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Pediatric health advocacy

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https://www.readbyqxmd.com/read/28717727/childhood-cancer-mortality-in-india-direct-estimates-from-a-nationally-representative-survey-of-childhood-deaths
#1
Sumit Gupta, Shaun K Morris, Wilson Suraweera, Lukasz Aleksandrowicz, Rajesh Dikshit, Prabhat Jha
PURPOSE: Although most children with cancer live in low- and middle-income countries, measurements of childhood cancer burden in such countries have been restricted to incidence rates from a few subnational cancer registries and mortality rates from vital statistics. We aimed to provide alternative burden estimates by using nationally representative longitudinal survey-derived mortality rates. METHODS: We examined cancer deaths in childhood (1 month to 14 years of age) in the Million Death Study, a cohort of > 27,000 pediatric deaths in India on the basis of enhanced verbal autopsies...
December 2016: Journal of Global Oncology
https://www.readbyqxmd.com/read/28688939/mapping-geospatial-gaps-in-early-identification-of-children-with-autism-spectrum-disorder
#2
Pamela B DeGuzman, Paige Altrui, Marcus Allen, Cornelia Ramsey Deagle, Jessica Keim-Malpass
Despite the known developmental benefits of early intervention for autism spectrum disorder (ASD), diagnosis before age 5 years is often not achieved. Research suggests that lack of health insurance and living in rural areas and areas of severe provider shortages contribute significantly to these delays. The purpose of this project was to conduct a geospatial evaluation of potential gaps in early ASD diagnosis of uninsured children in Virginia. A secondary purpose was to show the use of geospatial analysis by pediatric nurse practitioners for policy advocacy...
July 6, 2017: Journal of Pediatric Health Care
https://www.readbyqxmd.com/read/28666472/policy-entrepreneurship-in-the-reform-of-pediatric-dentistry
#3
Burton L Edelstein, William R Maas
In a recently published IJHPR article, Cohen and Horev ask whether an individual who holds rightful governmental power is able to effectively "challenge the equilibrium" in ways that might "clash with the goals" of an influential group". This question is raised within the context of a shift in governmental policy that imposed the potential for cost management by HMOs acting as financial intermediaries for pediatric dental care in an effort to provide Israeli children better access to affordable dental care...
June 30, 2017: Israel Journal of Health Policy Research
https://www.readbyqxmd.com/read/28632945/developing-multidisciplinary-clinics-for-neuromuscular-care-and-research
#4
REVIEW
Sabrina Paganoni, Katie Nicholson, Fawn Leigh, Kathryn Swoboda, David Chad, Kristin Drake, Kellen Haley, Merit Cudkowicz, James D Berry
Multidisciplinary care is considered the standard-of-care for both adult and pediatric neuromuscular disorders and has been associated with improved quality of life, resource utilization, and health outcomes. Multidisciplinary care is delivered in multidisciplinary clinics that coordinate care across multiple specialties reducing travel burden and streamlining care. In addition, multidisciplinary care setting facilitates the integration of clinical research, patient advocacy, and care innovation (e.g., TeleHealth)...
June 20, 2017: Muscle & Nerve
https://www.readbyqxmd.com/read/28574671/interdisciplinary-care-in-disorders-differences-of-sex-development-dsd-the-psychosocial-component-of-the-dsd-translational-research-network
#5
David E Sandberg, Melissa Gardner, Nina Callens, Tom Mazur
Scientific discovery and clinical management strategies for Disorders/Differences of Sex Development (DSD) have advanced in recent years. The 2006 Consensus Statement on Management of Intersex Disorders stated that a mental health component to care is integral to promote positive adaptation, yet the parameters of this element have not been described. The objective of this paper is threefold: to describe the psychosocial screening protocol adopted by the clinical centers of the DSD-Translational Research Network; to summarize psychosocial data collected at 1 of the 10 network sites; and to suggest how systematic behavioral health screenings can be employed to tailor care in DSD that results in better health and quality of life outcomes...
