Search

This is a prepublication version of an article that has undergone peer review and been accepted for publication but is not the final version of record. This paper may be cited using the DOI and date of access. This paper may contain information that has errors in facts, figures, and statements, and will be corrected in the final published version. The journal is providing an early version of this article to expedite access to this information. The American Academy of Pediatrics, the editors, and authors are not responsible for inaccurate information and data described in this version. [ABSTRACT FROM AUTHOR]

Pediatric hematology-oncology (PHO) is 1 of the oldest recognized pediatric subspecialities. PHO physicians care for infants, children, adolescents, and young adults with all types of cancer and nonmalignant blood conditions, in many cases temporarily assuming the role of a primary care physician because of the complexity and intensity of treatment. However, the number of clinically active PHO subspecialists needed to care for children in the United States remains unknown. Recent papers suggest a potential oversaturation of PHO physicians in some geographic areas. This article is part of a Pediatrics supplement focused on projecting the future supply of the pediatric subspecialty workforce. It draws on information available in the literature, data from the American Board of Pediatrics, and findings from a new microsimulation model estimating the future supply of pediatric subspecialists through 2040. The model predicts a workforce growth in PHO subspecialists of 66% by 2040. Alternative scenarios, including changes in clinical time and fellowship size, resulted in a difference in growth of ±18% from baseline. The model also forecasts significant geographic maldistribution. For example, the current workforce is concentrated in the Northeast Census region and the model predicts the New England Census division will have a 2.9-fold higher clinical workforce equivalent per 100 000 children aged 0 to 18 years than the Mountain Census division by 2040. These findings suggest potential opportunities to improve the PHO subspecialty workforce and the outcomes and experiences of its patient population through educational changes, practice initiatives, policy interventions, and dedicated research. [ABSTRACT FROM AUTHOR]

In response to a number of emerging issues, in 2017 the federal Maternal and Child Health Bureau funded its first collaborative quality improvement network aimed at improving the quality of life for children with medical complexity, the well-being of their families and the cost-effectiveness of their care. This paper is intended as a brief introduction to the Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity or CMC CoIIN project. In it, you will learn about the origins of the project, the guiding principles used to cocreate and promote measurable, meaningful family engagement in systems-level change efforts, its goals and objectives, the impact of the coronavirus disease 2019 pandemic on the project and some high-level learnings from our experiences, which have implications for future care delivery improvements for this growing and vulnerable population of children. [ABSTRACT FROM AUTHOR]

The Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity (CMC CoIIN) was designed with a foundational commitment to partnership with family leaders to codesign and improve systems of care and supports for CMC and their families -- this fundamental commitment was essential to the CMC CoIIN's measurement strategy. In this paper, we examine key learnings from partnering with family leaders from interdisciplinary state teams in the CMC CoIIN to identify and define quantitative quality improvement measures to improve care and support for CMC and their families, including quality of life, well-being, and flourishing; unmet health needs; and support systems such as medical home, patient and family engagement, and shared plans of care. Codesigning the CMC CoIIN measurement strategy with family leaders greatly enhanced our measurement approach and provided numerous unique learning opportunities for the CMC CoIIN's project team and state teams. [ABSTRACT FROM AUTHOR]

BACKGROUND AND OBJECTIVES: Parental depression affects as many as 1 in 5 US families. Pediatric professionals can play an important role in detecting parental depression, yet most studies on parental depression screening focus only on the postpartum period. The authors performed this scoping review to understand the existing literature on parental depression screening outside the postpartum period (child >12 months old) and to identify knowledge gaps. METHODS: Sources for this research include PubMed, CINAHL, SCOPUS, Web of Science, and APA Psych Info. We included English language papers concerning screening for maternal and/or paternal depression or mood disorders outside of the postpartum period by pediatric clinicians or in a pediatric health care setting. Extracted variables included publication year, title, author(s), country, geographic setting, clinical setting, child age range (in years), parental focus, sample size, study type, approach, screening instrument(s), and findings. RESULTS: Forty-one papers were included. The proportion of positive parental depression screens was consistently high across the included studies. Relatively few structured screening programs outside of the postpartum period were identified, especially for fathers. The included studies suggest that screening can be accomplished in pediatric settings, but appropriate referral and follow-up of positive screens poses a major challenge. This review was limited to English language papers concerning parental depression outside of the postpartum period. CONCLUSIONS: These findings suggest that screening for parental depressive symptoms outside the postpartum period could identify families in need of support. Research is required to identify best practices for referral and follow-up of parents who screen positive. [ABSTRACT FROM AUTHOR]

