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Pediatric advocacy

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https://www.readbyqxmd.com/read/29920452/the-second-annual-think-tank-on-prevention-of-sudden-cardiac-death-in-the-young-developing-a-rational-reliable-and-sustainable-national-health-care-resource-a-report-from-the-cardiac-safety-research-consortium
#1
REVIEW
Peter F Aziz, Stuart Berger, Peter Kowey, Mitchell Krucoff, Martha Lopez-Anderson, Eric Michelson, Silvana Molossi, Valarie Morrow, Ignacio Rodriguez, Tess Elizabeth Saarel, Colette Strnadova, Victoria Vetter, Theressa J Wright, Salim F Idriss
Sudden cardiac death in the young (SCDY) spans gender, race, ethnicity, and socioeconomic class. The loss of any pediatric patient is a matter of national and international public health concern, and focused efforts should be aimed at preventing these burdensome tragedies. Prepared by members of the Cardiac Safety Research Consortium, this White Paper summarizes and reports the dialogue at the second Think Tank related to the issues and the proposed solutions for the development of a national resource for screening and prevention of SCDY...
May 23, 2018: American Heart Journal
https://www.readbyqxmd.com/read/29895523/the-collaborative-role-of-north-american-departments-of-pediatrics-in-global-child-health
#2
REVIEW
Sophia P Gladding, Patrick T McGann, Andrea Summer, Christiana M Russ, Omolara T Uwemedimo, Martha Matamoros Aguilar, Rana Chakraborty, Molly Moore, Mary Lieh-Lai, Robert Opoka, Cynthia Howard, Chandy C John
Appeals for health equity call for departments of pediatrics to improve the health of all children including those from underserved communities in North America and around the world. Consequently, North American (NA) departments of pediatrics have a role in global child health (GCH) which focuses on providing health care to underserved children worldwide. In this review, we describe how NA departments of pediatrics can collaboratively engage in GCH education, clinical practice, research, and advocacy and summarize best practices, challenges, and next steps for engaging in GCH in each of these areas...
June 12, 2018: Pediatrics
https://www.readbyqxmd.com/read/29890870/economic-burden-work-and-school-productivity-in-individuals-with-tuberous-sclerosis-and-their-families
#3
Anne M Skalicky, Anne M Rentz, Zhimei Liu, Qayyim Said, Jo Anne Nakagawa, Michael D Frost, James W Wheless, David W Dunn
AIMS: Tuberous sclerosis complex (TSC) is a multi-organ autosomal-dominant, genetic disorder with incomplete penetrance. The multiple manifestations of TSC and impacts to numerous organ systems represent significant disease, health care and treatment burden. The economic and employment burden of the disease on individuals and their families is poorly understood. This study assessed the cost of illness and work and school productivity burden associated with TSC in a cross-sectional web-survey sample...
June 11, 2018: Journal of Medical Economics
https://www.readbyqxmd.com/read/29881796/advocacy-for-children-with-epilepsy-leveraging-the-wha-resolution-advocacy-task-force-commission-of-pediatrics-international-league-against-epilepsy
#4
REVIEW
Jo M Wilmshurst, Alla Guekht, Mary Secco, J Helen Cross, Emilio Perucca
In May 2015 the World Health Assembly (WHA) approved the Resolution on the Global Burden of Epilepsy. This report addresses how the Resolution can be leveraged to improve the care of children with epilepsy worldwide. Children with epilepsy have unique needs and face unique challenges from stigma at all levels of society. Children lack a voice to lobby for their own needs, including their right to have access to education. Effective leadership and governance should be enhanced through the support of stakeholders empowered to counsel, advise, and lobby for appropriate care...
June 2018: Epilepsia Open
https://www.readbyqxmd.com/read/29860857/palliative-care-services-in-pediatric-oncology
#5
Jessica L Spruit, Maryjo Prince-Paul
Pediatric cancer has experienced significant improvement in overall survival rates over the past several decades. Despite this progress, however, it remains the leading cause of death from disease beyond infancy in children. Among the children and adolescents that survive their cancer diagnosis, significant symptom burden and toxicities of therapy are often experienced. The evidence presented affords great insight in to the current empirical support for pediatric palliative care involvement, current utilization of palliative care services in the care of children with cancer and their families, and barriers that have been identified to date...
