Prevalence of SARS-CoV-2 in newborns born to SARS-CoV-2-positive mothers at 2 weeks of life.

Introduction: Limited evidence exists on management recommendations for neonates born to SARS-CoV-2-positive mothers. This study looked at transmission risk of neonates presenting for primary care in a large regional health system within New York during the early months of the COVID-19 pandemic. Methods: This was a prospective, observational study of newborns born to SARS-CoV-2-positive mothers presenting at any of the 19 Northwell Health-Cohen Children's Medical Center primary care practices who underwent another oropharyngeal/nasopharyngeal swab for detection of SARS-CoV-2 by day of life (DOL) 14. Results: Among 293 newborns born to SARS-CoV-2-positive mothers who were negative at birth, 222 were retested at DOL 14, corresponding to times with different predominant strains. Of these, seven tested positive but had no symptoms. Conclusion: The overall low transmission rates and absence of symptomatic infection support the safety of direct breastfeeding after hospital discharge with appropriate hand and breast hygiene.

Utilization and Patient-Reported Outcomes of Direct-to-Consumer Telemedicine During the First 6 Weeks of the COVID-19 Pandemic in the Largest Pediatric Ambulatory Network in New York State.

Objective: We aimed to (1) describe telemedicine utilization and usability during the first 6 weeks of the pandemic and (2) determine if usability varied by individual- or visit-level characteristics. Methods: We conducted a retrospective cohort study of ambulatory pediatric telemedicine visits occurring between March 10, 2020, and April 18, 2020, across a large academic health system. We performed manual chart review to assess individual- and visit-level characteristics and invited caregivers to respond to an adapted Telehealth Usability Questionnaire (TUQ). We used multiple logistic regression to determine predictors of high usability. Results: There were 3,197 ambulatory pediatric telemedicine visits, representing 2,967 unique patients. Patients were racially/ethnically diverse (42.5% non-Hispanic White) and primarily English-speaking (89.2%). Surveys were completed by 441 (17%) of those invited. Every item of the TUQ had agreement or strong agreement from the majority of respondents. Compared with non-Hispanic White, non-Hispanic Asian identity was associated with lower usability in three domains and overall, and non-Hispanic Black identity was associated with higher satisfaction and future use. As compared with caregivers of infants younger than 1 year, caregivers of older patients reported lower usability in the three domains. Conclusions: Telemedicine was successfully implemented across 18 ambulatory pediatric specialties in the largest health system in New York State at the onset of COVID-19, and caregivers found it usable and acceptable. Usability scores did not vary by visit-level characteristics but did vary by race/ethnicity and age. Further research is necessary to identify modifiable drivers of the patient experience, particularly in non-Hispanic Asian communities and older adolescents.

Sociodemographic Disparities in Ambulatory Pediatric Telemedicine Utilization During COVID-19.

Objective: Few studies have examined sociodemographic disparities in ambulatory pediatric telemedicine utilization during the coronavirus disease 2019 pandemic. We aimed to (1) assess disparities in telemedicine visit completion during the first 6 weeks of the pandemic in 2020 and (2) determine if these disparities were significantly different from those present in 2019, when all visits occurred in person. Methods: We compared sociodemographic characteristics of patients with successful versus unsuccessful telemedicine visits from March 10, 2020 to April 18, 2020, using generalized linear mixed models. We performed the same analysis for in-person visits from the same period in 2019. We tested for differences across years using interaction terms in a combined 2019-2020 model. Results: Of 3,639 telemedicine visits scheduled, 3,033 (83.3%) were successful. In 2020, Black/African American race was significantly associated with lower odds of telemedicine visit success (odds ratio 0.65 [95% confidence interval 0.49-0.87]) compared with White race, after adjusting for age, gender, ethnicity, insurance type, visit timing, visit specialty, social vulnerability index, and internet access. In 2019, racial identity other than White was significantly associated with lower odds of in-person visit success than White, as was public insurance compared with private. In the full 2019-2020 model, in-person visits (2019) had lower odds of success than telemedicine visits (2020), and neither race, insurance type, nor any other sociodemographic characteristic had significant interactions with year. Conclusions: Racial disparities were evident in telemedicine utilization early in the pandemic; however, these disparities were not significantly different from those seen in 2019, when all visits were in person. Furthermore, telemedicine may improve access to care overall, despite having no significant impact on inequity. Efforts to eliminate racial disparities in ambulatory pediatric health care utilization are necessary across visit modalities.

