Improvements In Pediatric Care Research Articles

Payment Innovations to Drive Improvements in Pediatric Care—The Integrated Care for Kids Model

Payment Innovations to Drive Improvements in Pediatric Care—The Integrated Care for Kids Model

Pediatric Quality Improvement in the Prehospital and Emergency Department Worlds: Tools and Examples to Guide Change

National organizations and national surveys have highlighted the gap in quality pediatric care and preparedness in emergency departments (EDs) over the last 20 years. The objective of this review is to provide a framework, summary, and list of common resources to guide general EDs in the use of proven quality improvement tools and resources towards meaningful improvement in pediatric care in the their institution. This review also highlights organizations, such as the Emergency Medical Services for Children Innovation and Improvement Center, that serve as leaders and repositories for collaborative work and expertise to improve pediatric emergency care anywhere in the United States.

Quality improvement in pediatric care.

We often overlook the importance of several safety issues such as identification of patients, timeout procedure, hand hygiene, handoff communication, and many others. This ignorance, along with many other issues, leads to medical error being ranked as a third leading cause of death in the U.S. Consequently, quality improvement (QI) has become one of the major subjects in healthcare despite a relatively short history. Improving quality is about making healthcare safe, effective, patient-centered, timely, efficient, and equitable. Understanding the need and methodology of QI as well as participation is now essential for physicians. Although basic QI methodology has not changed, one of the most fascinating changes in recent QI is conducting large-scale QI projects through multicenter networks. Prospective multicenter QI projects utilizing the Korean Neonatal Network are a substantial initiation of pediatric QI in Korea. The Korean Pediatric Society should set ambitious goals for QI activities for every primary care pediatrician and pediatric subspecialist.

Higher adaptive functioning and lower rate of psychotic comorbidity in married versus unmarried individuals with 22q11.2 deletion syndrome.

22q11.2 deletion syndrome (22q11.2DS) is a relatively common genetic disorder. Due to improvement in pediatric care, affected individuals live into adulthood, some of whom marry or have committed relationships, and reproduce. The current study aimed to identify the factors that discriminate between married and unmarried adults with 22q11.2DS. In the presents study, 90 adults with 22q11.2DS (48 men/42 women), aged 29.8 ± 10.3 years, were included in the analysis. Psychiatric comorbidities, IQ score, and adaptive functioning were assessed using gold-standard diagnostic tools. Demographic factors, marital status, and reproductive status were evaluated by self-reports. Of the sample 25 adults (27.7%) were married and 14 (56%) of those had children. Married, as compared to unmarried individuals, were older, had less psychotic comorbidities, showed higher adaptive functioning in all domains of the Vineland Adaptive Behavior Scale, and had higher rates of independent living and sustained employment. Unexpectedly, married individuals showed higher rates of mood disorders and full scale IQ scores did not discriminate between the groups. We propose that multiple factors are associated with marital status among individuals with 22q11.2DS. Identification of key personal, functional, and social characteristics of those who married and reproduced may help counseling health professionals and clinicians in advising affected individuals and their families.

Investing in Uncertainty: Young Adults with Life-Limiting Conditions Achieving Their Developmental Goals.

With improvements in pediatric care and technology, more young adults (YAs) with life-limiting conditions (LLCs) are surviving into adulthood. However, they have limited expectations to live beyond the first decade of adulthood. This study describes the monumental efforts required for YAs with LLCs to achieve their goals in an abbreviated life. The experiences and aspirations of YAs with LLCs to achieve their goals are relatively unknown. This report focuses on their experiences of living with uncertainty and its impact on achieving developmental goals. This study is one component of a larger descriptive study using an innovative bulletin board focus group to examine life experiences of YAs with LLCs. YAs with LLCs share the aspirations and goals of all YAs. Some participants demonstrated a striking capacity to navigate system barriers and achieve their goals, whereas others "got stuck" resulting in lost opportunities. Successful personal life investments were possible if resources were made available, coordinated, navigable, and responsive to new and special requests. Transformative changes to health, social care, and community services are necessary to support their YA ambitions. This study gave voice to those who were previously unheard and demonstrates the monumental hurdles YAs with LLCs face to achieve their goals. A palliative approach to care can mitigate unnecessary hardships and support their goals.

