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Pediatric advocacy

Moira Szilagyi
No abstract text is available yet for this article.
November 2016: Academic Pediatrics
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...
October 11, 2016: Disability and Health Journal
Michael J Alfonzo, Carl R Baum
Magnets are inherently attractive to young children, but present a risk when ingested. If consumed alone, small, smooth magnetic foreign bodies are likely to pass without significant event; however, ingestion of multiple magnets may have catastrophic consequences, including bowel perforation, obstruction, peritonitis, and death. Increasing reports of morbidity and mortality in recent years from the US National Electronic Injury Surveillance System has led to numerous safety statements from the American Academy of Pediatrics and the Centers for Disease Control and Prevention, as well as several product recalls from the Consumer Product Safety Commission...
October 2016: Pediatric Emergency Care
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...
October 11, 2016: Cancer
Thomas J Weber, Eileen K Sawyer, Scott Moseley, Tatjana Odrljin, Priya S Kishnani
BACKGROUND: Hypophosphatasia (HPP) is a rare metabolic bone disease caused by loss-of-function mutation(s) in the tissue-nonspecific alkaline (TNSALP) phosphatase gene, which manifests as rickets and/or osteomalacia with systemic complications and affects patients of all ages. The burden of disease is poorly characterized in adult patients. AIMS: We assessed patient-reported burden of disease using two surveys reasonably specific for HPP symptomatology, the Hypophosphatasia Impact Patient Survey (HIPS) and the Hypophosphatasia Outcomes Study Telephone interview (HOST)...
October 2016: Metabolism: Clinical and Experimental
Gema Ariceta, Juan Antonio Camacho, Matilde Fernández-Obispo, Aurora Fernández-Polo, Josep Gámez, Judit García-Villoria, Enrique Lara, Pere Leyes, Nieves Martín-Begué, Manel Perelló, Guillem Pintos-Morell, Roser Torra, J Vicens Torregrosa, Sandra Torres-Sierra, Anna Vila-Santandreu, Ana Güell
INTRODUCTION: Improved outcome and longer life-expectancy in patients with cystinosis, and disease complexity itself, justify planning a guided-transition of affected patients from Pediatrics to adult medicine. The aims of the process are to guarantee the continuum of care and patient empowerment, moving from guardian-care to self-care. METHODS: review of articles, expert opinion and anonymous surveys of patients, relatives and patient advocacy groups. RESULTS: elaboration a new document to support and coordinate the transition of patients with cystinosis providing specific proposals in a variety of medical fields, and adherence promotion...
August 29, 2016: Nefrología: Publicación Oficial de la Sociedad Española Nefrologia
Katherine A Rafferty, Shelbie L Sullivan
Caring for a child with a chronic condition has received considerable attention in the pediatric health literature. Today, approximately 1 out of 5 North American children are diagnosed with a chronic condition that requires parents to become caregivers and advocates. Although advocacy is regarded as a significant aspect to parental caregiving, more research is needed to better define this oversimplified and misrepresented concept in clinical practice and research. Subsequently, we interviewed 35 parents of children diagnosed with complex chronic conditions...
September 2, 2016: Health Communication
Rebecca M Roberts, Lauri A Hicks, Monina Bartoces
OBJECTIVES: Antibiotic prescribing has become increasingly viewed as an issue related to patient safety and quality of care. The objective of this study was to better understand the differences between health plan reporting and the geographic variation seen in quality measures related to antibiotic use. STUDY DESIGN: We focused on 3 measures from the Healthcare Effectiveness Data and Information Set (HEDIS) related to antibiotic prescribing and testing to guide antibiotic prescribing...