June 2017: American Journal of Medical Genetics. Part C, Seminars in Medical Genetics
https://www.readbyqxmd.com/read/28557237/disorders-of-sex-development-dsd-clinical-service-delivery-in-the-united-states
#6
Aimee M Rolston, Melissa Gardner, Kathleen van Leeuwen, Lauren Mohnach, Catherine Keegan, Emmanuèle Délot, Eric Vilain, David E Sandberg
Following the principles of care recommended in the 2006 Consensus Statement on Disorders of Sex Development (DSD), along with input from representatives of peer support and advocacy groups, this study surveyed DSD clinical management practices at healthcare facilities in the United States. DSD are congenital conditions in which development of chromosomal, gonadal, or anatomic sex is atypical. Facilities providing care for patients with DSD were targeted for participation. Specialty providers completed a survey with questions in six broad categories: Institution Information, Nomenclature and Care Guidelines, Interdisciplinary Services, Staff and Community Education, DSD Management, and Research...
June 2017: American Journal of Medical Genetics. Part C, Seminars in Medical Genetics
https://www.readbyqxmd.com/read/28477319/transition-of-care-in-congenital-heart-disease-ensuring-the-proper-handoff
#7
REVIEW
Angela Lee, Barbara Bailey, Geraldine Cullen-Dean, Sandra Aiello, Joanne Morin, Erwin Oechslin
BACKGROUND: With great advances in medical and surgical care, most congenital heart disease patients are living in to adulthood and require lifelong surveillance and expert care for adult onset complications. Care lapse and lack of successful transfer from pediatric to adult care put young adults at risk for increased morbidity and premature death. Hence, transition and transfer from pediatric to adult care is a crucial and critical process to provide access to specialized care and lifelong surveillance...
June 2017: Current Cardiology Reports
https://www.readbyqxmd.com/read/28331102/clinical-features-of-women-with-turner-syndrome-experiencing-transition-period-in-japan
#8
Satsuki Nishigaki, Takashi Hamazaki, Akitoshi Tsuruhara, Toshiko Yoshida, Takuji Imamura, Hiroshi Inada, Keinosuke Fujita, Haruo Shintaku
Turner syndrome results from the entire or partial loss of the second X chromosome, and is associated with a number of medical problems. Affected women require long-term medical follow-up. This study investigated the status of medical follow-up focusing on the transition for young adult women with Turner syndrome (TS). The clinical profiles of 63 women with TS over the age of 16 were retrospectively examined. Thirty-three women are continuously followed by pediatric endocrinologists at our pediatric division...
March 22, 2017: Endocrine Journal
https://www.readbyqxmd.com/read/28303273/practice-patterns-of-speech-language-pathologists-in-pediatric-vocal-health
#9
Naomi A Hartley, Maia Braden, Susan L Thibeault
Purpose: The purpose of this study was to investigate current practices of speech-language pathologists (SLPs) in the management of pediatric vocal health, with specific analysis of the influence of clinical specialty and workplace setting on management approaches. Method: American Speech-Language-Hearing Association-certified clinicians providing services within the United States (1%-100% voice caseload) completed an anonymous online survey detailing clinician demographics; employment location and service delivery models; approaches to continuing professional development; and specifics of case management, including assessment, treatment, and discharge procedures...
May 17, 2017: American Journal of Speech-language Pathology
https://www.readbyqxmd.com/read/28178913/training-us-health-care-professionals-on-human-trafficking-where-do-we-go-from-here
#10
Clydette Powell, Kirsten Dickins, Hanni Stoklosa
Some 21 million adults and children are labor-trafficked or sex-trafficked through force, fraud, or coercion. In recognition of the interface between trafficking victims and the healthcare setting, over the last 10 years there has been a notable increase in training of health care professionals (HCPs) on human trafficking (HT) and its health implications. Many organizations have developed curricula and offered training in various clinical settings. However, methods and content of this education on trafficking vary widely, and there is little evaluation of the impact of the training...
