This guide provides tips on everything needed to help family representatives get started and stay involved in the planning and implementation of state EMSC activities – including maintaining an effective working relationship with the state EMSC program manager, recruiting community partners, and educating legislators. (2008)
The goal of Partners in Policymaking is to educate participants to be active partners with those who make policy. The idea is to develop partnerships that are based on positive relationships and together change the future by influencing public policy today. Partners in Policymaking have many resources that could be of benefit including online classes, testimonials, videos, and more.
In 2011, the EMSC NRC produced its second series of podcasts called iAdvocate. These video podcasts focus on the public policy process and will equip individuals with information and strategies to effect legislative change at the federal, state, and local levels. While many of the examples used in this series refer to the federal policymaking process, most of the tools and tips are also applicable at the state and local levels.
Engaging Youth in Community Change: Outcomes and Lessons Learned from Sierra Health Foundation’s REACH Youth Program
This evaluation report documents the work of seven grantees who build local youth-adult coalitions. These coalitions provided meaningful engagement and leadership opportunities for youth and helped catalyze community and policy change strategies to enhance the overall level of support and opportunity for youth.
This form was developed by the American Academy of Pediatrics, American College of Surgeons, and EMS for Children to provide ready access to medical information to emergency care providers for children with special health care needs. It includes history, physician contact information, special physical needs, and medications. This is an ideal way to detail special equipment needs such as tracheostomy sizes or normal oxygen or ventilator settings. The form is available in English and Spanish.
In the wake of recent mass shootings and other safety problems in schools, the EIIC will attempt to catalog resources to aid in disaster planning for schools.
These emergency guidelines are meant to serve as basic "what-to-do-in-an-emergency" information for school staff without nursing or medical training when the school nurse is not available. It addresses the most common childhood illnesses and injuries, from allergic reactions to cuts, scrapes, and bruises and from diabetes to seizures. It also includes information on when to call EMS, safety planning, children with special health care needs, and infection control, as well as a list of recommended first aid supplies.
Dr. Seema Jilani provides practical tips on how to utilize social media, interviews with the media and the written perspective of parents and healthcare providers to advocate for the emergency care needs of children.
The webinar featured Dr. Padma Swamy who is a pediatrician who works at Baylor College of Medicine/Texas Children's Hospital. Dr. Swamy shared social media tips and tricks to assist FAN Representatives utilize social media platforms to promote the goals and mission of EMSC just in time for EMS Week and EMSC Day (May 19 - 25, 2019/ Wednesday, May 22). We also had an update from the FAN Activities Planning Team regarding exciting upcoming FAN activities.
Authors: Jessica A. Naiditch, MD; David H. Rothstein, MD, MS
Abstract: The field of pediatric surgery is principally involved in the surgical correction of congenital anomalies and the treatment of childhood cancers. From the time of Conrad Ramstedt in the early 1900s, who first operated on hypertrophic pyloric stenosis under uncertain anesthesia, to Robert Gross, who famously in 1938 was the first to operate on a patent ductus arteriosus while his surgeon-in-chief was away, to repair of esophageal atresias, anorectal malformations, and other congenital anomalies, surgeons operating on children have long attempted to convert nonsurvivable congenital and acquired anomalies into survivable ones. With time, and input from myriad collaborating specialists, we have succeeded. Isolated abdominal wall defects now carry a survival rate of greater than 95% and children born with esophageal atresia survive into adulthood at a rate higher than 90%. Although some pediatric solid organ malignancies continue to portend a poor outcome, patients with Wilms tumor and neuroblastoma, for example, now achieve overall 5-year survival rates of more than 90% and 70%, respectively. And it is precisely this success that has created a beautiful conundrum: who should take care of teenagers and young adults who have survived congenital anomalies and may require additional care but are physically and mentally adults?
Authors: Mark V. Mazziotti, M.D., FACS, FAAP and David H. Rothstein, M.D., FACS, FAAP
When pediatric surgical patients require long-term care into the adult years, many pediatric surgeons continue to care for them because of inadequately structured transition processes and the reluctance of adult colleagues to take on patients with complex pediatric surgical histories.
Authors: Jane Y. Zhao, MD; Priscilla P. L. Chiu, MD, PhD; Roshni Dasgupta, MD, MPH; et al.
Abstract: A child born with a congenital birth defect today has a much higher probability of reaching adulthood than in the past. Significant advances in neonatal resuscitation and surgical management have improved prognoses for diseases such as congenital diaphragmatic hernia, esophageal atresia, and imperforate anus. As these children grow into adolescence, new challenges emerge as results from long-term studies that show ongoing morbidity among adolescent and adult survivors demonstrate a clear need for structured and formal transitional care. Unanswered, however, are the questions of how and when the transition of care should take place. Few quantitative data exist about patients’ transition to adult care and their long-term follow-up. A growing body of literature suggests that there are long-term sequelae of many surgically corrected congenital anomalies, such as metaplastic changes in patients with esophageal atresia repair and chest wall deformities in patients undergoing thoracotomy in infancy. Survivors of congenital surgical disease are those who will benefit most from standardized approaches to transitional care. Our study seeks to quantify the need for transitional surgical care for pediatric patients with surgical anomalies in the coming decades.