August 2016: American Journal of Managed Care
Stephen Oluwatosin Adebola, Segun Ayodeji Ogunkeyede, Francis Ameh Obebe, Oladunjoye David Olaniyan, Olumakinde Banjo Fawole, Abdulwasiu Salman
OBJECTIVES: The study assessed the prevalence of complications associated with traditional uvulectomy and identified factors associated with favorable outcome after management in a pediatric population in North-Western Nigeria. STUDY DESIGN AND SETTING: This cross-sectional descriptive study was carried out at the accident and emergency section as well as at the otolaryngology out-patient clinic of the Federal Medical Centre, Birnin-Kebbi, Nigeria. METHODS: Patients with traditional uvulectomy complications were recruited on consecutive basis and sample size was dependent on the patients seen over the study period...
September 2016: International Journal of Pediatric Otorhinolaryngology
Sharon L Smith, Michelle A Price, Timothy C Fabian, Gregory J Jurkovich, Basil A Pruitt, Ronald M Stewart, Donald H Jenkins
Despite being the leading cause of death in the United States for individuals 46 years and younger and the primary cause of death among military service members, trauma care research has been underfunded for the last 50 years. Sustained federal funding for a coordinated national trauma clinical research program is required to advance the science of caring for the injured. The Department of Defense is committed to funding studies with military relevance; therefore, it cannot fund pediatric or geriatric trauma clinical trials...
September 2016: Shock
Colleen Psarros, Sarah Love
Newborn hearing screening has led to the early diagnosis of hearing loss in neonates and early device fitting is common, based primarily on electrophysiologic and radiologic information, with some supplementary behavioral measures. Such early fitting of hearing devices, in particular cochlear implants (CIs), has been beneficial to the majority of children implanted under the age of 12 months who meet the cochlear implant candidacy criteria. Comorbidities are common in children with hearing loss, although they may not be evident in neonates and may not emerge until later in infants...
August 2016: Seminars in Hearing
Sharon D Dell, Margaret W Leigh, Jane S Lucas, Thomas W Ferkol, Michael R Knowles, Adrianne Alpern, Laura Behan, Anjana M Morris, Claire Hogg, Audrey DunnGalvin, Alexandra L Quittner
RATIONALE: Primary ciliary dyskinesia (PCD) is a rare disease. There are no available data on disease-specific pediatric patient-reported outcomes. OBJECTIVES: Our objective was to create developmentally appropriate, health-related quality-of-life questionnaires (QOL-PCD) for children (6-12 yr) and adolescents (13-17 yr) with PCD and a parent proxy measure. METHODS: The QOL-PCD was developed using a cross-cultural protocol-driven approach satisfying both North American and European drug regulatory agency guidelines...
October 2016: Annals of the American Thoracic Society
Elizabeth A Gage-Bouchard, Susan LaValley, Michelle Mollica, Lynda Kwon Beaupin
BACKGROUND: Americans are increasingly using social media (such as Facebook, YouTube, and Twitter) for health-related communication. Much of the previous research on social media and health communication has focused on Facebook groups related to a specific disease or Facebook pages related to an advocacy organization. Less is known about how people communicate about cancer on personal Facebook pages. OBJECTIVE: In this study, we expand upon previous research by examining how cancer caregivers use personal Facebook pages for cancer-related communication...
July 20, 2016: Cancer Nursing
Richard J Shaw, Maryland Pao, Jennifer E Holland, David R DeMaso
BACKGROUND: Given the heightened focus on the implementation of integrated care and population health management strategies, there is a critical need for an analysis of pediatric psychosomatic medicine (PPM) programs. OBJECTIVE: The goal was to survey current practice patterns in academic PPM programs in North America regarding their service composition, clinical consultation services, changes in service demand, funding, and major challenges so as to inform and support advocacy efforts on behalf of children in their need for responsive and effective PPM services...
May 21, 2016: Psychosomatics
Norma J MacIntyre, Neha Dewan
STUDY DESIGN: Literature Review. INTRODUCTION: For optimal Distal Radius Fracture (DRF) rehabilitation and fracture prevention, it is important to understand the epidemiology and factors predictive of injury, chronic pain, chronic disability, and subsequent fracture. PURPOSE: To summarize the literature reporting on DRF epidemiology, risk factors, and prognostic factors. METHODS: Literature synthesis. RESULTS: Although incidence varies globally, DRFs are common across the lifespan and appear to be on the rise...
