The Indian Academy of Pediatrics and Directorate General of Health Services, Government of India White Paper on Transition of Care for Youth with Special Health Care Needs.

Over the years, survival of children with chronic diseases has significantly improved and a large proportion of them now are entering into adulthood. Transition of Care (ToC) of such patients with having childhood onset of chronic diseases to the adult health care system is well organized in developed countries, although it is an emerging concept in India. In situations where the systems for ToC are not in place, such cases are fraught with unsatisfactory health outcomes. With proper ToC in place, these patients are likely to receive uninterrupted care by the adult care physicians and hence reach their full potential. This document highlights the need, rationale and way forward for ToC of youth with special health care needs (YSHCN) across the country. It also describes the standard operating procedures to develop the ToC at a hospital level for clinicians and administrators.

Improving Access to Specialty Pediatric Care: Innovative Referral and eConsult Technology in a Specialized Acute Care Hospital.

Background: The COVID-19 pandemic has exacerbated wait times for pediatric specialty care. Transformative technologies such as electronic referral (eReferral-automation of patient information) and electronic consultations (eConsult-asynchronous request for specialized advice by primary care providers) have the potential to increase timely access to specialist care. The objective of this study was to present an overview of the current state and characteristics of referrals directed to a pediatric ambulatory medical surgery center, with an emphasis on the innovative use of an eConsult system and to indicate key considerations for system improvement. Methods: This cross-sectional study was conducted at a specialized pediatric acute care hospital in Ottawa, Ontario. Secondary data were obtained over a 2-year period during the COVID-19 pandemic (2019-2022). To gain insights and identify areas of improvement related to the factors pertaining to referrals and eConsults at the process and system levels, quality improvement (QI) methodologies were employed. Descriptive statistics provide a summary of the trends and characteristics of referrals and the utilization of eConsult. Results: Among the 113,790 referrals received, 31,430 were denied. Most common reasons for referral denial were other/null (e.g., unspecified) (29.3%), inappropriate referrals (12.6%), and duplicate referrals (12.4%). Four clinics (e.g., endocrinology, cardiology, neurology, and neurosurgery) reported a total of 277 eConsults, with endocrinology accounting for 95.0% of all eConsults. QI findings revealed the need for standardized workflows among specialties and ensuring that eConsult options are accessible and integrated within the electronic medical record (EMR). Conclusions: Refining the pediatric referral management process and optimizing eConsult through existing clinical systems have the potential to improve the timeliness and quality of specialty care. The results inform future research initiatives targeting improved access to pediatric specialty care and serve as a benchmark for hospitals utilizing EMRs and eConsult.

Cost-effectiveness of running a paediatric oncology unit in Ethiopia.

OBJECTIVE: To estimate the cost-effectiveness of running a paediatric oncology unit in Ethiopia to inform the revision of the Ethiopia Essential Health Service Package (EEHSP), which ranks the treatment of childhood cancers at a low and medium priority. METHODS: We built a decision analytical model-a decision tree-to estimate the cost-effectiveness of running a paediatric oncology unit compared with a do-nothing scenario (no paediatric oncology care) from a healthcare provider perspective. We used the recently (2018-2019) conducted costing estimate for running the paediatric oncology unit at Tikur Anbessa Specialized Hospital (TASH) and employed a mixed costing approach (top-down and bottom-up). We used data on health outcomes from other studies in similar settings to estimate the disability-adjusted life years (DALYs) averted of running a paediatric oncology unit compared with a do-nothing scenario over a lifetime horizon. Both costs and effects were discounted (3%) to the present value. The primary outcome was incremental cost in US dollars (USDs) per DALY averted, and we used a willingness-to-pay (WTP) threshold of 50% of the Ethiopian gross domestic product per capita (USD 477 in 2019). Uncertainty was tested using one-way and probabilistic sensitivity analyses. RESULTS: The incremental cost and DALYs averted per child treated in the paediatric oncology unit at TASH were USD 876 and 2.4, respectively, compared with no paediatric oncology care. The incremental cost-effectiveness ratio of running a paediatric oncology unit was USD 361 per DALY averted, and it was cost-effective in 90% of 100 000 Monte Carlo iterations at a USD 477 WTP threshold. CONCLUSIONS: The provision of paediatric cancer services using a specialised oncology unit is most likely cost-effective in Ethiopia, at least for easily treatable cancer types in centres with minimal to moderate capability. We recommend reassessing the priority-level decision of childhood cancer treatment in the current EEHSP.