Authors: David H. Rothstein MD, MS, Jessica J. Kandel MD
Authors: David H. Rothstein, Roshni Dasgupta
In 2002, the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians jointly published a seminal treatise on transitional care for the medically complex pediatric patient.In it they laid the framework for providing comprehensive and coordinated care for the estimated 500 000 children with complex medical conditions entering adulthood annually. Subsequent research has highlighted the challenges with providing this type of transition, finding a decade later that 60% of teenagers with special needs and their families did not receive any structured transitional care planning. The root causes of these failures are multiple, including lack of provider awareness or preparedness and a shortage of adult providers familiar with diseases such as cystic fibrosis, trisomy 21, and cerebral palsy. Patient and family reluctance in exchanging a protective, well-established, and nurturing pediatric environment for a more streamlined adult health care model may also contribute to this unease.
2017 Transitions in care from pediatric to adult general surgery: Evaluating an unmet need for patients with anorectal malformation and Hirschsprung disease
Authors: Sarah B. Cairo, Priscilla P.L. Chiu, Roshni Dasgupta, Karen A. Diefenbach, Allan M. Goldstein, Nicholas A. Hamilton, Andrea Lo, Michael D. Rollins, David H. Rothstein
Background: The provision of timely and comprehensive transition of care from pediatric to adult surgical providers for patients who have undergone childhood operations remains a challenge. Understanding the barriers to transition from a patient and family perspective may improve this process.
2018. Challenges in Transition of Care for Patients With Anorectal Malformations: A Systematic Review and Recommendations for Comprehensive Care.
Authors: Cairo SB, Gasior A Rollins MD, Rothstein DH
Background: Anorectal malformations are one of the most common congenital intestinal anomalies affecting newborns. Despite advances in neonatal care and surgical techniques, many patients with a history of anorectal malformations are affected by long-term challenges involving bowel and bladder dysfunction, sexual dysfunction, and psychosocial issues. These outcomes or challenges are additionally exacerbated by the lack of a structured transition of care from the pediatric to the adult setting.
2018. Challenges in Transition of Care for Pediatric Patients after Weight-Reduction Surgery: a Systematic Review and Recommendations for Comprehensive Care
Authors: Sarah B. Cairo, Indrajit Majumdar, Aurora Pryor, Alan Posner, Carroll M. Harmon, David H. Rothstein
Abstract: Obesity in pediatric patients is rising with nearly one third of children in the USA classified as overweight and up to 16–18% of the adolescent population obese with at least one comorbid condition. Consequently, bariatric procedures in this population have increased without consistent recommendations for follow-up and transition to adult providers. This review describes the known and potential long-term consequences of bariatric surgery in pediatric patients, reviews the current literature on transitions of care for adolescent patients with chronic illnesses. Additionally, this review summarizes recommendations from the literature for developing a standardized program for transitioning care for post-bariatric surgical patients and offers useful tools and guidelines for doing so.
2019. Challenges and Opportunities in Adolescent Gynecology Patients with Surgically-Treated Congenital and Acquired Anomalies: Transition of Care from Pediatric to Adult Surgery
Authors: S. Paige Hertweck MD, David H. Rothstein MD
Abstract: The transition from adolescence to young adulthood in patients with reproductive health care needs such as disorders of sexual development and congenital anomalies is a complex process that occurs over several years. The transition process for these patients is still poorly understood. The patients with disorders of sexual development and reproductive issues have specific and unique issues regarding timing of disclosure of diagnosis, genital examinations, gonadectomy, vaginal treatments, surgical procedures, hormone replacement therapy, use of long-term medication, and potential cancer screening. The purpose of this review is to briefly describe complex genital malformations and their associated anomalies with long-term concerns and then provide an overview of what has been published at this time regarding the transition of care to provide some guidance for providers who care for those patients.
2019. Transitional care for patients with surgical pediatric hepatobiliary disease: Choledochal cysts and biliary atresia
Authors: Aspelund G, Mahdi EM, Rothstein DH, Wakeman DS
Abstract: Choledochal cysts (CDCs) and biliary atresia (BA) are rare pediatric hepatobiliary anomalies that require surgical intervention due to increased risk of malignancy and liver failure, respectively. The underlying disease and operative procedures place patients at risk for long-term complications, which may continue to affect them into adulthood. Lack of a transitional care model in the health-care system potentiates the challenges they will face following aging out of their pediatric providers' care. We sought to elucidate the long-term complications and challenges patients with CDCs and BA face, review the current literature regarding transitioning care, and propose guidelines aiding adult providers in continued care and surveillance of these patients. A literature review was performed to assess short-term and long-term complications after surgery and the current standards for transitioning care in patients with a history of CDCs and BA. While transitional programs exist for patients with other gastrointestinal diseases, there are few that focus on CDCs or BA. Generally, authors encourage medical record transmission from pediatric to adult providers, ensuring accuracy of information and compliance with treatment plans. Patients with CDCs are at risk for developing biliary malignancies, cholangitis, and anastomotic strictures after resection. Patients with BA develop progressive liver failure, necessitating transplantation. There are no consensus guidelines regarding timing of follow up for these patients. Based on the best available evidence, we propose a schema for long-term surveillance.