Pediatric health advocacy

INTRODUCTION: Congenital heart disease (CHD) has an incidence of 0.8% to 1.2% worldwide, making it the most common birth defect. Researchers have compared high-volume to low-volume hospitals and found significant hospital-level variation in major complications, health resource utilization, and mortality after CHD surgery. In addition, researchers found critical CHD patients at low-volume/non-teaching facilities to be associated with higher odds of inpatient mortality when compared to CHD patients at high-volume/teaching hospitals (odds ratio 1...

CONTEXT: Pediatric psychologists possess unique expertise to positively impact the care provided to children with serious illness and their families. Despite increasing recognition regarding the value of psychology in palliative care, psychologists are not yet routinely integrated into pediatric palliative care (PPC) teams. OBJECTIVES: This special paper seeks to demonstrate distinctive contributions psychologists can offer to PPC teams, patients, and families, as well as highlight how psychologists enhance the work of their interdisciplinary PPC colleagues...

BACKGROUND: In 2017, the German Academy for Rare Neurological Diseases (Deutsche Akademie für Seltene Neurologische Erkrankungen; DASNE) was founded to pave the way for an optimized personalized management of patients with rare neurological diseases (RND) in all age groups. Since then a dynamic national network for rare neurological disorders has been established comprising renowned experts in neurology, pediatric neurology, (neuro-) genetics and neuroradiology. DASNE has successfully implemented case presentations and multidisciplinary discussions both at yearly symposia and monthly virtual case conferences, as well as further educational activities covering a broad spectrum of interdisciplinary expertise associated with RND...

Climate change poses a serious threat to the health and well-being of pregnant women and their developing fetuses. Certain populations are at greater risk of adverse outcomes from air pollution, a contributing factor to climate change. In addition, heightened exposure to extreme heat, a consequence of climate change, exacerbates the existing health care inequities in the United States. Nurses, midwives, and other health care clinicians are uniquely positioned to reduce the harmful effects of climate change by educating pregnant women and their families and advocating for systems and policies that can decelerate climate change...

Spinal fusion surgery is one of the most common major surgical procedures in youth. Adolescent idiopathic scoliosis (AIS) is the most frequent reason for corrective spinal fusion. AIS (∼25%-47% of cases) and spinal fusion surgeries are associated with pain, including the development of new onset chronic pain for up to 15% of youth. This research used photovoice approaches to explore the journeys of youth from before, during, and after spinal fusion surgery, to demonstrate their experiences both of and beyond pain...

Pediatric liver transplant (LT) recipients navigate a lifelong journey that includes constant monitoring and challenges. Research priorities and questions in LT have traditionally been provider driven. This project was a novel partnership between a learning health system dedicated to pediatric LT (Starzl Network for Excellence in Pediatric Transplantation) and a parent-led advocacy group (Transplant Families) that aimed to prepare families and providers for collaborative patient-centered outcomes research (PCOR)...

BACKGROUND: This article gives the pediatric anesthesia perspective from Cameroon, Nigeria, Ghana, Liberia, and Gambia, five out of six countries in Anglophone West Africa. Over 40% of the population of most of these countries are younger than 14 years and there is an increasing need for paediatric anesthesia services. FINDINGS: Workforce density ranges from 0.08 to 0.58 physician anesthesia providers per 100,000 population. There are only 13 trained pediatric anesthetists; ratios range from 0 to 0...

BACKGROUND: Paediatric obesity disproportionately impacts individuals from minoritized racial and ethnic backgrounds. Recent guidelines support use of anti-obesity pharmacotherapy for adolescents with obesity, but the potential impact on disparities in obesity prevalence has not been evaluated. OBJECTIVES: To model changes in obesity prevalence with increasing utilization of anti-obesity pharmacotherapy among adolescents. METHODS: Data representative of American adolescents ages 12-17 years were obtained from the National Health and Nutrition Examination Survey, cycles 2011 through pre-pandemic 2020...

Adolescent medicine (AM) subspecialists provide primary, subspecialty, and consultative care to adolescents and young adults (AYAs). Given insufficient numbers of AM subspecialists to care for all AYAs, the workforce supports AYAs health care capacity through education, research, advocacy, and the development of policies and programs sensitive to their unique needs. A modeling project funded by the American Board of Pediatrics Foundation was developed to forecast the pediatric subspecialty workforce in the United States from 2020 to 2040 on the basis of current trends in each subspecialty...

