Confidentiality in the Care of Adolescents: Technical Report.

Confidentiality is a foundational element of high-quality, accessible, and equitable health care. Despite strong grounding in federal and state laws, professional guidelines, and ethical standards, health care professionals and adolescent patients face a range of complexities and barriers to seeking and providing confidential care to adolescents across different settings and circumstances. The dynamic needs of adolescents, the oftentimes competing interests of key stakeholders, the rapidly evolving technological context of care, and variable health care billing and claims requirements are all important considerations in understanding how to optimize care to focus on and meet the needs of the adolescent patient. The following assessment of the evolving evidence base offers a view of the current state and best practices while pointing to numerous unmet needs and opportunities for improvement in the care experiences of youth as well as their health outcomes.

Confidentiality in the Care of Adolescents: Policy Statement.

Confidentiality is an essential component of high-quality health care for adolescents and young adults and can have an impact on the health care experiences and health outcomes of youth. Federal and state laws, professional guidelines, and ethical standards provide a core framework for guidance in the implementation of confidentiality protections in clinical practice. This policy statement provides recommendations for pediatricians and other pediatric health care professionals, clinics, health systems, payers, and electronic health record developers to optimize confidentiality practices and protections for adolescents and young adults across the spectrum of care.

Surgical outcome of a patient with Bertolotti's syndrome in whom the established Castellvi classification system failed: illustrative case.

BACKGROUND: Bertolotti's syndrome is a condition of the lower back and/or L5 distribution leg pain caused by a lumbosacral transitional vertebra (LSTV). Diagnosing the LSTV as the cause of the symptoms and condition is essential for accurate management of this syndrome. Castellvi's classification system is widely accepted for LSTV anatomy, but it measures only one aspect of transitional anatomy and was intended primarily to identify target-level disk herniations. OBSERVATIONS: In this case, the Castellvi classification system failed to identify the patient (with 2 years of back and L5 pain) as having an LSTV, even though he displayed LSTV-like anatomy because both L5 transverse process heights measured less than 19 mm. He attained brief but significant relief from bilateral injections into the L5-S1 transverse/ala region and underwent a minimally invasive bilateral decompression of L5-S1 with almost complete relief of his symptoms maintained more than 6 months postoperatively. LESSONS: Given that the patient gained significant relief from treatment of transitional anatomy that failed to be identified using Castellvi's classification system, this case suggests that transverse process height may not be adequate or even the most clinically relevant indicator in identifying LSTV anatomy, which is a precursor to the diagnosis of Bertolotti's syndrome.

Analysis of North Carolina Medicaid Claims Data to Simulate a Pediatric Accountable Care Organization.

Importance: Despite momentum for pediatric value-based payment models, little is known about tailoring design elements to account for the unique needs and utilization patterns of children and young adults. Objective: To simulate attribution to a hypothetical pediatric accountable care organization (ACO) and describe baseline demographic characteristics, expenditures, and utilization patterns over the subsequent year. Design, Setting, and Participants: This retrospective cohort study used Medicaid claims data for children and young adults aged 1 to 20 years enrolled in North Carolina Medicaid at any time during 2017. Children and young adults receiving at least 50% of their primary care at a large academic medical center (AMC) in 2017 were attributed to the ACO. Data were analyzed from April 2020 to March 2021. Main Outcomes and Measures: Primary outcomes were total cost of care and care utilization during the 2018 performance year. Results: Among 930 266 children and young adults (377 233 children [40.6%] aged 6-12 years; 470 612 [50.6%] female) enrolled in Medicare in North Carolina in 2017, 27 290 children and young adults were attributed to the ACO. A total of 12 306 Black non-Hispanic children and young adults (45.1%), 6308 Hispanic or Latinx children and young adults (23.1%), and 6531 White non-Hispanic children and young adults (23.9%) were included. Most attributed individuals (23 133 individuals [84.7%]) had at least 1 claim in the performance year. The median (IQR) total cost of care in 2018 was $347 ($107-$1123); 272 individuals (1.0%) accounted for nearly half of total costs. Compared with children and young adults in the lowest-cost quartile, those in the highest-cost quartile were more likely to have complex medical conditions (399 individuals [6.9%] vs 3442 individuals [59.5%]) and to live farther from the AMC (median [IQR distance, 6.0 [4.6-20.3] miles vs 13.9 [4.6-30.9] miles). Total cost of care was accrued in home (43%), outpatient specialty (19%), inpatient (14%) and primary (8%) care. More than half of attributed children and young adults received care outside of the ACO; the median (IQR) cost for leaked care was $349 ($130-$1326). The costliest leaked encounters included inpatient, ancillary, and home health care, while the most frequently leaked encounters included behavioral health, emergency, and primary care. Conclusions and Relevance: This cohort study found that while most children attributed to the hypothetical Medicaid pediatric ACO lived locally with few health care encounters, a small group of children with medical complexity traveled long distances for care and used frequent and costly home-based and outpatient specialty care. Leaked care was substantial for all attributed children, with the cost of leaked care being higher than the total cost of care. These pediatric-specific clinical and utilization profiles have implications for future pediatric ACO design choices related to attribution, accounting for children with high costs, and strategies to address leaked care.