Adapting a preschool disruptive behavior group for the underserved in pediatric primary care practice.

INTRODUCTION: While behavioral parent training (BPT) is the first line treatment for preschool aged children with disruptive behavior, only a fraction of families receive these therapies. The integration of BPT within the pediatric primary care (PPC) setting is a promising way to address this need, as the PPC setting is the first and only point of contact for most children diagnosed with mental health disorders. We piloted a clinical innovation by implementing an adapted BPT group in an urban, academic, PPC practice, serving a low-income, predominantly Black population. METHOD: Using a formative program development approach and a cultural adaptation framework, structural and cultural adaptations to the program were implemented to increase engagement and adaptability of the group to meet the needs of our PPC population. RESULTS: Learnings indicated that these adaptations were feasible and acceptable to families. Specifically, they were effective in engaging families and transforming the practice of primary care providers. DISCUSSION: Our work offers a case example to guide efforts to thoughtfully and effectively adapt evidence-based interventions for disruptive behavior in primary care settings. These processes provide one strategy to ameliorate behavioral health disparities in diverse, racial/ethnic minority populations. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Contributions of Key Components of a Medical Home on Child Health Outcomes.

OBJECTIVES: The medical home model is a widely accepted model of team-based primary care. We examined five components of the medical home model in order to better understand their unique contributions to child health outcomes. METHODS: We analyzed data from the 2016-2017 National Survey of Children's Health (NSCH) to assess five key medical home components - usual source of care, personal doctor/nurse, family-centered care, referral access, and coordinated care - and their associations with child outcomes. Health outcomes included emergency department (ED) visits, unmet health care needs, preventive medical visits, preventive dental visits, health status, and oral health status. We used multivariate regression controlling for child characteristics including age, sex, primary household language, race/ethnicity, income, parental education, health insurance coverage, and special healthcare needs. RESULTS: Children who were not white, living in non-English households, with less family income or education, or who were uninsured had lower rates of access to a medical home and its components. A medical home was associated with beneficial child outcomes for all six of the outcomes and the family-centered care component was associated with better results in five outcomes. ED visits were less likely for children who received care coordination (aOR 0.81, CI 0.70-0.94). CONCLUSIONS FOR PRACTICE: Our study highlights the role of key components of the medical home and the importance of access to family-centered health care that provides needed coordination for children. Health care reforms should consider disparities in access to a medical home and specific components and the contributions of each component to provide quality primary care for all children.

Direct-to-patient telehealth equity: Reaching diverse pediatric populations in primary care.

INTRODUCTION: Telehealth is the use of electronic information and technology for long-distance clinical care. In direct-to-patient (DTP) telehealth, the patient initiates care from a personal computer or mobile device to a medical provider. While information on standard clinic-to-clinic telehealth exists, less is known about DTP telehealth in pediatric populations. Using quantitative and qualitative data, we examined DTP telehealth for low-income pediatric patient-families and compared the experience of English and non-English speakers. METHOD: Telehealth visits for acute and preventive care took place from April 2020 to May 2020 at a pediatric primary care clinic (80% Medicaid-insured, 40% non-English-speaking). Patients and primary care providers conducted the visit through the clinic's portal or other platforms (WhatsApp, FaceTime, Zoom). Providers completed an electronic survey with patient feedback about the telehealth experience and their own observations. An iterative inductive/deductive approach informed a coding scheme for free-text survey responses consisting of five domains. RESULTS: REDCap surveys were completed for 258 (52%) of telehealth visits. There was an overrepresentation of English visits compared to the overall clinic population and the majority of visits were via mobile phone. Visits with English speakers utilized the patient portal and had positive process ease ratings more often than those with non-English speakers. Providers rated most telehealth visits as satisfactory, with contributing elements including family call environment, technology process and experience, value added, and barriers. DISCUSSION: Expanding telehealth in pediatrics without worsening health disparities requires building digital health that is user-friendly on mobile technology, facilitating patient preferred language, and simplifying logistical processes. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Telehealth: Opportunities to Improve Access, Quality, and Cost in Pediatric Care.

