ 17 years) and older patients (≥ 65 years). No significant differences were found in NTDCs between rural and urban areas (P = .68). Children younger than 2 years (adjusted odds ratio, 4.36) and adults aged 18 through 44 years (adjusted odds ratio, 4.54) were more likely to visit the ED for NTDCs than those 75 years and older. CONCLUSIONS: The proportion of NTDCs seen at the ED was lower during the COVID-19 pandemic in 2021 than in 2019. The common NTDCs varied by age group but were similar in rural and urban areas. The most common NTDCs were related to toothache, oral infection, and caries. PRACTICAL IMPLICATIONS: More efforts are needed to reduce ED visits for NTDCs.

Gender, ethnicity differences in mental health status and COVID-19 vaccine intention among U.S. College students during COVID-19 pandemic.

Objective: To examine mental health status, COVID-19 vaccine intention and barriers among college students in the U.S. Participants: Students (n = 337) registered at a large public university in 2021. Methods: Cross-sectional survey data were collected online and analyzed using independent samples t test, chi-square test, and one-way ANOVA. Results: Compared to male students, females reported greater anxiety (p < .05) and fear (p < .01). Hispanic participants reported increased anxiety level and the least positive pandemic coping strategies (both p < .05) across the ethnic groups. Black students were the racial group with the lowest trust in the safety and effectiveness of COVID-19 vaccine (p < .05). Vaccine intention was positively correlated with factors such as vaccine safety measures, and perceptions toward vaccination (both p < .001). Conclusions: These gender- and ethnicity- based mental health struggles should be addressed immediately for better health and vaccine promotion outcomes amid the COVID-19 pandemic.

Distance from the endocrinology clinic and diabetes control in a rural pediatric population.

OBJECTIVE: We analyzed the impact of geographic distance from the clinic on adherence to recommended clinic visits and diabetes control among patients with type 1 diabetes (T1D) seen in a pediatric endocrinology clinic serving a rural region in eastern North Carolina. METHODS: We retrospectively included patients with T1D age ≤20 years seen in our clinic during 2017. Outcomes were tracked until June 2018. Distance from the clinic was determined according to the zone improvement plan (ZIP) code of patient address. Visit adherence was defined based on the number of attended visits during the study period, aiming for 1 every 3 months. Glycated hemoglobin (HbA1c) was measured at the first and last visits during the review period. RESULTS: The analysis included 368 patients, of whom 218 (59%) completed at least 1 visit every 3 months. The median HbA1c was 9.1 (interquartile range [IQR]: 8.0, 10.3) at the initial visit, and 9.3 (IQR: 8.0, 11.1) at the final visit. Median distance from the clinic was 56 km (IQR: 35, 86). On multivariable logistic regression, greater distance from the clinic was associated with lower odds of visit adherence (odds ratio per 10 km: 0.93; 95% confidence interval: 0.87, 0.99; p=0.030). Neither distance to the clinic nor clinic visit adherence were associated with HbA1c. CONCLUSIONS: Patients living further away from the clinic were less likely to adhere to the recommended visit schedule, but distance was not correlated with HbA1c levels. Further work is needed to assist families living far from the clinic with adhering to recommended visits.

Improving Uptake of Hydroxyurea in Patients with Sickle Cell Disease: A Retrospective Study of a Clinic-based Change in Consenting Practices.

INTRODUCTION: Sickle cell disease (SCD) can shorten lives and may result in severe clinical complications. Hydroxyurea (HU) is inexpensive, widely available, and National Institutes of Health (NIH) recommends HU for SCD. Despite these benefits, utilization of HU is low. Barriers to taking HU include inaccurate perceptions of serious side effects such as hair loss, a significant barrier in the African American community. However, at doses for treating SCD, the incidence of side effects is extremely low. Using a retrospective medical record review, the impact of a revised consent procedure for HU that addressed these barriers was evaluated. METHODS: SCD patients 2-20yo eligible for HU were examined. Patients prescribed HU versus those not prescribed HU were compared one year before and one year after revising consent procedures. RESULTS: Change in clinic practice (including revised consent procedures) resulted in 158% more patients agreeing to HU therapy (p<.001). DISCUSSION: The revised consent procedures are not resource intensive and easy to implement. Future research should address treatment acceptability, intimidation, and cultural sensitivity.

National Trends in Pediatric Headache and Associated Functional Limitations.

Objective. Frequent or severe headaches are associated with school absenteeism and functional limitation in children, but trends in headache prevalence are uncertain. We used nationally representative data to describe trends in pediatric headache prevalence in the United States, and to evaluate whether headache has remained consistently associated with functional limitations among school-age children. Methods. We analyzed data on children age 5 to 17 years in the 2007 to 2015 National Health Interview Surveys. Caregivers reported whether each child experienced frequent or severe headache in the past 12 months. Weighted proportions and multivariable regression were used to estimate headache prevalence over the study period and associations between headache and measures of functional limitation. Results. The analysis included 57 272 children (mean age = 11 years; 52% female). Frequent or severe headache was reported for 6% of children, with no discernable trend over the study period. On multivariable Poisson regression, headache became more strongly associated with school absenteeism over time. In 2007, frequent or severe headache was associated with a 70% increase in the number of missed school days (incidence risk ratio [IRR] = 1.70; 95% confidence interval [CI] = 1.50-1.91; P < .001), whereas by 2015, headache was associated with a 139% increase in the number of missed school days (IRR = 2.39; 95% CI = 2.02-2.83; P < .001). Conclusion. Though the prevalence of frequent or severe headache in school-age children did not change in 2007 to 2015, headache became more strongly associated with school absenteeism, highlighting the need for improved management of patients with headaches to prevent negative impact on school performance and functional status.