Predictive Modeling to Identify Children With Complex Health Needs At Risk for Hospitalization.

BACKGROUND: Identifying children at high risk with complex health needs (CCHN) who have intersecting medical and social needs is challenging. This study's objectives were to (1) develop and evaluate an electronic health record (EHR)-based clinical predictive model ("model") for identifying high-risk CCHN and (2) compare the model's performance as a clinical decision support (CDS) to other CDS tools available for identifying high-risk CCHN. METHODS: This retrospective cohort study included children aged 0 to 20 years with established care within a single health system. The model development/validation cohort included 33 months (January 1, 2016-September 30, 2018) and the testing cohort included 18 months (October 1, 2018-March 31, 2020) of EHR data. Machine learning methods generated a model that predicted probability (0%-100%) for hospitalization within 6 months. Model performance measures included sensitivity, positive predictive value, area under receiver-operator curve, and area under precision-recall curve. Three CDS rules for identifying high-risk CCHN were compared: (1) hospitalization probability ≥10% (model-predicted); (2) complex chronic disease classification (using Pediatric Medical Complexity Algorithm [PMCA]); and (3) previous high hospital utilization. RESULTS: Model development and testing cohorts included 116 799 and 27 087 patients, respectively. The model demonstrated area under receiver-operator curve = 0.79 and area under precision-recall curve = 0.13. PMCA had the highest sensitivity (52.4%) and classified the most children as high risk (17.3%). Positive predictive value of the model-based CDS rule (19%) was higher than CDS based on the PMCA (1.9%) and previous hospital utilization (15%). CONCLUSIONS: A novel EHR-based predictive model was developed and validated as a population-level CDS tool for identifying CCHN at high risk for future hospitalization.

Redefining the Classification for Bertolotti Syndrome: Anatomical Findings in Lumbosacral Transitional Vertebrae Guide Treatment Selection.

OBJECTIVE: We present the Jenkins classification for Bertolotti syndrome or symptomatic lumbosacral transitional vertebra (LSTV) and compare this with the existing Castellvi classification for patients presenting for treatment. METHODS: We performed a retrospective cohort study of 150 new patients presenting for treatment of back, hip, groin, and/or leg pain from July 2012 through February 2022. Using magnetic resonance imaging, computed tomography, and radiography, the patients with a radiographic finding of LSTV, an appropriate clinical presentation, and identification of LSTV as the primary pain generator via diagnostic injections were diagnosed with Bertolotti syndrome. Patients for whom conservative treatment had failed and who underwent surgery to address their LSTV were included in the present study. RESULTS: The Castellvi classification excludes 2 types of anatomic variants: the prominent anatomic side and the potential transverse process and iliac crest contact. Of 150 patients with transitional anatomy, 103 (69%) were identified with Bertolotti syndrome using the Jenkins classification and received surgery (46 men [45%] and 57 women [55%]). Of the 103 patients, 90 (87%) underwent minimally invasive surgery. The patients presented with pain localized to the back (n = 101; 98%), leg (n = 79; 77%), hip (n = 51; 49%), and buttock (n = 52; 50%). Only 84 of the Jenkins classification patients (82%) met any of the Castellvi criteria. All 19 patients for whom the Castellvi classification failed had had type 1 anatomy using the Jenkins system and underwent surgery (decompression, n = 16 [84%]; fusion, n = 1 [5%]; fusion plus decompression, n = 2 [11%]). Of these 19 patients, 17 (89%) had improved pain scores. The 19 patients exclusively diagnosed via the Jenkins classification had no significant differences in improved pain compared with those diagnosed using the Castellvi classification. CONCLUSIONS: The Jenkins classification improves on the prior Castellvi classification to more comprehensively describe the functional anatomy, identify uncaptured anatomy, and better predict optimal surgical procedures to treat those with Bertolotti syndrome.