Developmental-behavioral pediatrics (DBP) subspecialists care for children with complex neurodevelopmental and behavioral health conditions; additional roles include education and training, advocacy, and research. In 2023, there were 1.0 DBP subspecialists per 100 000 US children aged 0 to 17 years (range 0.0-3.8), with wide variability in DBP subspecialist distribution. Given the prevalence of DB conditions, the current workforce is markedly inadequate to meet the needs of patients and families. The American Board of Pediatrics Foundation led a modeling project to forecast the US pediatric subspecialty workforce from 2020 to 2040 using current trends in each subspecialty...

The advent of social media has changed numerous aspects of modern life, with users developing and maintaining personal and professional relationships, following and sharing breaking news and importantly, searching for and disseminating health information and medical research. In the present paper, we reviewed available literature to outline the potential uses, pitfalls and impacts of social media for providers, scientists and institutions involved in digestive health in the domains of patient care, research and professional development...

INTRODUCTION: Patient engagement has historically referenced engagement in one's healthcare, with more recent definitions expanding patient engagement to encompass patient advocacy work in Learning Health Networks (LHNs). Efforts to conceptualize and define what patient engagement means-and what successful patient engagement means-are, however, lacking and a barrier to meaningful and sustainable patient engagement via patient advisory councils (PACs) across LHNs. METHODS: Several co-authors (Madeleine Huwe, Becky Woolf, Jennie David) are former ImproveCareNow (ICN) PAC members, and we integrate a narrative review of the extant literature and a case study of our lived experiences as former ICN PAC members...

BACKGROUND: Vaccine hesitancy is a growing public health concern and has been classified as a major threat to global health by the World Health Organization. While there has been extensive research on the attitudes of vaccine-hesitant individuals, little is known about provaccination advocates. Our objectives were to describe the characteristics, attitudes, activities and motivations of provaccination advocates. METHODS: An internet survey was conducted in July-November 2019...

Children are facing many threats to their health today that require system change at a sweeping level to have real-world impact. Pediatricians are positioned as natural leaders to advocate for these critical community and policy changes. Academic medical center (AMC) leaders recognize the importance of this advocacy and clear steps can be taken to improve the structure to support pediatricians in their advocacy careers through faculty development and promotion, including standardized scholarly measurement of the outcomes...

Children, particularly adolescents, are dying from firearm-related injuries. Screening for firearms, early recognition of firearm-related concerns, appropriate referrals, and follow-up are crucial to the safety of our patients and their families. Clinicians are strongly encouraged to address firearm-related violence during clinical encounters. Risk reduction, advocacy, and policy implementation are key in mitigating the long-term negative sequelae of firearm violence in youth. The epidemiology of firearm-related death, mass shootings, school firearm violence, adolescent health, prevention, injury patterns, postinjury care, policy, and resources are all discussed in this article...

Introduction Immigrants comprised a significant portion of the total population in the United States (US), and a considerable number of children in the US live with at least one immigrant parent, which has continued to increase over the past decades. However, healthcare providers (HPs) in the US report lack of comfort in interacting with immigrant and refugee populations. Methods The authors, in partnership with the Midwest Consortium of Global Health Educators, developed an innovative, interactive ethics curriculum within the Immigrant Partnership Advocacy and Curricular Kit (I-PACK)...

OBJECTIVES: To explore the benefits and challenges of accessing physicians' notes during pediatric hospitalization across parents of different health literacy levels. METHODS: For this secondary analysis, we used semi-structured interviews conducted with 28 parents on their impressions of having access to their child's care team notes on a bedside table. Three researchers used thematic analysis to develop a codebook, coded interview data, and identified themes. Parent interviews and respective themes were then dichotomized into proficient or limited health literacy groups and compared...

Recent years have elucidated that trafficking in the pediatric population constitutes a broader pattern of child maltreatment. Given the inconsistent engagement with the medical system that trafficked youth can experience, there is growing advocacy promoting streamlined provision of specialized services. One innovative example includes the Adolescent Protection Collaborative (APC) launched at the Children's Hospital of Philadelphia in 2021. The APC was conceptualized to serve the overlapping populations of youth impacted by sex trafficking victimization and child welfare involvement...

BACKGROUND: During November 2019-October 2021, a pediatric influenza vaccination demonstration project was conducted in four sub-counties in Kenya. The demonstration piloted two different delivery strategies: year-round vaccination and a four-month vaccination campaign. Our objective was to compare the costs of both delivery strategies. METHODS: Cost data were collected using standardized questionnaires and extracted from government and project accounting records...

OBJECTIVES: The objective of this article is to describe the design and implementation of a multimodal, student-driven, sex- and gender-based women's health (SGBWH) elective with a curricular focus on patient and legislative advocacy. In this single arm, pre/post design, interventional study, we detail and evaluate the use of social media, newsletters, and round-table discussions in conjunction with a traditional lecture-based educational format to engage medical students in a virtual learning environment...