The use of telehealth technology to connect with patients has expanded significantly over the past several years, particularly in response to the global coronavirus disease 2019 pandemic. This technical report describes the present state of telehealth and its current and potential applications. Telehealth has the potential to transform the way care is delivered to pediatric patients, expanding access to pediatric care across geographic distances, leveraging the pediatric workforce for care delivery, and improving disparities in access to care. However, implementation will require significant efforts to address the digital divide to ensure that telehealth does not inadvertently exacerbate inequities in care. The medical home model will continue to evolve to use telehealth to provide high-quality care for children, particularly for children and youth with special health care needs, in accordance with current and evolving quality standards. Research and metric development are critical for the development of evidence-based best practices and policies in these new models of care. Finally, as pediatric care transitions from traditional fee-for-service payment to alternative payment methods, telehealth offers unique opportunities to establish value-based population health models that are financed in a sustainable manner.

NHS 111 Clinical Assessment Services: paediatric consultations.

Around the UK, commissioners have different models for delivering NHS 111, General Practice (GP) out-of-hours and urgent care services, focusing on telephony to help deliver urgent and emergency care. During the (early phases of the) COVID-19 pandemic, NHS 111 experienced an unprecedented volume of calls. At any time, 25%-30% of calls relate to children and young people (CYP). In response, the CYP's Transformation and Integrated Urgent Care teams at NHS England and NHS Improvement (NHSE/I) assisted in redeploying volunteer paediatricians into the integrated urgent care NHS 111 Clinical Assessment Services (CAS), taking calls about CYP. From this work, key stakeholders developed a paediatric 111 consultation framework, as well as learning outcomes, key capabilities and illustrations mapped against the Royal College of Paediatrics and Child Health (RCPCH) Progress curriculum domains, to aid paediatricians in training to undertake NHS 111 activities. These learning outcomes and key capabilities have been endorsed by the RCPCH Curriculum Review Group and are recommended to form part of the integrated urgent care service specification and workforce blueprint to improve outcomes for CYP.

Second Paediatric Strategy Forum for anaplastic lymphoma kinase (ALK) inhibition in paediatric malignancies: ACCELERATE in collaboration with the European Medicines Agency with the participation of the Food and Drug Administration.

The first (2017) and sixth (2021) multistakeholder Paediatric Strategy Forums focused on anaplastic lymphoma kinase (ALK) inhibition in paediatric malignancies. ALK is an important oncogene and target in several paediatric tumours (anaplastic large cell lymphoma [ALCL], inflammatory myofibroblastic tumour [IMT], neuroblastoma and hemispheric gliomas in infants and young children) with unmet therapeutic needs. ALK tyrosine kinase inhibitors have been demonstrated to be active both in ALK fusion-kinase positive ALCL and IMT. ALK alterations differ, with fusions occurring in ALCL, IMT and gliomas, and activating mutations and amplification in neuroblastoma. While there are many ALK inhibitors in development, the number of children diagnosed with ALK driven malignancies is very small. The objectives of this ALK Forum were to (i) Describe current knowledge of ALK biology in childhood cancers; (ii) Provide an overview of the development of ALK inhibitors for children; (iii) Identify the unmet needs taking into account planned or current ongoing trials; (iv) Conclude how second/third-generation inhibitors could be evaluated and prioritised; (v) Identify lessons learnt from the experience with ALK inhibitors to accelerate the paediatric development of other anti-cancer targeted agents in the new regulatory environments. There has been progress over the last four years, with more trials of ALK inhibitors opened in paediatrics and more regulatory submissions. In January 2021, the US Food and Drug Administration approved crizotinib for the treatment of paediatric and young adult patients with relapsed or refractory ALCL and there are paediatric investigation plans (PIPs) for brigatinib and for crizotinib in ALCL and IMT. In ALCL, the current goal is to investigate the inclusion of ALK inhibitors in front-line therapy with the aim of decreasing toxicity with higher/similar efficacy compared to present first-line therapies. For IMT, the focus is to develop a joint prospective trial with one product in children, adolescents and adults, taking advantage of the common biology across the age spectrum. As approximately 50% of IMTs are ALK-positive, molecular analysis is required to identify patients to be treated with an ALK inhibitor. For neuroblastoma, crizotinib has not shown robust anti-tumour activity. A focused and sequential development of ALK inhibitors with very good central nervous system (CNS) penetration in CNS tumours with ALK fusions should be undertaken. The Forum reinforced the strong need for global academic collaboration, very early involvement of regulators with studies seeking possible registration and early academia-multicompany engagement. Innovations in study design and conduct and the use of 'real-world data' supporting development in these rare sub-groups of patients for whom randomised clinical trials are not feasible are important initiatives. A focused and sequenced development strategy, where one product is evaluated first with other products being assessed sequentially, is applicable for ALK inhibitors and other medicinal products in children.