Redefining the Treatment of Lumbosacral Transitional Vertebrae for Bertolotti Syndrome: Long-Term Outcomes Utilizing the Jenkins Classification to Determine Treatment.

OBJECTIVE: Using the Jenkins classification, we propose a strategy of shaving down hypertrophic bone, unilateral fusion, or bilateral fusion procedures to achieve pain reduction and improve quality of life for patients with Bertolotti syndrome. METHODS: We reviewed 103 patients from 2012 through 2021 who had surgically treated Bertolotti syndrome. We identified 56 patients with Bertolotti syndrome and at least 6 months of follow-up. Patients with iliac contact preoperatively were presumed to be more likely to have hip pain that could respond to surgical treatment, and those patients were tracked for those outcomes as well. RESULTS: Type 1 patients (n = 13) underwent resection. Eleven (85%) had improvement, 7 (54%) had good outcome, 1 (7%) had subsequent surgery, 1 (7%) was suggested additional surgery, and 2 (14%) were lost to follow-up. In Type 2 patients (n = 36), 18 underwent decompressions and 18 underwent fusions as a first line. Of the 18 patients treated with resection an interim analysis saw 10 (55%) with failure and needing subsequent procedures. With subsequent procedure, 14 (78%) saw improvement. For fusion surgical patients, 16 (88%) saw some improvement and 13 (72%) had a good outcome. In Type 4 patients (n = 7), 6 (86%) did well with unilateral fusion, with durable benefit at 2 years. In patients who had hip pain preoperatively (n = 27), 21 (78%) had improvement of hip pain postoperatively. CONCLUSIONS: The Jenkins classification system provides a strategy for patients with Bertolotti syndrome who fail conservative therapy. Patients with Type 1 anatomy respond well to resection procedures. Patients with Type 2 and Type 4 anatomy respond well to fusion procedures. These patients respond well in regard to hip pain.

Adolescent and Young Adult Perspectives on Quality and Value in Health Care.

OBJECTIVE: To describe adolescent and young adult (AYA) perspectives on defining quality and value in health care and to gain understanding of their knowledge of value-based payment. METHODS: A text message-based survey was sent to a convenience sample of AYAs aged 14 to 24 in 2019. Participants were asked 4 open-ended questions: 1) how they would define "good health care," 2) what factors to consider in rating doctors, 3) whose opinions should matter most when rating doctors, and 4) the best ways to collect AYA opinions on doctors, and one yes/no question on their awareness of value-based payment. Analyses included descriptive demographic statistics and an inductive thematic approach with multivariable models comparing adolescent (14-18) and young adult (19-24) responses. RESULTS: Response rate was 61.0% (782/1283). Most participants were White (63.3%), female (53.3%), and adolescents (55.6%). Common themes from the first 2 questions included accessibility (specifically affordability), coverage benefits, and care experience (including compassion, respect, and clinical competence). Young adults more commonly mentioned affordability than adolescents (54.4% vs 43.3%, P = .001) and more commonly felt their opinion should matter more than their parents when rating doctors (80.6% vs 62.0%, P < .001). Only 21.0% of AYAs were familiar with the potential value-based link between physician payment and care quality. CONCLUSIONS: When considering quality and value in health care, AYAs expressed their desired agency in rating the quality of their care and clinicians. AYAs' perspectives on health care quality, including the importance of care accessibility and affordability, should be considered when designing youth-centered care delivery and value-based payment models.