May 21, 2018: Annals of Palliative Medicine
https://www.readbyqxmd.com/read/29860493/new-business-models-to-accelerate-innovation-in-pediatric-oncology-therapeutics-a-review
#6
Sonya Das, Raphaël Rousseau, Peter C Adamson, Andrew W Lo
Importance: Few patient populations are as helpless and in need of advocacy as children with cancer. Pharmaceutical companies have historically faced significant financial disincentives to pursue pediatric oncology therapeutics, including low incidence, high costs of conducting pediatric trials, and a lack of funding for early-stage research. Observations: Review of published studies of pediatric oncology research and the cost of drug development, as well as clinical trials of pediatric oncology therapeutics at ClinicalTrials...
June 2, 2018: JAMA Oncology
https://www.readbyqxmd.com/read/29847326/training-pediatricians-to-address-health-disparities-an-innovative-residency-track-combining-global-health-with-community-pediatrics-and-advocacy
#7
Suzinne Pak-Gorstein, Maneesh Batra, Brian Johnston, H Mollie Grow, Abigail Grant, Richard Shugerman, Sylvia Lago, F Bruder Stapleton, Heather McPhillips
PROBLEM: Pediatric residency programs have been tasked to train a workforce of pediatricians with skills in community pediatrics and advocacy, and knowledge of global child health priorities. APPROACH: In 2009, the University of Washington (UW) Seattle Children's Hospital pediatric residency program developed the Resident Education in Advocacy and Child Health (REACH) program, a combined pathway for global health (GH) and community pediatric (CP) training. After participating in a combined curriculum, residents complete a community immersion either in Kisii, Kenya (GH) or rural Washington (CP)...
May 29, 2018: Academic Medicine: Journal of the Association of American Medical Colleges
https://www.readbyqxmd.com/read/29788443/pediatric-infectious-diseases-meets-the-future
#8
Janet R Gilsdorf, Paul Spearman, Janet A Englund, Tina Q Tan, Kristina A Bryant
Pediatric infectious diseases physicians are dedicated to the diagnosis, prevention, and management of infections in children. As such, we play large, and important, roles in the clinical care of children from birth to late adolescence and in infection prevention, antimicrobial stewardship, research pertaining to infections, public health, international and global health, and advocacy for children's health. Furthermore, we are critical to the education of future physicians (in general), pediatricians, and infectious diseases doctors...
May 19, 2018: Journal of the Pediatric Infectious Diseases Society
https://www.readbyqxmd.com/read/29733235/pharmacological-management-of-symptoms-in-children-with-life-limiting-conditions-at-the-end-of-life-in-the-asia-pacific
#9
Lee Ai Chong, Poh Heng Chong, Joyce Chee
BACKGROUND: The provision of pediatric palliative care in Asia Pacific varies between countries and availability of essential medications for symptoms at the end of life in this region is unclear. OBJECTIVE: To determine medications available and used in the management of six symptoms at the end of life among pediatric palliative care practitioners in Asia Pacific. To identify alternative pharmacological strategies for these six symptoms if the oral route was no longer possible and injections are refused...
May 7, 2018: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/29730731/the-global-face-of-eosinophilic-esophagitis-advocacy-and-research-groups
#10
REVIEW
Christine James, Amal Assa'ad
Although eosinophilic esophagitis (EoE) has been described in the literature for a substantial period, its recognition as a disease entity on the global stage is still relatively new. It has become a major diagnosis of consideration by medical providers when both adult and pediatric patients present with dysphagia, food impaction, and gastroesophageal reflux-like symptoms. In addition to the clinical work of specialists such as allergy-immunologists and gastroenterologists, the evolution of research organizations and advocacy groups focused on EoE have greatly assisted in bringing attention to, and raising awareness about, this disease...