2017: Medical Education Online
https://www.readbyqxmd.com/read/28125277/the-african-pediatric-fellowship-training-program-in-pediatric-pulmonology-a-model-for-growing-african-capacity-in-child-lung-health
#11
Heather J Zar, Aneesa Vanker, Diane Gray, Marco Zampoli
Childhood respiratory diseases are the major cause of mortality and morbidity in African children. However, there is limited expertise in pediatric pulmonology in Africa. The African Pediatric Fellowship Program (APFP) was developed in the Department of Paediatrics and Child Health at the University of Cape Town in partnership with African academic institutions beyond South Africa to promote training of African child health professionals and to build capacity. From 2008 to 2016, 11 fellows have completed APFP training in pediatric pulmonology...
April 2017: Annals of the American Thoracic Society
https://www.readbyqxmd.com/read/28068134/psychologists-in-patient-centered-medical-homes-pcmhs-roles-evidence-opportunities-and-challenges
#12
Anne E Kazak, Justin M Nash, Kimberly Hiroto, Nadine J Kaslow
The patient-centered medical home (PCMH) is an increasingly common model of health care delivery with many exciting opportunities for psychologists. The PCMH reflects a philosophy and model of care that is highly consistent with psychological science and practice. It strives to provide patient-centered, comprehensive, team-based, coordinated, accessible, and quality and safety-oriented health care delivery to individuals and families. Moreoever, in keeping with changes in the health care system more broadly, the PCMH model prioritizes the integration of behavioral and physical health care, and this emphasis lays the foundation for active and full engagement of psychologists in this context...
January 2017: American Psychologist
https://www.readbyqxmd.com/read/28033485/acculturation-needs-of-pediatric-international-medical-graduates-a-qualitative-study
#13
Amanda D Osta, Michelle M Barnes, Regina Pessagno, Alan Schwartz, Laura E Hirshfield
Phenomenon: International medical graduates (IMGs) play a key role in host countries' health systems but face unique challenges, which makes effective, tailored support for IMGs essential. Prior literature describing the acculturation needs of IMGs focused primarily on communication content and style. We conducted a qualitative study to explore acculturation that might be specific to IMG residents who care for children. APPROACH: In a study conducted from November 2011 to April 2012, we performed four 90-minute semistructured focus groups with 26 pediatric IMG residents from 12 countries...
December 29, 2016: Teaching and Learning in Medicine
https://www.readbyqxmd.com/read/27994112/safe-sleep-guideline-adherence-in-nationwide-marketing-of-infant-cribs-and-products
#14
Matthew Kreth, Tammy Shikany, Claire Lenker, R Bradley Troxler
BACKGROUND: Sudden infant death syndrome and sleep-related sudden unexpected infant death remain leading causes of infant mortality in the United States despite 4 safe sleep guideline restatements over the previous 24 years. Advertising and retail crib displays often promote infant sleep environments that are counter to the most recent American Academy of Pediatrics (AAP) guidelines. METHODS: Magazine advertisements featuring sleep in parenting magazines from 1992, 2010, and 2015 were reviewed for adherence...
January 2017: Pediatrics
https://www.readbyqxmd.com/read/27940891/researchers-regulators-and-sponsors-views-on-pediatric-clinical-trials-a-multinational-study
#15
MULTICENTER STUDY
Pathma D Joseph, Jonathan C Craig, Allison Tong, Patrina H Y Caldwell
BACKGROUND AND OBJECTIVE: The last decade has seen dramatic changes in the regulatory landscape to support more trials involving children, but child-specific challenges and inequitable conduct across income regions persist. The goal of this study was to describe the attitudes and opinions of stakeholders toward trials in children, to inform additional strategies to promote more high-quality, relevant pediatric trials across the globe. METHODS: Key informant semi-structured interviews were conducted with stakeholders (researchers, regulators, and sponsors) who were purposively sampled from low- to middle-income countries and high-income countries...