Quality of Web-Based Sickle Cell Disease Resources for Health Care Transition: Website Content Analysis.

Background: Adolescents and young adults with sickle cell disease (SCD) transitioning from pediatric to adult health care face a high-risk period associated with increased use of acute health care services and mortality. Although 59% of American citizens report using the internet for health care information, the quality of web-based, patient-facing resources regarding transition in SCD care has not been evaluated. Objective: This study aimed to evaluate the quality and readability of web-based health information on SCD, especially as it pertains to the transition to adulthood for inidividuals with SCD. The study also compared the readability and content scores of websites identified in 2018 to those from 2021 to assess any change in quality over time. Methods: Keywords representing phrases adolescents may use while searching for information on the internet regarding transition in SCD care, including "hydroxyurea" and "SCD transition," were identified. A web-based search using the keywords was conducted in July 2021 using Google, Yahoo, and Bing. The top 20 links from each search were collected. Duplicate websites, academic journals, and websites not related to SCD health care transition were excluded. Websites were categorized based on the source: health department, hospital or private clinician, professional society, and other websites. Websites were assessed using Health On the Net Foundation code of conduct (HONcode), Flesch Reading Ease (FRE), Flesch-Kincaid Grade Level (FGL), Ensuring Quality Information for Patients (EQIP), and a novel SCD content checklist (SCDCC). EQIP and SCDCC scores range from 0- to 100. Each website was reviewed by 2 research assistants and assessed for interrater reliability. Descriptive statistics were calculated. Results: Of the 900 websites collected, 67 (7.4%) met the inclusion criteria: 13 health department, 7 hospital or private clinician, 33 professional society, and 14 other websites. A total of 15 (22%) out of 67 websites had HONcode certification. Websites with HONcode certification had higher FRE and EQIP scores and lower FGL scores than those without HONcode certification, reflecting greater readability. Websites without HONcode certification had higher SCDCC scores, reflecting greater clinical content. Only 7 (10%) websites met the National Institutes of Health recommendation of a seventh-grade or lower reading level. Based on EQIP scores, 6 (9%) websites were of high quality. The mean SCDCC score was 20.60 (SD 22.14) out of 100. The interrater reliability for EQIP and SCDCC ratings was good (intraclass correlation: 0.718 and 0.897, respectively). No source of website scored significantly higher mean EQIP, FRE, FGL, or SCDCC scores than the others (all P<.05). Conclusions: Although seeking health care information on the web is very common, the overall quality of information about transition in SCD care on the internet is poor. Changes to current web-based health care information regarding SCD care transitions would benefit transitioning youth by providing expectations, knowledge, skills, and tools to increase self-efficacy.

Caregiver support, burden, and long-term planning among caregivers of individuals with intellectual and developmental disabilities: A cross-sectional study.

BACKGROUND: Long-term care planning (LTCP) is critical for individuals with intellectual/developmental disabilities. Objectives of this study were to investigate progression through LTCP, and associations between social support and: (1) LTCP and (2) burden among family caregivers. METHODS: A cross-sectional survey was distributed to caregivers of individuals with intellectual/developmental disabilities in NY, OH, PA, and TX, exploring demographics, supports, burden, and LTCP behaviours. Bivariate and linear multiple regression analyses were used to investigate study objectives. RESULTS: Caregivers (n = 405) were predominantly parents, female, non-Hispanic, and in the 'learning to plan' stage of LTCP. Caregiver-identified social support was associated with further progression in LTCP (p = .020) and lower caregiver burden (p < .001). CONCLUSION: Social support was associated with further progression in LTCP, and associated with less burden, however fewer than 40% of caregivers reported having social support. Ongoing exploration of emotional/social needs of caregivers is necessary to better support these families.

Identifying key components of a web-based long term care planning intervention for family caregivers of individuals with intellectual/developmental disabilities.

