2024 Update of the RECOVER-Adult Long COVID Research Index.

Importance: Classification of persons with long COVID (LC) or post-COVID-19 condition must encompass the complexity and heterogeneity of the condition. Iterative refinement of the classification index for research is needed to incorporate newly available data as the field rapidly evolves.

Objective: To update the 2023 research index for adults with LC using additional participant data from the Researching COVID to Enhance Recovery (RECOVER-Adult) study and an expanded symptom list based on input from patient communities.

Impairment Types and Combinations Among Adolescents and Young Adults with Disabilities: Colorado 2014-2018.

Objective: Understanding the types of functional challenges faced by adolescents and young adults with disabilities (AYA-WD) can help payers, clinicians, community-based service providers, and policymakers recognize and meet needs. This paper describes state-level prevalence rates for 1) AYA-WD overall and for 2) impairment types singly and in combinations; and 3) examines how rates may differ between those insured by Medicaid versus commercial insurance.

Methods: This descriptive study uses Colorado's All Payer Claims Dataset 2014-2018 to identify insured 10- to 26-year-olds (Medicaid only: 333,931; commercially only: 392,444).

Improving Health Care Transitions for Children and Youth With Special Health Care Needs.

Health care transitions (HCT) from pediatric to adult health care remain a challenge for children and youth with special health care needs (CYSHCN), their families and their clinicians. While the HCT literature has expanded, gaps remain in how to improve health outcomes during transitions. HCTs broadly encompass three key domain areas: transition planning, transfer to adult health care clinicians or an adult model of care, and integration into an adult care/model of care.

Investigating Protective Factors Associated With Mental Health Outcomes in Sexual Minority Youth.

Purpose: The aim of this study is to identify and evaluate the efficacy of adolescent protective factors against mental health (MH) outcomes in young adulthood of sexual minority identifying youth (SMY).

Methods: Using data from the National Longitudinal Study of Adolescent to Adult Health, we identified potential protective factors (e.g.

Are We Reaching Everyone? A Cross-Sectional Study of Telehealth Inequity in the COVID-19 Pandemic in an Urban Academic Pediatric Primary Care Clinic.

The COVID-19 (coronavirus disease 2019) pandemic brought rapid expansion of pediatric telehealth to maintain patient access to care while decreasing COVID-19 community spread. We designed a retrospective, serial, cross-sectional study to investigate if telehealth implementation at an academic pediatric practice led to disparities in health care access. Significant differences were found in pre-COVID-19 versus during COVID-19 patient demographics.

Adherence to Child Attention-Deficit/Hyperactivity Disorder Treatment Guidelines in Medical Homes-Results from a National Survey.

Objective: Having primary care delivered through a medical home is believed to improve mental health care delivery to children. Children with attention-deficit/hyperactivity disorder (ADHD) are commonly treated in pediatric practices, yet little is known about ADHD treatment patterns in medical homes. Our objective was to assess for treatment variation depending on parent-perceived medical home (PPMH) status.

Seeking equilibrium: The experiences of parents of infants and toddlers who are deaf/hard-of-hearing.

Purpose: To identify key determinants of the quality of life of caregivers of infants and toddlers (< 3 years) who are deaf/hard-of-hearing (DHH).

Methods: We conducted focus groups with providers for children who are DHH as well as interviews with hearing parents of infants and toddlers who are DHH. A multi-step qualitative analysis on interview data using grounded theory was performed, and an iterative analysis to investigate codes to characterize specific topics in caring for deaf infants and toddlers was conducted.

Care Quality and Spending Among Commercially Insured Children With Disabilities.

Objective: To identify opportunities to improve care value for children with disabilities (CWD), we examined CWD prevalence within a commercially insured population and compared outpatient care quality and annual health plan spending levels for CWD relative to children with complex medical conditions without disabilities; children with chronic conditions that are not complex; and children without disabling, complex, or chronic conditions.

Methods: This cross-sectional study comprised 1,118,081 person-years of Blue Cross Blue Shield Massachusetts data for beneficiaries aged 1 to 19years old during 2008 to 2012. We combined the newly developed and validated Children with Disabilities Algorithm with the Pediatric Medical Complexity Algorithm to identify CWD and non-CWD subgroups.

Caring for Children with Special Health Care Needs: Profiling Pediatricians and Their Health Care Resources.

Background and Objectives Pediatricians face numerous challenges in providing care for children with special health care needs (CSHCN). Few studies have described health care resources available to support pediatricians to care for CSHCN. This study investigated available resources to care for CSHCN and factors associated with having a greater proportion of CSHCN in practice.

Self-management and Transition to Adult Health Care in Adolescents and Young Adults: A Team Process.

As health care continues to evolve, the need for more effective health care transition (HCT) for all youth, but particularly children with chronic conditions and special health care needs, becomes even more important. With more than 90% of adolescents with chronic medical conditions now surviving into adulthood, suboptimal transition can lead to poorer quality of life and less successful adulthood.Through a series of clinical vignettes, the challenges of HCT are presented herein and accompanied by comments that underscore how these adolescents can best be helped to transition to successful adulthood.