Demographic Features of a Mixed Urban/Rural Adult Sickle Cell Population:Opportunities and Challenges for Improving Health Care

Improvements in pediatric care since the 1970s as a result of Comprehensive Sickle Cell Centers, newborn screening, and prophylactic penicillin has led to an increase in life expectancy for patients with sickle cell disease (SCD) and has resulted in an increase in the number of adults with progressive end-organ damage/dysfunction. The inability of the U.S. Health Care system to adequately address the needs of this increasing patient population, along with stereotyping of SCD patients, has inevitably led to disparities in care, with an ever increasing disease burden and cost of care. Recognition of these issues has led U.S. Federal Health Care and Biomedical Research agencies (CDC, NIH, HRSA) to develop and implement programs to tackle this growing problem. Recently, NHLBI and NIMHD issued an RFA (HL-16-010) to address through implementation science the unmet health care needs of adolescents and adults (ages ≥15 years) with SCD. This program seeks to improve the health care and outcomes of this population through rigorous implementation of evidence-based guidelines. This initiative prompted us to analyze the demographic characteristics of the adult SCD population served by the GRU Sickle Cell Center, in an effort to better understand the opportunities and challenges posed by this initiative. The GRU Sickle Cell Center has been in existence since 1972, and serves ~1500 pediatric and adult SCD patients through its clinical program. Although based at the GRU campus in Augusta, GA (the second largest metropolitan area in the state with a population of >540,000), the Center has operated extensive outreach activities in rural south Georgia for the last 30 years, covering both pediatric and adult patients. The adult program holds monthly or every other month clinics in 5 sites in central, eastern, and southern Georgia. As of 2015, the Center has 580 active adult patients (>18 years). Fifty six percent are female and 44% male. Over half (54%) are followed at the Augusta clinic, and the remaining 46% in primarily rural outreach sites. The distribution of different genotypes is as follows: SS 392 (69%), SC 114 (20%), S-β+-thal 37 (6%), S-β0-thal 16 (3%) and others 11 (2%). The median age of the male patients is 31 (17-82), whereas for females is 34 (18-68). The median age for SS patients is 32 (17-65), and for SC is 34 (19-71). Overall, 62% of the population is in the 18-40 age group. Only 10% of the patients are >50. There is an age dependent increase in the proportion of female patients (70.6% > 61). Similarly, the proportion of SC patients increases to 56.3%, while SS decreases to 31.3% among subjects >61 years of age. Fifty-one percent of all patients (mostly SS) were prescribed hydroxyurea (HU). However, as reported earlier (Chand et al, ASH poster, 2014), only 59.9% had an adequate response; 26.3% were non-adherent, and 13.9% were on suboptimal doses. These data show that the adult SCD population in Georgia is young, with median age in the lower 30s. It also confirms the well-known observations that SC genotype and female gender are overrepresented in the older age groups. The opportunities to improve the health of this patient population in the next 5-10 years include: the existing outreach infrastructure, the partnership forged between the GRU Sickle Cell Center and some primary care practices (Family Medicine) and Hematology/Oncology practices in various outreach sites, and the implementation of an emergency department fast track pathway to treat vaso-occlusive crises in two of these outreach sites. The challenges, on the other hand, are persisting barriers to adequate/appropriate use of HU, partnering with community providers in the provision of appropriate pain management, implementation of evidence based transfusion practices in outlying hospitals and implementation of long-term evidence based health maintenance and primary care. DisclosuresNo relevant conflicts of interest to declare.

National childhood diabetes program activities in Turkey.