May 5, 2018: Clinical Reviews in Allergy & Immunology
https://www.readbyqxmd.com/read/29718299/improving-quality-in-the-care-of-patients-with-inflammatory-bowel-diseases
#11
Matthew D Egberg, Ajay S Gulati, Ziad F Gellad, Gil Y Melmed, Michael D Kappelman
Efforts to improve healthcare quality were firmly established before the Institute of Medicine (IOM) historic 2000 and 2001 reports, To Err is Human Building a Safer Health System and Crossing the Quality Chasm: A New Health System for the 21st Century Despite the long-standing healthcare quality improvement (QI) efforts that date back to the turn of the 20th century, the IOM reports significantly advanced the awareness of healthcare quality deficits and the resulting risk to patients from those gaps in care...
April 27, 2018: Inflammatory Bowel Diseases
https://www.readbyqxmd.com/read/29716958/provider-perspectives-on-partnering-with-parents-of-hospitalized-children-to-improve-safety
#12
Rebecca E Rosenberg, Emily Williams, Neesha Ramchandani, Peri Rosenfeld, Beth Silber, Juliette Schlucter, Gail Geraghty, Susan Sullivan-Bolyai
BACKGROUND AND OBJECTIVES: There is increasing emphasis on the importance of patient and family engagement for improving patient safety. Our purpose in this study was to understand health care team perspectives on parent-provider safety partnerships for hospitalized US children to complement a parallel study of parent perspectives. METHODS: Our research team, including a family advisor, conducted semistructured interviews and focus groups of a purposive sample of 20 inpatient pediatric providers (nurses, patient care technicians, physicians) in an acute-care pediatric unit at a US urban tertiary hospital...
May 1, 2018: Hospital Pediatrics
https://www.readbyqxmd.com/read/29656703/the-ethics-of-concurrent-care-for-children-a-social-justice-perspective
#13
Kim Mooney-Doyle, Jessica Keim-Malpass, Lisa C Lindley
Recent estimates indicate that over 40,000 children die annually in the United States and a majority have life-limiting conditions. Children at end of life require extensive healthcare resources, including multiple hospital readmissions and emergency room visits. Yet, many children still suffer from symptoms at end of life-including fatigue, pain, dyspnea, and anxiety-with less than 10% of these children utilizing hospice care services. A critical barrier to pediatric hospice use was the original federal regulations associated with the hospice care that required a diagnosis of 6 months to live and the discontinuation of all curative treatments...
January 1, 2018: Nursing Ethics
https://www.readbyqxmd.com/read/29653255/promoting-father-involvement-for-child-and-family-health
#14
REVIEW
Brandon S Allport, Sara Johnson, Anushka Aqil, Alain B Labrique, Timothy Nelson, Angela Kc, Yorghos Carabas, Arik V Marcell
Paternal involvement in children's lives is associated with a variety of child outcomes, from improved cognition and mental health to reduced obesity rates and asthma exacerbations. Given this evidence, the American Academy of Pediatrics has promoted actions by pediatricians to engage fathers in pediatric care. Despite these recommendations, the mother-child dyad remains a frequent focus of care, rather than the mother-father-child triad. Furthermore, pediatric care is often leveraged to improve maternal health, such as screening for maternal depression, but paternal health is infrequently addressed even as men tend to exhibit riskier behaviors, poorer primary care utilization, and lower life expectancy...
April 10, 2018: Academic Pediatrics
https://www.readbyqxmd.com/read/29600747/the-effectiveness-of-a-hospital-based-school-liaison-program-a-comparative-study-of-parental-perception-of-school-supports-for-children-with-pediatric-cancer-and-neurofibromatosis-type-1
#15
Lisa Northman, Marybeth Morris, Caitlyn Loucas, Sarah Ross, Anna C Muriel, Dongjing Guo, Wendy B London, Peter Manley, Nicole J Ullrich
Childhood survivors of central nervous system (CNS) cancers (defined as cancers whose diagnosis or treatment affect the CNS) are at increased risk for educational related difficulties, as are children affected by neurofibromatosis type 1. This study evaluated the effectiveness of and satisfaction with a model of psychoeducation, consultation, and advocacy provided by a School Liaison Program (SLP) for families and schools of children with CNS-involved cancers compared with a control group of parents of children with a diagnosis of neurofibromatosis type 1 who did not receive school-based services...