October 2016: Pediatrics
https://www.readbyqxmd.com/read/27925785/accelerating-scientific-advancement-for-pediatric-rare-lung-disease-research-report-from-a-national-institutes-of-health-nhlbi-workshop-september-3-and-4-2015
#16
Lisa R Young, Bruce C Trapnell, Kenneth D Mandl, Daniel T Swarr, Jennifer A Wambach, Carol J Blaisdell
Pediatric rare lung disease (PRLD) is a term that refers to a heterogeneous group of rare disorders in children. In recent years, this field has experienced significant progress marked by scientific discoveries, multicenter and interdisciplinary collaborations, and efforts of patient advocates. Although genetic mechanisms underlie many PRLDs, pathogenesis remains uncertain for many of these disorders. Furthermore, epidemiology and natural history are insufficiently defined, and therapies are limited. To develop strategies to accelerate scientific advancement for PRLD research, the NHLBI of the National Institutes of Health convened a strategic planning workshop on September 3 and 4, 2015...
December 2016: Annals of the American Thoracic Society
https://www.readbyqxmd.com/read/27879297/addressing-the-mental-health-needs-of-latino-children-in-immigrant-families
#17
Tania Maria Caballero, Lisa Ross DeCamp, Rheanna E Platt, Harita Shah, Sara B Johnson, Erica M S Sibinga, Sarah Polk
Latino children in the United States, whether immigrants themselves or children in immigrant families, are at high risk for mental health disorders stemming from poverty, exposure to trauma, assimilation stressors, and discrimination. The timely identification and treatment of mental health disorders in Latino children are compromised by limited healthcare access and quality as well as the lack of routine mental health screening in pediatric primary care. Here we review Spanish-language validity and implementation studies of Bright Futures previsit mental health screening tools and models of care...
June 2017: Clinical Pediatrics
https://www.readbyqxmd.com/read/27812509/type-1-diabetes-addressing-the-transition-from-pediatric-to-adult-oriented-health-care
#18
Maureen Monaghan, Katherine Baumann
Adolescents and young adults with type 1 diabetes are at risk for poor health outcomes, including poor glycemic control, acute and chronic complications, and emergency department admissions. During this developmental period, adolescent and young adult patients also experience significant changes in living situation, education, and/or health care delivery, including transferring from pediatric to adult health care. In recent years, professional and advocacy organizations have proposed expert guidelines to improve the process of preparation for and transition to adult-oriented health care...
2016: Research and Reports in Endocrine Disorders
https://www.readbyqxmd.com/read/27769758/enablers-and-barriers-of-men-with-duchenne-muscular-dystrophy-transitioning-from-an-adult-clinic-within-a-pediatric-hospital
#19
Sally Lindsay, Laura McAdam, Tania Mahendiran
BACKGROUND: Young men with Duchenne muscular dystrophy (DMD) live into adulthood and need specialized care. However, services for adults are fragmented. We know little about young men's experiences, their parents, and clinicians who support them as they transition to adult care. OBJECTIVE: To explore the enablers and barriers of clinicians, young men, and parents as they transition from an adult DMD clinic within a pediatric hospital to an adult health facility...
January 2017: Disability and Health Journal
https://www.readbyqxmd.com/read/27727442/difficult-relationships-between-parents-and-physicians-of-children-with-cancer-a-qualitative-study-of-parent-and-physician-perspectives
#20
Jennifer W Mack, Maya Ilowite, Sarah Taddei
BACKGROUND: Previous work on difficult relationships between patients and physicians has largely focused on the adult primary care setting and has typically held patients responsible for challenges. Little is known about experiences in pediatrics and more serious illness; therefore, we examined difficult relationships between parents and physicians of children with cancer. METHODS: This was a cross-sectional, semistructured interview study of parents and physicians of children with cancer at the Dana-Farber Cancer Institute and Boston Children's Hospital (Boston, Mass) in longitudinal primary oncology relationships in which the parent, physician, or both considered the relationship difficult...
February 15, 2017: Cancer
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