The Pediatric Emergency Research Network: A Decade of Global Research Cooperation in Pediatric Emergency Care.

OBJECTIVES: The Pediatric Emergency Research Network (PERN) was launched in 2009 with the intent for existing national and regional research networks in pediatric emergency care to organize globally for the conduct of collaborative research across networks. METHODS: The Pediatric Emergency Research Network has grown from 5- to 8-member networks over the past decade. With an executive committee comprising representatives from all member networks, PERN plays a supportive and collaborative rather than governing role. The full impact of PERN's facilitation of international collaborative research, although somewhat difficult to quantify empirically, can be measured indirectly by the observed growth of the field, the nature of the increasingly challenging research questions now being addressed, and the collective capacity to generate and implement new knowledge in treating acutely ill and injured children. RESULTS: Beginning as a pandemic response with a high-quality retrospective case-controlled study of H1N1 influenza risk factors, PERN research has progressed to multiple observational studies and ongoing global randomized controlled trials. As a recent example, PERN has developed sufficient network infrastructure to enable the rapid initiation of a prospective observational study in response to the current coronavirus disease 2019 pandemic. In light of the ongoing need for translation of research knowledge into equitable clinical practice and to promote health equity, PERN is committed to a coordinated international effort to increase the uptake of evidence-based management of common and treatable acute conditions in all emergency department settings. CONCLUSIONS: The Pediatric Emergency Research Network's successes with global research, measured by prospective observational and interventional studies, mean that the network can now move to improve its ability to promote the implementation of scientific advances into everyday clinical practice. Achieving this goal will involve focus in 4 areas: (1) expanding the capacity for global randomized controlled trials; (2) deepening the focus on implementation science; (3) increasing attention to healthcare disparities and their origins, with growing momentum toward equity; and (4) expanding PERN's global reach through addition of sites and networks from resource-restricted regions. Through these actions, PERN will be able to build on successes to face the challenges ahead and meet the needs of acutely ill and injured children throughout the world.

Need for Integrated Behavior Health Model in Primary Care.

Children and adolescents with clinically concerning behavioral health conditions face several barriers to accessing specialized mental health care. One proposed solution is to improve and expand integrated care provided in the primary health care provider's office. Several strategies can increase pediatrician comfort and willingness to collaborate in diagnosing and treating behavioral health conditions, and increased utilization of new technologies (such as telehealth) are likely to play an increasingly important role in the process.

The Many Roles of Pediatric Integrated Behavioral Health Specialists.

The primary care pediatric setting is intended to provide continuous and comprehensive care throughout a child's life, ensuring overall well-being. Routinely scheduled well-child visits are ideal to assess developmental progress, environmental health, behavior/psychosocial issues, and other concerns. Delivering integrated behavioral health (IBH) in the primary care setting may aid in identifying any early concerns or difficulties and provides resources and support when these issues first emerge; thus, promoting the child's well-being. IBH should be engaged early and often to establish a relationship with families and follow them as the child develops, regardless of the presence of a precipitating behavior concern.

Building a Community Partnership in a Pandemic: NJ Pediatric Residency Advocacy Collaborative.