Caring for adolescents and young adults with attention-deficit/hyperactivity disorder in primary care: seizing opportunities to address youth mental health needs.

PURPOSE OF REVIEW: To provide primary care providers (PCPs) with updated practical guidance around the assessment and management of attention-deficit/hyperactivity disorder (ADHD) in adolescents and young adults (AYA). RECENT FINDINGS: Of the three different presentations of ADHD delineated in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), the Predominantly Inattentive presentation is the most common among AYA. Multiple rating scales exist to assist clinicians in identifying ADHD symptoms and monitoring treatment effects. Importantly, ADHD frequently persists into adulthood with negative impacts in many life domains if left untreated. It is important for PCPs to provide support for AYA as they transition to adulthood, as treatment adherence often drops sharply at that time, and, once treatment is discontinued, it is rarely restarted. Further, clinicians should be aware of the negative psychological, behavioral, and social impacts that COVID-19 has had on AYA with ADHD. SUMMARY: AYA with ADHD often seek care first from PCPs. However, diagnosis and management of ADHD among AYA are challenging, and many clinicians feel ill-equipped, creating concern that many youth may go undiagnosed and untreated. Despite these long-standing challenges, recent advances have opened up critical opportunities for PCPs to proactively address ADHD in primary care settings and make a profound impact on youth as they seek to realize their full potential.

Social determinants of human papillomavirus vaccine series completion among U.S. adolescents: A mixed-methods study.

Introduction: Human papillomavirus (HPV) vaccination can significantly reduce HPV-associated cancers. In the US, two doses are recommended for vaccine completion for younger adolescents. However, series completion rates remain below the nation's goal of 80% coverage. Multi-faceted factors may influence adolescent series completion. The purpose of this study was to identify individual-level, relationship-level, and community-level factors of timely series completion among adolescents, ages 11-14, initiating the HPV vaccine series in 2017. Methods: A convergent, mixed-methods design was used combining adolescent electronic health record data (n = 803) and qualitative interviews with adolescents and their parents (n = 32) to assess timely series completion within 14-months (e.g., January 2018 to February 2019). Multivariable logistic regression analysis examined individual-level and community-level factors influencing timely series completion. Directed content analysis was used to identify relevant themes and subthemes. We provided an integrative summary to assess patterns of convergence or divergence between quantitative and qualitative data. Results: In the quantitative phase, 61.0% of adolescents completed the vaccine series and 47.3% completed it on-time. Higher odds of timely series completion were among younger adolescents at vaccine initiation (aOR = 1.82, 95%CI = 1.07, 3.11) and lower among adolescents who were Black (aOR = 0.57, 95%CI = 0.37, 0.89) and Hispanic (aOR = 0.54, 95%CI = 0.30, 0.95) compared to Non-Hispanic White adolescents and those without private insurance (aOR = 0.56, 95%CI = 0.37, 0.85). Qualitative findings revealed increased risk for HPV at sexual debut as a motivator for timely series completion. Family/peers and healthcare providers influenced timely series completion among minority adolescents. Community-level factors were not significantly associated with timely series completion, however, qualitative findings revealed lack of transportation as a barrier to timely series completion. Conclusion: Multi-level factors continue to influence timely series completion, despite fewer doses needed for series completion. Innovative strategies are needed to improve care coordination for receiving vaccine doses, patient-provider communication about series completion and increase access to HPV vaccine.

Parent-to-parent peer support for children and youth with special health care needs: Preliminary evaluation of a family partner program in a healthcare system.