Children with inherited and/or acquired respiratory disorders often arrive in adolescence and adulthood with diminished lung function that might have been detected and prevented had better mechanisms been available to identify and to assess progression of disease. Fortunately, advances in genetic assessments, low-cost diagnostics, and minimally- invasive novel biomarkers are being developed to detect and to treat respiratory diseases before they give rise to loss of life or lung function. This paper summarizes the Developing Biomarkers for Pulmonary Health sessions of the National Heart, Lung, and Blood Institute- sponsored 2021 Defining and Promoting Pediatric Pulmonary Health workshop. These sessions discussed genetic testing, pulse oximetry, exhaled nitric oxide, and novel biomarkers related to childhood lung diseases. [ABSTRACT FROM AUTHOR]

Healthy sleep and optimal ventilatory control begin in early development and are crucial for positive child outcomes. This paper summarizes information presented at the Sleep and Ventilatory Control sessions of the National Heart, Lung, and Blood-sponsored 2021 Defining and Promoting Pediatric Pulmonary Health workshop. These sessions focused on pediatric sleep health, screening for sleep health and sleep disorders in primary care using the electronic health record, infant sleep and ventilatory control, and home sleep testing. Throughout this summary, we discuss key gaps in and barriers to promoting sleep and ventilatory health that were identified during the workshop sessions. We conclude with strategies to address these gaps and barriers and directions for future multidisciplinary research, patient care, and training. [ABSTRACT FROM AUTHOR]

OBJECTIVES: Delayed child skill development is a common phenomenon in low- and middle-income countries. Effective and low-cost strategies suitable for application to less-developed countries are needed. We summarize empirical findings from recent papers that study a replication of the Jamaica Reach Up and Learn home visiting program in China, China REACH, and compare child skill growth profiles in the China Reach Up and Jamaica interventions. METHODS: Different interventions often use different measures for assessing early childhood skill development. To estimate the growth of underlying skills across programs, we address the challenge that different programs use different assessments. We use a modified version of the Rasch model to anchor scores on common items to estimate skill development. RESULTS: Language skill growth curves are comparable for both interventions. This pattern is consistent for the treatment and control groups across the interventions. Skill growth curves are not statistically significantly different between China REACH and Jamaican interventions. We find evidence of the importance of early investment. CONCLUSIONS: The China REACH intervention significantly improves the development of multiple skills. At the same ages, treatment effect sizes and skill growth curves are comparable across the Jamaica and China REACH interventions, despite differences in scale and cultural settings. The scale of the program is much greater in China than in Jamaica, showing that the Jamaican curriculum can be effectively expanded to larger populations. Annual costs per child are roughly $500 (2015 US dollars). [ABSTRACT FROM AUTHOR]

OBJECTIVES: BiliSpec is a low-cost spectrophotometric reader and disposable paper-based strip to quantify total serum bilirubin from several blood drops. This study was a prospective evaluation of BiliSpec in 2 neonatal wards in Malawi compared with a reference standard bilirubinometer over a large range of bilirubin and hematocrit levels. METHODS: The accuracy of BiliSpec and a transcutaneous bilirubinometer were compared with the reference standard of spectrophotometry for 475 blood samples collected from 375 subjects across a range of total serum bilirubin concentrations from 0.0 to 33.7 mg/dL. The development of error grids to assess the clinical effects of measurement differences is reported. RESULTS: BiliSpec was found to have a mean bias of -0.48 mg/dL and 95% limits of agreement of -5.09 mg/dL to + 4.12 mg/dL. Results show 90.7% of BiliSpec measurements would have resulted in the same clinical decision as the reference standard, whereas 55.0% of transcutaneous bilirubin measurements would have resulted in the same clinical decision as the reference standard. CONCLUSIONS: This evaluation supports use of BiliSpec to provide accurate, low-cost, point-ofcare bilirubin measurements in low-resource hospitals. Future work is needed to evaluate BiliSpec among a larger number of users. [ABSTRACT FROM AUTHOR]