Receiving Providers' Perceptions on Information Transmission During Interfacility Transfers to General Pediatric Floors.

Background: Pediatric patients can present to a medical facility and subsequently be transferred to a different hospital for definitive care. Interfacility transfers require a provider handoff across facilities, posing risks that may affect patient outcomes.

Objectives: The goal of this study was to describe the thoroughness of information transmission between providers during interfacility transfers, to describe perceived errors in care at the posttransfer facility, and to identify potential associations between thoroughness of information transmission and perceived errors in care.

Familial Caregiver and Physician Perceptions of the Family-Physician Interactions During Interfacility Transfers.

Background And Objectives: Children with special health care needs (CSHCN) have frequent hospitalizations and high specialty care utilization. If they initially present to a medical facility not capable of providing their definitive care, these children often experience an interfacility transfer. This transition has potential to impose hardships on familial caregivers.

Care Coordination and Comprehensive Electronic Health Records are Associated With Increased Transition Planning Activities.

Objective: Youth with special health care needs (YSHCN) require assistance from their pediatricians to transition to adult care. There are few data on what transition resources pediatricians have. In this article we discuss whether care coordination and/or comprehensive electronic health record (CEHR) implementation are associated with improved transition processes.

Quality of Primary Care for Children With Disabilities Enrolled in Medicaid.

Objective: The quality of primary care delivered to Medicaid-insured children with disabilities (CWD) is unknown. We used the newly validated CWD algorithm (CWDA) to examine CWD prevalence among Medicaid enrollees 1 to 18 years old, primary care quality for CWD, and differences in primary care quality for CWD and non-CWD.

Methods: Cross-sectional study using 2008 Medicaid Analytic eXtract claims data from 9 states, including children with at least 11 months of enrollment (N = 2,671,922 enrollees).

Pediatricians' Comfort Level in Caring for Children With Special Health Care Needs.

Background: Few studies have investigated pediatrician attitudes about providing primary medical care for children with special health care needs. The objective of this study was to determine pediatrician perspectives on their comfort level in providing care and on where the medical home should be for children with chronic medical and developmental conditions.

Methods: Survey of pediatricians in California in 2014.

Profiling Interfacility Transfers for Hospitalized Pediatric Patients.

Background And Objective: The hospital-to-hospital transfer of pediatric patients is a common practice that is poorly understood. To better understand this practice, we examined a national database to profile pediatric interfacility transfers.

Methods: We used the 2012 Kids' Inpatient Database to examine characteristics of hospitalized pediatric patients (<21 years; excluding pregnancy diagnoses) with a transfer admission source.

Interfacility Transfers to General Pediatric Floors: A Qualitative Study Exploring the Role of Communication.

Background: Children with special health care needs often require health services that are only provided at subspecialty centers. Such children who present to nonspecialty hospitals might require a hospital-to-hospital transfer. When transitioning between medical settings, communication is an integral aspect that can affect the quality of patient care.

Cystic Fibrosis Transitions of Care: Lessons Learned and Future Directions for Cystic Fibrosis.

Advances in cystic fibrosis (CF) care transformed the condition from one considered lethal by age 7 into a chronic illness (median lifespan, >40 years). With the growing numbers of adults with CF voicing their preference for care in age appropriate settings, the CF community met the challenge by developing an adult-focused care system modeled on the highly successful pediatric CF centers. Adult CF programs ensure lifelong CF specialty care.

Medical Homes for Children With Special Health Care Needs: Primary Care or Subspecialty Service?

Objective: To examine primary care pediatricians' (PCPs) beliefs about whether the family-centered medical home (FCMH) should be in primary or subspecialty care for children with different degrees of complexity; and to examine practice characteristics associated with these beliefs.

Methods: Data from the American Academy of Pediatrics Periodic Survey (PS 79) conducted in 2012 were analyzed. Outcomes were agreement/strong agreement that 1) primary care should be the FCMH locus for most children with special health care needs (CSHCN) and 2) subspecialty care is the best FCMH locus for children with rare or complex conditions.

Development of the Children With Disabilities Algorithm.

Background: A major impediment to understanding quality of care for children with disabilities (CWD) is the lack of a method for identifying this group in claims databases. We developed the CWD algorithm (CWDA), which uses International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) codes to identify CWD.

Methods: We conducted a cross-sectional study that (1) ensured each of the 14,567 codes within the 2012 ICD-9-CM codebook was independently classified by 3 to 9 pediatricians based on the code's likelihood of indicating CWD and (2) triangulated the resulting CWDA against parent and physician assessment of children's disability status by using survey and chart abstraction, respectively.

Risk Factors for Prolonged Length of Stay or Complications During Pediatric Respiratory Hospitalizations.

Background And Objectives: Respiratory illnesses are the leading cause of pediatric hospitalizations in the United States, and a major focus of efforts to improve quality of care. Understanding factors associated with poor outcomes will allow better targeting of interventions for improving care. The objective of this study was to identify patient and hospital factors associated with prolonged length of stay (LOS) or complications during pediatric hospitalizations for asthma or lower respiratory infection (LRI).