The New Jersey Pediatric Residency Advocacy Collaborative (NJPRAC) is a statewide collaborative with faculty leads from each of the 10 New Jersey pediatric residency programs. The 2 major goals of the collaborative were to build community partnerships between pediatric residency programs and local organizations and develop a core advocacy curriculum. In this article, we focus on how the NJPRAC built community partnerships with Family Success Centers (FSCs) across the state over the course of a 2-year period. FSCs are located within every county in the state and fall under the New Jersey Department of Children and Families, providing resources and supports for families in crisis, with a focus on child abuse prevention services. Amid this growing partnership, the coronavirus disease 2019 (COVID-19) pandemic forced the NJPRAC to swiftly pivot its partnership and develop innovative programs to support families during the COVID-19 pandemic. As FSC leadership communicated families' concerns to the collaborative, we initiated the Virtual House Call webinar, which incorporated pediatricians, community leaders, and allied health professionals to answer COVID-19 questions. These webinars quickly expanded into weekly interprofessional series, with experts in mental health, law, nutrition, and dentistry partnering with pediatricians from various subspecialties. Key to the webinars' success was responding in real time to audience questions, collaborating with the FSC leadership on content, and garnering the support from the local New Jersey Chapter, American Academy of Pediatrics and the national American Academy of Pediatrics. A key challenge remains to meaningfully incorporate pediatric trainees into community partnerships. The NJPRAC plans to continue the Virtual House Call series with continuous input from the FSCs and participating families.

Are Spanish-Speaking Families Less Satisfied with Care in Pediatric Otolaryngology?

OBJECTIVES/HYPOTHESIS: Language barriers may impact family experience, which is a key measure of healthcare quality. We compared family satisfaction between Spanish-speaking families (SSF) and English-speaking families (ESF) in pediatric otolaryngology. STUDY DESIGN: Retrospective cohort study. METHODS: Responses from the Family Experience Survey (FES), a hospital quality benchmarking survey, were analyzed from 2017 to 2019 at one academic pediatric otolaryngology practice. Question responses were compared between SSF versus ESF using mixed effect logistic regression models, adjusting for patient age, medical complexity, and insurance. RESULTS: A total of 4,964 FES survey responses were included (14% SSF). In multivariate analysis adjusting for age, medical complexity, and insurance, SSF were 1.7 times more likely than ESF to rate their provider with the highest rating (i.e. 9-10/10; 95% confidence interval [CI] 1.24-2.22). However, SSF were less likely than ESF to provide the highest rating on many individual aspects of care, including whether providers explained things intelligibly (odds ratio [OR] 0.43, 95% CI 0.25-0.74), listened carefully (OR 0.36, 95% CI 0.28-0.47), knew their medical child's history (OR 0.53, 95% CI 0.44-0.64), provided understandable information (OR 0.36, 95% CI 0.16-0.83), spent sufficient time with them (OR 0.38, 95% CI 0.31-0.48), allowed them to discuss their questions (OR 0.57, 95% CI 0.47-0.70), or had enough input in their children's' care (OR 0.46, 95% CI 0.26-0.80). CONCLUSIONS: In a large cohort of pediatric otolaryngology patients, SSF rated many individual aspects of their child's care less positively compared to ESF, despite rating their provider highly. Further research is needed to explore the reasons for these differences and how they can be improved. LEVEL OF EVIDENCE: 4 Laryngoscope, 131:E2393-E2401, 2021.

Countermeasures against COVID-19: how to navigate medical practice through a nascent, evolving evidence base - a European multicentre mixed methods study.