PURPOSE: Children and youth with special health care needs (CYSHCN) have complex care and coordination needs that are often managed by parents or primary caregivers. This study describes a parent-to-parent peer support pilot program for parents of CYSHCN implemented in both outpatient and inpatient settings across a large health system. DESIGN & METHODS: Retrospective data from the Family Partner Program documentation in patient health records are described. Descriptions about the encounters and types of support provided are also reviewed using qualitative descriptive analysis. RESULTS: Three Family Partners conducted 203 encounters with parents of 90 CYSHCN over six months. Family Partners provided both emotional and tangible support. Primary themes discussed included the persistent care, coordination and management needs related to parenting a child with complex care needs, the subsequent worry and stress about their child and family, and the need for stress management and self-care. CONCLUSION: This study provides early evidence that implementation of a parent-to-parent peer support program for parents of CYSHCN in a large, academic medical center is feasible. Family Partners enhanced their healthcare team's ability to provide patient- and family-centered support for pediatric patients and their families through the provision of emotional and tangible support. PRACTICE IMPLICATIONS: Family Partners, who are trained in effective use of the shared experience, the health coach model, and healthcare systems, and who are supported by a strong supervisory team, are ideally suited to support families and patients as they address their concerns and unmet needs and navigate complex health circumstances.

Neuronal genetic rescue normalizes brain network dynamics in a lysosomal storage disorder despite persistent storage accumulation.

Although neurologic symptoms occur in two-thirds of lysosomal storage disorders (LSDs), for most we do not understand the mechanisms underlying brain dysfunction. A major unanswered question is if the pathogenic hallmark of LSDs, storage accumulation, induces functional defects directly or is a disease bystander. Also, for most LSDs we do not know the impact of loss of function in individual cell types. Understanding these critical questions are essential to therapy development. Here, we determine the impact of genetic rescue in distinct cell types on neural circuit dysfunction in CLN3 disease, the most common pediatric dementia and a paradigmatic neurodegenerative LSD. We restored Cln3 expression via AAV-mediated gene delivery and conditional genetic rescue in a CLN3 disease mouse model. Surprisingly, we found that low-level rescue of Cln3 expression in neurons alone normalized clinically relevant electrophysiologic markers of network dysfunction, despite the presence of substantial residual histopathology, in contrast to restoring expression in astrocytes. Thus, loss of CLN3 function in neurons, not storage accumulation, underlies neurologic dysfunction in CLN3 disease. This impliesies that storage clearance may be an inappropriate target for therapy development and an ineffectual biomarker.

Regularity and Timing of Sleep Patterns and Behavioral Health Among Adolescents.

OBJECTIVE: Sleep is vital to supporting adolescent behavioral health and functioning; however, sleep disturbances remain under-recognized and undertreated in many health care settings. One barrier is the complexity of sleep, which makes it difficult for providers to determine which aspects-beyond sleep duration-may be most important to assess and treat to support adolescent health. This study examined associations between 2 sleep indices (regularity and timing) and adolescent behavioral health and functioning over and above the impact of shortened/fragmented sleep. METHOD: Eighty-nine adolescents recruited from the community (mean age = 14.04, 45% female participants) completed 7 days/nights of actigraphy and, along with a parent/guardian, reported on behavioral health (internalizing and externalizing symptoms) and psychosocial functioning. Stepwise linear regressions examined associations between sleep timing and regularity and behavioral/functional outcomes after accounting for shortened/fragmented sleep. RESULTS: Delayed sleep timing was associated with greater self-reported internalizing (F[6,82] = 11.57, p = 0.001) and externalizing (F[6,82] = 11.12, p = 0.001) symptoms after accounting for shortened/fragmented sleep. Irregular sleep was associated with greater self-reported and parent-reported externalizing symptoms (self: F[7,81] = 6.55, p = 0.01; parent: F[7,80] = 6.20, p = 0.01) and lower psychosocial functioning (self: F[7,81] = 6.03, p = 0.02; parent: F[7,78] = 3.99, p < 0.05) after accounting for both shortened/fragmented sleep and delayed sleep timing. CONCLUSION: Sleep regularity and timing may be critical for understanding the risk of poor behavioral health and functional deficits among adolescents and as prevention and intervention targets. Future work should focus on developing and evaluating convenient, low-cost, and effective methods for addressing delayed and/or irregular adolescent sleep patterns in real-world health care settings.

Racial Residential Segregation and Race Differences in Ideal Cardiovascular Health among Young Men.