Recent census figures in Turkey show that out of a population of 76.6 million, 22.7 million (29.7%) are younger than 18 years old. The great majority (>95%) of pediatric cases of diabetes in Turkey are type 1 diabetes mellitus (T1DM). In recent years, with increase in number of pediatric endocrine centers around the country, the important issue of care for diabetic children and adolescents has been revived and major steps have been taken for improvement in pediatric care and its outreach to all diabetic children. The Childhood Diabetes Group continues its activities in cooperation with the Turkish Ministry of Health. A list of areas of interest of the Group include “School programs”, “Incidence/prevalence studies and national registry system”, “Educational guidelines for diabetes in children”, “Increasing the numbers of camps and summer schools for diabetic children”, “Organization of educational programs for the health team”, “National guidelines for transition of diabetic children to adult clinics”, “Improvement of school canteens”, “Educational spots” to improve awareness of diabetes. The activities of the Childhood Diabetes Group will be discussed in detail in this article.

Pediatric care improvement through nurse empowerment

The International Journal of Integrated Care (IJIC) is an online, open-access, peer-reviewed scientific journal that publishes original articles in the field of integrated care on a continuous basis.IJIC has an Impact Factor of 5.120 (2020 JCR, received in June 2021)The IJIC 20th Anniversary Issue was published in 2021.

Pediatric Neuropsychology

In Pediatric Neuropsychology: Medical Advances and Lifespan Outcomes, editors Ida Sue Baron and Celiane Rey-Casserly bring together experts to address the complex issue of pediatric diseases and their effects on the life course. With continuing improvements in pediatric care, mortality rates have improved for many once-fatal disorders, resulting in a growing and aging survivor population. The lifelong morbidity of this cohort has become a vital issue, which the editors hope to address. This text is a thorough overview on the neuropsychological outcomes for pediatric disease survivors; however, this complex and nascent field is only as good as the science behind it, and there is still more research needed before meaningful conclusions could be drawn. The authors make a heroic effort to discuss this complex issue, resulting in a resource that is informative but not always helpful. The first section of the text, Medical Disorders, constitutes its bulk. Each chapter focuses on a medical condition, providing a historic overview, a summary of pathophysiologic processes, and a review of neuropsychological outcomes. The medical content presupposes the reader's familiarity with jargon, but the flow in each chapter allows the appreciation of the diseases in their historical context. This disease-centric approach makes structural sense but results in a lack of uniformity in content depth and quality. Disorders with multisite databases and research consortiums, for example, chronic kidney disease, have tremendous banks of research to draw on, both in mortality and morbidity; other diseases are significantly limited in prevalence and/or research with great variability in the content and quality of contributing studies. Some authors are tasked with discussing disorders that have a significant body of neuropsychological literature to summarize (e.g., autism), and the space allotted is far too limited to do them justice. More importantly, only a few chapters provide clinical suggestions drawn from the literature. The lack of practical application related to neuropsychological outcome for some diagnoses leaves the reader with more questions than answers, particularly if one hopes to apply this research in clinical settings. Section 2, Impact on Educational Systems, covers special educational services and higher education. These chapters provide a targeted overview of the history and science behind educational policies, providing perspectives not typically covered in medical training. This information is covered in a systematic way that provides a helpful knowledge base, especially for clinicians who are unfamiliar with the science and legislation behind educational supports. Specific prompts that are immediately applicable to clinical scenarios are included. However, there is surprisingly little mentioned about contextual factors (e.g., family structure, socioeconomic status, mental health) that play a vital role in the outcome of the child, and an expansion of this section would be a welcome addition to the book's diversity of perspectives. Section 3, Methodological and Lifespan Developmental Considerations, is the most eclectic section. The most helpful chapters address the role of the neuropsychologist and the process of transitioning between pediatrics and adult medicine. A chapter on statistics is well written but poorly contextualized, and the section on cognitive reserve and the Flynn effect (i.e., the increase of intelligence scores in the population over time) is written at a theoretical level that lacks immediate relevance to the intended audience. Sections 2 and 3 overall provide an excellent scaffold to understand the topic and might have been more helpful had they come at the book's beginning. This text is an excellent reference for clinicians who care for children with chronic medical diseases across the lifespan. Primary physicians who struggle with this population's developmental and educational needs will gain an appreciation for the myriad of challenges; this population has overcome and will continue to face. Future editions are a necessity; the literature will expand as medical knowledge advances and disease cohorts' age. A greater emphasis on social, behavioral, and mental health would be a welcome perspective on life course outcomes. Finally, one hopes that future editions will emphasize “take-away” messages to bridge the gap between research and clinical settings.