March 1, 2018: Journal of Pediatric Oncology Nursing: Official Journal of the Association of Pediatric Oncology Nurses
https://www.readbyqxmd.com/read/29582520/pediatric-endocrine-society-survey-of-diabetes-practices-in-the-united-states-what-is-the-current-state
#16
I Guttmann-Bauman, P Thornton, S Adhikari, K Reifschneider, M A Wood, T Hamby, K Rubin
BACKGROUND: The Practice Management Committee (PMC) of the Pediatric Endocrine Society (PES) conducted a survey of its membership in February/March, 2016 to assess the current state of pediatric diabetes care delivery across multiple practice types in the United States. METHODS: The PES distributed an anonymous electronic survey (Survey Monkey) via email to its membership and requested that only one survey be completed for each practice. RESULTS: Ninety-three unique entries from the US were entered into analysis...
March 26, 2018: Pediatric Diabetes
https://www.readbyqxmd.com/read/29579005/a-pediatric-service-learning-program-in-physical-therapy-education
#17
Yu-Jen Hou, Wen-Yu Liu, Yang-Hua Lin, Hen-Yu Lien, Alice M K Wong, Chien-Min Chen
PURPOSE: The purpose of this report was to describe a pediatric service-learning program in entry-level physical therapy (PT) education in Taiwan. KEY POINTS: To meet the needs of the local community and provide preclinical service-learning experience to PT students with people with physical disability, a service-learning program of a 2-day camp for children with cerebral palsy (CP) was developed in 2012. To date, 356 entry-level PT students have participated in this program, serving 286 children and their families...
April 2018: Pediatric Physical Therapy
https://www.readbyqxmd.com/read/29560150/a-fuzzy-rule-based-expert-system-for-diagnosing-cystic-fibrosis
#18
Maryam Hassanzad, Azam Orooji, Ali Valinejadi, Aliakbar Velayati
Background: Finding a valid diagnosis is mostly a prolonged process. Current advances in the sector of artificial intelligence have led to the appearance of expert systems that enrich the experiences and capabilities of doctors for making decisions for their patients. Objective: The objective of this research was developing a fuzzy expert system for diagnosing Cystic Fibrosis (CF). Methods: Defining the risk factors and then, designing the fuzzy expert system for diagnosis of CF were carried out in this cross-sectional study...
December 2017: Electronic Physician
https://www.readbyqxmd.com/read/29548493/quantifying-delays-and-self-identified-barriers-to-timely-access-to-pediatric-surgery-at-mbarara-regional-referral-hospital-uganda
#19
Mercedes Pilkington, Martin Situma, Andrea Winthrop, Dan Poenaru
PURPOSE: Favorable surgical outcomes depend on timely access to care. This study quantifies these delays and explores caregiver barriers to access in a Ugandan facility. METHODS: An interviewer-facilitated survey was administered over 8months to consecutive pediatric surgical families at Mbarara Regional Referral Hospital (MRRH). Delays were classified using the Three Delays Model: care-seeking, arrival at health facility, and from surgical consultation to surgery...
May 2018: Journal of Pediatric Surgery
https://www.readbyqxmd.com/read/29547642/-before-xpert-i-only-had-my-expertise-a-qualitative-study-on-the-utilization-and-effects-of-xpert-technology-among-pediatricians-in-4-indian-cities
#20
Andrew McDowell, Neeraj Raizada, Sunil D Khaparde, Raghuram Rao, Sanjay Sarin, Aakshi Kalra, Virender Singh Salhotra, Sreenivas Achuthan Nair, Catharina Boehme, Claudia M Denkinger
BACKGROUND: Diagnosing tuberculosis (TB) in children presents considerable challenges. Upfront testing on Xpert® MTB/RIF ('Xpert')-a rapid molecular assay with high sensitivity and specificity-for pediatric presumptive TB patients, as recommended by India's Revised National Tuberculosis Control Program (RNTCP), can pave the way for early TB diagnosis. As part of an ongoing project implemented by Foundation for Innovative New Diagnostics (FIND) dedicated to providing upfront free-of-cost (FOC) Xpert testing to children seeking care in the public and private sectors, a qualitative assessment was designed to understand how national guidelines on TB diagnosis and Xpert technology have been integrated into the pediatric TB care practices of different health providers...
2018: PloS One
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