April 2016: Journal of Hand Therapy: Official Journal of the American Society of Hand Therapists
Christina Karamanidou, Kostas Dimopoulos
BACKGROUND: Every year in Europe 60,000 women develop cervical cancer and 30,000 die from the disease. HPV vaccines are currently believed to constitute an important element of cervical cancer control strategy. Currently in Greece, the HPV vaccine is given on demand after prescription by a healthcare professional. Health care professionals' role is key as they are in a position to discuss HPV vaccination with parents, adolescents and young women. This study is aiming to explore health care professionals' perceptions of the HPV vaccine, state policy recommendations and their own role with regards to communication of relevant health information...
2016: BMC Public Health
Matthew E Oster, Susan W Aucott, Jill Glidewell, Jesse Hackell, Lazaros Kochilas, Gerard R Martin, Julia Phillippi, Nelangi M Pinto, Annamarie Saarinen, Marci Sontag, Alex R Kemper
Newborn screening for critical congenital heart defects (CCHD) was added to the US Recommended Uniform Screening Panel in 2011. Within 4 years, 46 states and the District of Columbia had adopted it into their newborn screening program, leading to CCHD screening being nearly universal in the United States. This rapid adoption occurred while there were still questions about the effectiveness of the recommended screening protocol and barriers to follow-up for infants with a positive screen. In response, the Centers for Disease Control and Prevention partnered with the American Academy of Pediatrics to convene an expert panel between January and September 2015 representing a broad array of primary care, neonatology, pediatric cardiology, nursing, midwifery, public health, and advocacy communities...
May 2016: Pediatrics
Jeffrey P Brosco
Why might pediatric bioethicists in the United States reject the U.N. Convention on the Rights of the Child (CRC) as a framework for resolving ethical issues? The essays in this issue present arguments and counterarguments regarding the usefulness of the CRC in various clinical and research cases. But underlying this debate are two historical factors that help explain the seeming paradox of pediatric bioethicists' arguing against child's rights. First, the profession of clinical bioethics emerged in the 1970s as one component of modern medicine's focus on improving health through the application of technologically sophisticated treatments...
2016: Perspectives in Biology and Medicine
Andrew D Racine
The persistence of child poverty in the United States and the pervasive health consequences it engenders present unique challenges to the health care system. Human capital theory and empirical observation suggest that the increased disease burden experienced by poor children originates from social conditions that provide suboptimal educational, nutritional, environmental, and parental inputs to good health. Faced with the resultant excess rates of pediatric morbidity, the US health care system has developed a variety of compensatory strategies...
April 2016: Academic Pediatrics
Arthur H Fierman, Andrew F Beck, Esther K Chung, Megan M Tschudy, Tumaini R Coker, Kamila B Mistry, Benjamin Siegel, Lisa J Chamberlain, Kathleen Conroy, Steven G Federico, Patricia J Flanagan, Arvin Garg, Benjamin A Gitterman, Aimee M Grace, Rachel S Gross, Michael K Hole, Perri Klass, Colleen Kraft, Alice Kuo, Gena Lewis, Katherine S Lobach, Dayna Long, Christine T Ma, Mary Messito, Dipesh Navsaria, Kimberley R Northrip, Cynthia Osman, Matthew D Sadof, Adam B Schickedanz, Joanne Cox
Child poverty in the United States is widespread and has serious negative effects on the health and well-being of children throughout their life course. Child health providers are considering ways to redesign their practices in order to mitigate the negative effects of poverty on children and support the efforts of families to lift themselves out of poverty. To do so, practices need to adopt effective methods to identify poverty-related social determinants of health and provide effective interventions to address them...
April 2016: Academic Pediatrics
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