BACKGROUND: Few family caregivers of individuals with intellectual or developmental disabilities develop long-term care (LTC) plans for their relative. Web-based interventions promoting LTC planning have potential for widespread adoption into clinical practice. METHODS: We conducted focus groups with 49 primary caregivers of individuals with intellectual or developmental disabilities in NY, PA, OH, DE, and TX to identify barriers and facilitators of LTC planning, review existing tools, and identify critical features for web-based LTC planning interventions. Participants also answered questions on demographic characteristics and functional status. RESULTS: NVivo qualitative analysis software was used to analyse focus groups using a grounded theory approach. Caregivers identified web tool accessibility and topics such as finances, housing, and government benefits as critical. Caregivers also described desired features for a LTC planning tool. CONCLUSIONS: This study identified desired characteristics of web-based LTC planning tools and ways in which existing web-based interventions might be adapted or enhanced.

Telehealth Utilization and Follow-Up Visits in Developmental-Behavioral Pediatrics During the COVID-19 Pandemic in 2020.

OBJECTIVE: The goal of this study was to understand the effect of transition to telehealth care on follow-up visit attendance in a developmental-behavioral pediatric (DBP) practice in 2020 versus in-person care in 2019. METHODS: This was a retrospective observational cohort study of follow-up visits occurring in a large DBP practice during a 6-week period in March/April of 2019 and 2020. The primary outcome was follow-up visit adherence, defined as completion of scheduled follow-up visit. The primary exposure was telehealth visit in 2020 versus in-person visit in 2019. Covariates included patient demographics and clinical characteristics. Data were analyzed using descriptive statistics and logistic regression. RESULTS: The cohort included 2142 visits for 1868 unique patients. The patient mean age was 9.2 ± 4.8 years, with 73.4% male, 56.5% non-Hispanic, 51.4% White, and 68.3% commercial insurance. There were 470 telehealth visits from March to April 2020 and 1672 in-person visits from March to April 2019. Compared with in-person visits, telehealth visits were more likely to be completed (75.3% vs 64.4%, p < 0.001). After adjusting for age, sex, race, ethnicity, insurance, and week of visit (weeks 1-3 vs 4-6), odds of having a complete follow-up visit were higher for telehealth visits than for in-person visits (odds ratio = 1.57; 95% confidence interval [1.23-2.00], p < 0.001). CONCLUSION: Follow-up visit attendance was higher for telehealth care in 2020 than in-person care in 2019. This association persisted after adjusting for insurance, age, race, and ethnicity, suggesting that telehealth is associated with increased follow-up visit attendance in DBP care. Further studies are needed to understand the impact of telehealth on DBP clinical outcomes in chronic disease management.

Caring for Children With Medical Complexity in the Early COVID-19 Pandemic in an Ambulatory Primary Care Setting.

BACKGROUND: Children with medical complexity (CMC) have multiple chronic conditions and require a high level of coordinated healthcare. The risk of COVID-19 among CMC is unclear. OBJECTIVES: We aim to identify and describe the prevalence and experience of COVID-19 among CMC and their caregivers during the initial weeks of the COVID-19 pandemic in the NY metropolitan area. METHODS: We performed a cross-sectional study of children enrolled in a structured clinical program for CMC at a large urban, academic general pediatrics practice in NY. RESULTS: In our patient population (n = 132), 16 patients had a known exposure with parents being the most common exposure in 37.5% (n = 6). Two patients were hospitalized for COVID-19 while the remainder of the confirmed or suspected COVID-19 cases were managed as an outpatient. CONCLUSIONS: Common sources of COVID-19 exposure were family members and home care providers. Almost all of our patients experienced interruption of medical care including missed therapies and visits.

Increasing Pediatric to Adult Healthcare Transition Services Through Clinical Decision Supports.