Social outcomes of young adults with cerebral palsy

Background Functional abilities and social outcomes of young adults with cerebral palsy (CP) are relatively underresearched. Improvements in paediatric care have extended the expectation of achieving adulthood to 90%.Method Young adults aged 20–30 years with CP (n = 335) were compared to a population-based control group (n = 2,152) of the same age. Motor function, self-care abilities, educational level, and social outcomes were determined by questionnaire.Results Half the study group walked independently, but only 35.5% were independent in self-care. In comparison to their peers without disability, the study group's highest educational level was lower (p < .0001), as were rates of employment (36.3% compared with 80%), they were more likely to be living with parents (80% compared with 21%), to be single, and to have limited financial resources.Conclusion Young adults with CP are functionally and socially disadvantaged in contrast with their peers without disability. Self-care dependence, intellectual disability, and communication impairments contribute to these outcomes but are not solely responsible.

Publishing Quality Reports: Spreading Research and Innovation

In this month's issue of Pediatrics , Van Cleave et al1 describe barriers to and potential facilitators of publishing quality-improvement (QI) research, which are based on a 2007 workshop, key informant interviews, and a literature review over the years 2001–2009. We strongly agree with the authors' conclusion that “Publishing pediatric quality improvement presents challenges, but it advances the science of quality improvement, leading to more rapid improvement in pediatric care and children's health outcomes.” The importance of participating in QI activities is emphasized throughout clinical care. It is now a component of residency training and required for American Board of Pediatrics maintenance of certification. However, most practicing pediatricians have had little formal training in QI methods. In our experience, this has created confusion about the role of QI. For example, although there are … Address correspondence to Alex R. Kemper, MD, MPH, MS, Duke Clinical Research Institute and Department of Pediatrics, 2400 Pratt St, Room 0311 Terrace Level, Durham, NC 27705. E-mail: alex.kemper{at}duke.edu

Pulmonary Embolism in Pediatrics

Background Pulmonary embolism (PE), an uncommon diagnosis in pediatric patients, is a potentially life-threatening condition with significant morbidity and mortality. Improvements in pediatric care have resulted in survival of more chronically and critically ill children and thus, an increased number of pediatric patients at risk for this disease. Objectives We review the pathophysiology, risk factors, presentation, diagnosis, and initial management of PE in pediatric patients presenting to the Emergency Department. Discussion Although there is a significant lack of pediatric-specific literature pertaining to the diagnosis and management of PE, there are clear differences in the emergency approach to these patients, including specific risk factors and the inutility of clinical decision rules and D-dimer. Conclusion/Summary We outline these differences and present rational diagnostic and treatment algorithms.

Impact of Children With Medically Complex Conditions

The last half century has seen dramatic improvements in pediatric care with reduced mortality and prolonged survival of children with complex health conditions.1 Advances in neonatal care have improved survival rates of premature infants, infants with chronic lung disease, cardiac anomalies, birth defects, and genetic disorders.2,3 Medical treatments and surgical interventions have improved outcome and survival rates. More infants born with spina bifida and children with cystic fibrosis survive to adulthood.4,5 Medical equipment and technologic advances, gastrostomy tubes, and ventilator support have prolonged the lives of children and youth with neuromuscular disorders.6 Although these advances indicate success in neonatal, medical, and surgical care, an almost unavoidable consequence is that some infants who would not have survived now live with significant physical and neurologic disorders. These disorders can include lifelong disabilities, declining health, and increasing medical fragility and complexity. Children and youth with these conditions are increasing in number and are placing newer and greater demands on the health care system, which, in turn, … Address correspondence to Robert T. Burke, MD, MPH, FAAP, Special Needs Pediatrics, Nathstar Pediatrics, Hasbro Children's Hospital, 593 Eddy St, Providence, RI 02903. E-mail: robert_burke{at}brown.edu