Access to services for children and youth with special health care needs (CYSHCN) have typically emphasized coverage, service, timeliness, and capability. Yet families of CYSHCN continue to describe a fragmented health care system with significant unmet needs. For many years, the concept of access to services has focused on the services themselves, rather than starting with the needs of CYSHCN and their families. Meeting these needs should be grounded in health equity, address systemic racism and ableism, and emphasize the life course and journey of those with such needs and their families. In this paper, we start with the simple concept of asking that care is available for CYSHCN regardless of when, where, and how they need it. Access to services is built on relationships instead of a series of transactions. Opportunities for innovation include creating a single point of service entry; determining services based on need instead of diagnosis; and emphasizing service continuity, transition, and a place-based approach. The innovations reimagine access throughout the life course, centering care around a proactive, human-centered system that addresses health and all of its determinants. The landscape of antipoverty investments, cultural humility, workforce changes, technology, and human-centered thought in design have the potential to further transform the conceptual framework to improve access to services for CYSHCN and their families. [ABSTRACT FROM AUTHOR]

OBJECTIVES: In the United States, autistic individuals experience disproportionate physical and mental health challenges relative to non-autistic individuals, including higher rates of co-occurring and chronic conditions and lower physical, social, and psychological health-related quality of life. The Autism Intervention Research Network on Physical Health (AIR-P) is an interdisciplinary, multicenter research network for scientific collaboration and infrastructure that aims to increase the life expectancy and quality of life for autistic individuals, with a focus on underserved or vulnerable populations. The current paper describes the development of the AIR-P Research Agenda. METHODS: Development of the research agenda involved an iterative and collaborative process between the AIR-P Advisory Board, Steering Committee, and Autistic Researcher Review Board. The methodology consisted of 3 phases: (1) ideation and design, (2) literature review and synthesis; and (3) network engagement. RESULTS: Six core research priorities related to the health of autistic individuals were identified: (1) primary care services and quality, (2) community-based lifestyle interventions, (3) health systems and services, (4) gender, sexuality, and reproductive health, (5) neurology, and (6) genetics. Specific topics within each of these priorities were identified. Four cross-cutting research priorities were also identified: (1) neurodiversity-oriented care, (2) facilitating developmental transitions, (3) methodologically rigorous intervention studies, and (4) addressing health disparities. CONCLUSIONS: The AIR-P Research Agenda represents an important step forward for enacting large-scale health-promotion efforts for autistic individuals across the lifespan. This agenda will catalyze autism research in historically underrepresented topic areas while adopting a neurodiversity-oriented approach to health-promotion. [ABSTRACT FROM AUTHOR]

There is an insufficient number of specialty developmental-behavioral pediatrics (DBP) physicians, despite nearly 25% of children and adolescents having a developmental, learning, behavioral, or emotional problem. In the nearly 20 years since becoming a board-certified subspecialty, the definition of DBP clinical practice remains somewhat unclear. This lack of clarity likely contributes to recruitment challenges and workforce issues, and limited visibility of DBP among parents, other professionals, payors, and administrators. Defining DBP is therefore an important step in the survival and growth of the field. In this paper, we describe the methodology used to develop this definition along with the origins of DBP, the persistent challenges to defining its scope, what training in DBP involves, and what distinguishes DBP from other overlapping fields of medicine. We propose the following definition of DBP: developmental-behavioral pediatrics (DBP) is a board-certified, medical subspecialty that cares for children with complex and severe DBP problems by recognizing the multifaceted influences on the development and behavior of children and addressing them through systems-based practice and a neurodevelopmental, strength-based approach that optimizes functioning. Developmental behavioral pediatricians care for children from birth through young adulthood along a continuum including those suspected of, at risk for, or known to have developmental and behavioral disorders. [ABSTRACT FROM AUTHOR]