PURPOSE: Despite American Academy of Pediatrics recommendations that adolescents receive healthcare transition (HCT) services starting at age 12, few do. Electronic health record-based clinical decision support (CDS) tools are effective at promoting healthcare provider adherence to clinical guidelines. This study's purpose was to increase provider HCT services engagement through implementation of a transition-specific CDS and participation in a transition-focused Learning Collaborative (LC). DESIGN AND METHODS: Three pediatric primary care sites of an urban, academic medical center implemented a transition CDS tool for ≥14-year-olds. Previously, one site had a version for ≥16-year-olds. Two sites participated in a LC with Plan-Do-Study-Act cycles targeting HCT services engagement, measured by CDS use and practice-level guideline implementation. RESULTS: From July 2018 through June 2019, providers at LC-participating sites engaged in HCT services at 8.0% (n = 480) and 5.3% (n = 145) of eligible patient visits compared to the control's 3.1% (n = 69). Engagement was highest for ≥18-year-olds at the LC-participating sites, 26.0% (n = 263) and 12.0% (n = 80), compared to the control's 7.2% (n = 31). After expanding from ≥16 to ≥14-year-olds, engagement decreased by 9.5% at ≥16-year-old visits. LC-participating sites reported increased HCT guideline adherence. CONCLUSIONS: Implementation of a transition-specific CDS with LC participation increased provider HCT services engagement and practice-level guideline implementation. Expansion to younger adolescents contributed to decreased engagement for older patients. Future research should assess opportunities to improve uptake and patient outcomes of transition CDS engagement. PRACTICE IMPLICATIONS: Quality improvement activities and transition clinical decision supports can improve provider engagement in recommended transition services for adolescents and young adults.

The Crisis Close at Hand: How COVID-19 Challenges Long-Term Care Planning for Adults with Intellectual Disability.

Whether cared for in the community or in a facility, adults with intellectual disability are among the most vulnerable individuals in the United States. Families caring for these individuals face financial, social, and emotional stress as they navigate long-term care choices for their loved ones. COVID-19 has stressed an already overwhelmed and disparate system.

Developing a Hospital-Wide Transition Program for Young Adults With Medical Complexity.

PURPOSE: Transitional age adults (18-24 years) are the fastest growing cohort of patients in children's hospitals across the nation. The purpose of the study was to standardize pediatric to adult healthcare transfers of complex adult patients through a tiered and multimodal population-based intervention. METHODS: The Multidisciplinary Intervention Navigation Team (MINT) was developed to decrease variations in pediatric to adult medical transitions. System-level goals were to (1) increase provider and leadership engagement, (2) increase transition tools, (3) increase use of electronic medical record-based clinical decision supports, (4) improve transition practices through development of transition policies and clinical pathways; (5) increase transition education for patients and caregivers; (6) increase the adult provider referral network; and (7) implement an adult transition consult service for complex patients (MINT Consult). RESULTS: Between July 2015 and March 2017, MINT identified 11 transition champions, increased the number of divisions with drafted transition policies from 0 to 7, increased utilization of electronic medical record-based transition support tools from 0 to 7 divisions, held seven psychoeducational events, and developed a clinical pathway. MINT has received more than 70 patient referrals. Of patients referred, median age is 21 years (range, 17-43); 70% (n = 42) have an intellectual disability. Referring pediatric providers (n = 25) reported that MINT helped identify adult providers and coordinate care with other Children's Hospital of Philadelphia specialists (78%); and that MINT saved greater than 2 hours of time (48%). CONCLUSIONS: MINT improved the availability, knowledge, and use of transition-related resources; saved significant time among care team members; and increased provider comfort around transition-related conversations.

Domains of planning for future long-term care of adults with intellectual and developmental disabilities: Parent and sibling perspectives.

BACKGROUND: Research shows that adults with intellectual and developmental disabilities (IDD) increasingly outlive caregivers, who often struggle to plan for the future and have little support and knowledge surrounding long-term care planning. METHODS: The study team conducted interviews with parents and siblings of adults with IDD and performed qualitative coding using a modified grounded theory to explore domains of future planning and identify barriers and facilitators. RESULTS: Themes from the interviews revealed seven major domains of future planning that should be considered by caregivers of adults with IDD. These domains are housing, legal planning, identification of primary caregiver(s), financial planning, day-to-day care, medical management and transportation. Approaches to planning within each domain varied greatly. CONCLUSIONS: The study team dentified the domain of "identification of primary caregiver(s)" as potentially the most important step for caregivers when planning for the future, but also observed that the domains identified are significantly interrelated and should be considered together.

