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Pediatric health advocacy

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https://www.readbyqxmd.com/read/28331102/clinical-features-of-women-with-turner-syndrome-experiencing-transition-period-in-japan
#1
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
#2
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...
March 16, 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
#3
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
#4
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
#5
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
#6
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
#7
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
#8
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
#9
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
#10
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...
November 21, 2016: Clinical Pediatrics
https://www.readbyqxmd.com/read/27812509/type-1-diabetes-addressing-the-transition-from-pediatric-to-adult-oriented-health-care
#11
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
#12
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
#13
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
https://www.readbyqxmd.com/read/27621187/burden-of-disease-in-adult-patients-with-hypophosphatasia-results-from-two-patient-reported-surveys
#14
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
https://www.readbyqxmd.com/read/27588934/-you-know-the-medicine-i-know-my-kid-how-parents-advocate-for-their-children-living-with-complex-chronic-conditions
#15
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
https://www.readbyqxmd.com/read/27541698/variation-in-us-outpatient-antibiotic-prescribing-quality-measures-according-to-health-plan-and-geography
#16
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
https://www.readbyqxmd.com/read/27489404/the-role-of-the-world-health-organization-s-international-classification-of-functioning-health-and-disability-in-models-of-infant-cochlear-implant-management
#17
REVIEW
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
https://www.readbyqxmd.com/read/27464304/primary-ciliary-dyskinesia-first-health-related-quality-of-life-measures-for-pediatric-patients
#18
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
https://www.readbyqxmd.com/read/27442210/cancer-communication-on-social-media-examining-how-cancer-caregivers-use-facebook-for-cancer-related-communication
#19
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
https://www.readbyqxmd.com/read/27393387/practice-patterns-revisited-in-pediatric-psychosomatic-medicine
#20
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
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