OBJECTIVES: In a previously published Delphi exercise the European Pediatric Dialysis Working Group (EPDWG) reported widely variable counteractive responses to COVID-19 during the first week of statutory public curfews in 12 European countries with case loads of 4-680 infected patients per million. To better understand these wide variations, we assessed different factors affecting countermeasure implementation rates and applied the capability, opportunity, motivation model of behaviour to describe their determinants. DESIGN: We undertook this international mixed methods study of increased depth and breadth to obtain more complete data and to better understand the resulting complex evidence. SETTING: This study was conducted in 14 paediatric nephrology centres across 12 European countries during the COVID-19 pandemic. PARTICIPANTS: The 14 participants were paediatric nephrologists and EPDWG members from 12 European centres. MAIN OUTCOME MEASURES: 52 countermeasures clustered into eight response domains (access control, patient testing, personnel testing, personal protective equipment policy, patient cohorting, personnel cohorting, suspension of routine care, remote work) were categorised by implementation status, drivers (expert opinion, hospital regulations) and resource dependency. Governmental strictness and media attitude were independently assessed for each country and correlated with relevant countermeasure implementation factors. RESULTS: Implementation rates varied widely among response domains (median 49.5%, range 20%-71%) and centres (median 46%, range 31%-62%). Case loads were insufficient to explain response rate variability. Increasing case loads resulted in shifts from expert opinion-based to hospital regulation-based decisions to implement additional countermeasures despite increased resource dependency. Higher governmental strictness and positive media attitude towards countermeasure implementation were associated with higher implementation rates. CONCLUSIONS: COVID-19 countermeasure implementation by paediatric tertiary care centres did not reflect case loads but rather reflected heterogeneity of local rules and of perceived resources. These data highlight the need of ongoing reassessment of current practices, facilitating rapid change in 'institutional behavior' in response to emerging evidence of countermeasure efficacy.

Adult growth hormone deficiency: Optimizing transition of care from pediatric to adult services.

OBJECTIVE: Most patients with childhood-onset growth hormone deficiency (CO-GHD) receive treatment with exogenous growth hormone (GH) to facilitate the attainment of their full potential adult height. Recent evidence suggests that continuing GH administration during the transition period between the end of linear growth and full adult maturity is necessary for proper body composition and bone and muscle health, and may also have beneficial effects on metabolic parameters, bone mineral density, and quality of life. The timing of this transition period coincides with the transfer of care from a pediatric to an adult endocrinologist, creating the potential for a care gap as a consequence of losing the patient to follow-up. DESIGN: An advisory board comprising both pediatric and adult endocrinologists was assembled to address current clinical unmet needs and to collaborate on a structured transitional plan for optimal management of patients with CO-GHD. INSIGHTS/CONCLUSION: The advisors suggest collaborative, multidisciplinary approaches to ensure continuity of care; ongoing testing and monitoring of GHD status into adulthood; and a clearly structured protocol that includes practical guidance for clinicians to establish best practices for transitioning older adolescents with persistent CO-GHD to adult care.

Growth and changes in the pediatric medical subspecialty workforce pipeline.

BACKGROUND: To inform discussions of pediatric subspecialty workforce adequacy and characterize its pipeline, we examined trends in first-year fellows in the 14 American Board of Pediatrics (ABP)-certified pediatric medical subspecialties, 2001-2018. METHODS: Data were obtained from the ABP Certification Management System. We determined, within each subspecialty, the annual number of first-year fellows. We assessed for changes in the population using variables available throughout the study period (gender, medical school location, program region, and program size). We fit linear trendlines and calculated χ2 statistics. RESULTS: The number of first-year pediatric medical subspecialty fellows increased from 751 in 2001 to 1445 in 2018. Fields with the growth of 3 or more fellows per year were Cardiology, Critical Care, Emergency Medicine, Gastroenterology, Neonatology, and Hematology Oncology (P value <0.05 for all). The number of fellows entering Adolescent Medicine, Child Abuse, Infectious Disease, and Nephrology increased at a rate of 0.5 fellows or fewer per year. Female American Medical Graduates represented the largest and growing proportions of several subspecialties. Distribution of programs by region and size were relatively consistent over time, but varied across subspecialties. CONCLUSIONS: The number of pediatricians entering medical subspecialty fellowship training is uneven and patterns of growth differ between subspecialties. IMPACT: The number of individuals entering fellowship training has increased between 2001 and 2018. Growth in the number of first-year fellows is uneven. Fields with the greatest growth: Critical Care, Emergency Medicine, and Neonatology. Fields with limited growth: Adolescent Medicine, Child Abuse, Infectious Disease, and Nephrology. Concerns about the pediatric medical subspecialty workforce are not explained by the number of individuals entering the fellowship.