The genesis of systems of care for transition to adulthood services: emerging models in primary and subspecialty care.

PURPOSE OF REVIEW: Transitioning adolescents and young adults with chronic conditions can be complex. Expert recommendations support a transition process that starts in early adolescence, provides continuous guidance and support and allows for care opportunities with patients and caregivers, with the patient alone and between paediatric and adult providers. As most of the guidance is focused on individual patients, providers and clinical programmes, much less is known about how health systems as a whole might support effective transitions of care. RECENT FINDINGS: Many intervention studies focus on the preparation necessary to successfully transition adolescents, young adults and their families to adult care. Although randomized controlled trials of transition interventions are few and standards of care not yet established, promising models are being developed and tested. This review will describe the development and implementation of emerging models of transitional care in primary and subspecialty care, paying special attention to evaluation outcomes that can inform model selection. SUMMARY: The emerging models described here highlight the importance of and guidance for invested clinicians and health systems to create effective methods for successful transition. Additional research using rigorous methodology is necessary.

Reducing Pain During Intrauterine Device Insertion: A Randomized Controlled Trial in Adolescents and Young Women.

OBJECTIVE: To estimate the effect of a 1% lidocaine paracervical nerve block on pain during intrauterine device (IUD) insertion compared with a sham block in adolescents and young women. METHODS: We conducted a multisite, single-blind, sham-controlled randomized trial in adolescents and young women having a 13.5-mg levonorgestrel IUD inserted. Enrollment occurred at three family planning clinics in Philadelphia, Pennsylvania. Eligible adolescents and young women were aged 14-22 years, nulliparous, not currently or recently pregnant, and English-speaking. Participants were randomized using computer-generated allocation in block sizes of four to receive a 10-mL 1% lidocaine paracervical block or a sham block (1 cm depression of the vaginal epithelium at paracervical block sites with a wooden cotton-tipped applicator). Only patients were blinded. The primary outcome was pain after IUD insertion measured with a 100-mm visual analog scale. Using a two-sided t test and assuming a 20-mm difference in visual analog scale scores, a SD of 28 mm, an α of 0.05, and 90% power, a sample of 43 participants per group was estimated. RESULTS: Between March 2015 and July 2016, 95 participants enrolled (47 lidocaine block group; 48 sham block group). All were included in the analysis. Forty-four percent were white, 36% black, 65% privately insured, and 79% previously used contraception. The median visual analog scale score after IUD insertion was 30.0 (95% CI 20.0-58.0) in the lidocaine block group and 71.5 (95% CI 66.0-82.0) in the sham block (P<.001). CONCLUSION: A 10-mL 1% lidocaine paracervical nerve block reduces pain during IUD insertion in adolescents and young women compared with a sham block with pressure on the vaginal epithelium. CLINICAL TRIAL REGISTRATION: ClinicalTrials.gov, NCT02352714.

Youth Homelessness: Prevalence and Associations with Weight in Three Regions.

This study investigated the utility of the Youth Risk Behavior Survey (YRBS) to document associations between homeless status and weight while estimating the prevalence of youth homelessness in three regions. A school-based survey, the YRBS includes youths who have been difficult to involve in past research. Analysis of 2011 YRBS data produced population-weighted estimates of youth homelessness prevalence separately for Connecticut, Delaware, and Philadelphia. Public high school students anonymously reported their housing status, height, and weight on the YRBS. Height and weight were converted to body mass index (BMI) percentile-for-age scores. Homelessness was associated with higher BMI percentile scores for youths compared with nonhomeless peers. Associations between BMI percentile and different forms of homelessness (homeless with family, unaccompanied homeless without family) were explored at each site. Estimates of one-month homelessness prevalence ranged from 3.9 percent to 5.9 percent at each site. Homelessness, especially family homelessness, is associated with risk for higher BMI. The YRBS is an informative tool for estimating the prevalence of youth homelessness, expanding on what is known through other, more commonly used methods.