BACKGROUND: Race disparities in cardiovascular disease (CVD) related morbidity and mortality are evident among men. While previous studies show health in young adulthood and racial residential segregation (RRS) are important factors for CVD risk, these factors have not been widely studied in male populations. We sought to examine race differences in ideal cardiovascular health (CVH) among young men (ages 24-34) and whether RRS influenced this association. METHODS: We used cross-sectional data from young men who participated in Wave IV (2008) of the National Longitudinal Survey of Adolescent to Adult Health (N = 5080). The dichotomous outcome, achieving ideal CVH, was defined as having ≥4 of the American Heart Association's Life's Simple 7 targets. Race (Black/White) and RRS (proportion of White residents in census tract) were the independent variables. Descriptive and multivariate analyses were conducted. RESULTS: Young Black men had lower odds of achieving ideal CVH (OR = 0.67, 95% CI = 0.49, 0.92) than young White men. However, RRS did not have a significant effect on race differences in ideal CVH until the proportion of White residents was ≥55%. CONCLUSIONS: Among young Black and White men, RRS is an important factor to consider when seeking to understand CVH and reduce future cardiovascular risk.

Factors Associated With Human Papillomavirus Vaccine Series Completion Among Adolescents.

INTRODUCTION: Most cancers associated with the human papillomavirus are preventable through vaccination. However, adolescent series completion rates are at 75.8%. Two vaccine doses are recommended for adolescents, but factors influencing 2-dose series completion are not well explored. The purpose of this study is to examine individual-level and community-level factors associated with timely human papillomavirus vaccine series completion among adolescents in the Southeastern U.S. METHODS: Series completion was assessed from January 2018 to February 2019 among a cohort of adolescents initiating vaccination in 2017. Factors influencing overall series completion and timely series completion were assessed using multivariable logistic regression. RESULTS: Among the sample, 64.4% completed the vaccine series and 53.8% completed it timely (e.g., 14 months). Higher odds of series completion were among adolescents who were younger at vaccine initiation (AOR=1.94, 95% CI=1.50, 2.50), who traveled moderate distances to the clinic (AOR=1.62, 95% CI=1.03, 2.56), and who lived in low-deprivation neighborhoods (AOR=1.85, 95% CI=1.31, 2.60), and lower among Hispanic (AOR=0.62, 95% CI=0.45, 0.87) and non-Hispanic Black (AOR=0.66, 95% CI=0.54, 0.81) adolescents and among those without private insurance (AOR=0.68, 95% CI=0.56, 0.83). Timely series completion resulted in similar findings; however, lower odds were among Hispanic (AOR=0.63, 95% CI=0.43, 0.95) and non-Hispanic Black (AOR=0.68, 95% CI=0.50, 0.92) adolescents than among non-Hispanic other adolescents. CONCLUSIONS: Individual-level and community-level factors continue to influence adolescent series completion, despite a reduction in doses. Future research is needed to understand racial/ethnic and regional disparities in human papillomavirus vaccine series completion and to develop interventions to promote series completion.

COVID-19 Response Strategies at Large Institutes of Higher Education in the United States: A Landscape Analysis, Fall 2020.

PURPOSE: To examine the pandemic response plans of institutes of higher education (i.e., colleges and universities), including COVID-19 prevention, enforcement, and testing strategies. METHOD: Data from the largest public (n = 50) and private (n = 50) US institutes of higher education were collected from October 30 to November 20, 2020. RESULTS: Most institutes of higher education (n = 93) offered some in-person teaching in the Fall 2020 semester; most adopted masking (100%) and physical distancing (99%) mandates. Other preventive strategies included on-campus housing de-densification (58%), classroom de-densification (61%), mandated COVID-19-related training (39%), and behavioral compacts (43%). Testing strategies included entry testing (65%), testing at regular intervals (32%), population sample testing (46%), and exit testing (15%). More private than public institutes implemented intercollegiate athletics bans, behavioral compacts, and suspension clauses for noncompliance. CONCLUSIONS: Variability in COVID-19 prevention and testing strategies highlights the need for national recommendations and the equitable distribution of sufficient pandemic response resources to institutes of higher education.