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https://www.readbyqxmd.com/read/28077127/navigating-social-and-ethical-challenges-of-biobanking-for-human-microbiome-research
#1
Kim H Chuong, David M Hwang, D Elizabeth Tullis, Valerie J Waters, Yvonne C W Yau, David S Guttman, Kieran C O'Doherty
BACKGROUND: Biobanks are considered to be key infrastructures for research development and have generated a lot of debate about their ethical, legal and social implications (ELSI). While the focus has been on human genomic research, rapid advances in human microbiome research further complicate the debate. DISCUSSION: We draw on two cystic fibrosis biobanks in Toronto, Canada, to illustrate our points. The biobanks have been established to facilitate sample and data sharing for research into the link between disease progression and microbial dynamics in the lungs of pediatric and adult patients...
January 11, 2017: BMC Medical Ethics
https://www.readbyqxmd.com/read/28045885/moral-distress-model-reconstructed-using-grounded-theory
#2
Hsun-Kuei Ko, Chi-Chun Chin, Min-Tao Hsu
BACKGROUND: The problems of nurse burnout and manpower shortage relate to moral distress. Thus, having a good understanding of moral distress is critical to developing strategies that effectively improve the clinical ethical climate and improve nursing retention in Taiwan. PURPOSE: The aim of this study was to reconstruct the model of moral distress using the grounded theory. METHODS: Twenty-five staff nurses at work units who attend to the needs of adult, pediatric, acute, and critical disease or end-of-life-care patients were recruited as participants using theoretical sampling from three teaching hospitals in Taiwan...
December 29, 2016: Journal of Nursing Research: JNR
https://www.readbyqxmd.com/read/28043109/a-possible-pathogenic-linkage-among-headache-migraine-and-nocturnal-enuresis-in-children
#3
Pietro Ferrara, Livia Dell'Aquila, Giacomo Perrone, Giulia Spina, Francesco Miconi, Valentina Rapaccini, Ester Del Vescovo, Vincenzo Di Lazzaro, Alberto Verrotti
PURPOSE: This study aims to evaluate the prevalence of headaches and migraine in children with nocturnal enuresis (NE) and to improve knowledge on these conditions. In particular, for this purpose, a possible pathogenic relationship linking both conditions and the impact of headaches and migraine on NE persistence was evaluated. METHODS: Researchers enrolled 123 children with NE, aged between 5 and 15 years, referred to the Service of Pediatrics, Campus Bio-Medico University Hospital of Rome between January 2014 and January 2015...
December 2016: International Neurourology Journal
https://www.readbyqxmd.com/read/28025426/life-and-medical-ethics-in-pediatric-neurosurgery
#4
Mami Yamasaki
Ethical issues in the field of pediatric neurosurgery, including prenatal diagnosis, palliative care for children with an intractable serious disease, and medical neglect, are discussed. An important role of medicine is to offer every possible treatment to a patient. However, it also is the responsibility of medicine to be conscious of its limitations, and to help parents love and respect a child who suffers from an incurable disease. When dealing with cases of medical neglect and palliative care for an incurable disease, it is critical to diagnose the child's condition accurately and evaluate the outcome...
December 26, 2016: Neurologia Medico-chirurgica
https://www.readbyqxmd.com/read/28025237/responsible-innovation-in-children-s-surgical-care
#5
(no author information available yet)
Advances in medical care may occur when a change in practice incorporates a new treatment or methodology. In surgery, this may involve the translation of a completely novel concept into a new procedure or device or the adaptation of existing treatment approaches or technology to a new clinical application. Regardless of the specifics, innovation should have, as its primary goal, the enhancement of care leading to improved outcomes from the patient's perspective. This policy statement examines innovation as it pertains to surgical care, focusing on some of the definitions that help differentiate applied innovation or innovative therapy from research...
January 2017: Pediatrics
https://www.readbyqxmd.com/read/28009246/locating-risk-in-the-adolescent-brain-ethical-challenges-in-the-use-of-biomarkers-for-adolescent-health-and-social-policy
#6
Suparna Choudhury, Sheehan Moore
Technological developments in neuroscience over the last 20 years have generated excitement about the potential of neuroscientific insights for the understanding of and intervention in children's and adolescents' behavior. This article introduces some ways in which new results from developmental cognitive neuroscience have been appropriated in the context of adolescent mental health. We also consider social and interpersonal factors that drive the use of neurobiological markers of mental disorders in pediatric psychiatry...
December 1, 2016: AMA Journal of Ethics
https://www.readbyqxmd.com/read/28007511/-neonatal-palliative-care-at-home-contribution-of-the-regional-pediatric-palliative-care-team
#7
N Cojean, C Strub, P Kuhn, L Calvel
The "patients' rights and end-of-life care" act, known as the Leonetti law, has allowed implementation of palliative care in neonatology as an alternative to unreasonable therapeutic interventions. A palliative care project can be offered to newborns suffering from intractable diseases. It must be focused on the newborn's quality of life and comfort and on family support. Palliative care for newborns can be provided in the delivery room, in the neonatal unit, and also at home. Going home is possible but requires medical support...
December 19, 2016: Archives de Pédiatrie: Organe Officiel de la Sociéte Française de Pédiatrie
https://www.readbyqxmd.com/read/28001330/-kids-need-to-talk-too-inclusive-practices-for-children-s-health-care-education-and-participation
#8
Donna Koller
AIMS AND OBJECTIVES: This study examines how children with chronic medical conditions view health care education and decision-making. This article aims to propose the application of universal design for learning (UDL) in pediatric settings. BACKGROUND: Children and adolescents with chronic medical conditions tend to be excluded from health care decision-making. In schools, the universal design for learning (UDL) promotes access to education and participation in school communities for all children, regardless of their disabilities or medical needs, rendering it an appropriate model for children's participation in health care decision-making...
December 21, 2016: Journal of Clinical Nursing
https://www.readbyqxmd.com/read/27998672/quantitation-of-bleeding-symptoms-in-a-national-registry-of-patients-with-inherited-platelet-disorders
#9
Shoshana Revel-Vilk, Chana Richter, Tal Ben-Ami, Joanne Yacobovich, Shraga Aviner, Ayelet Ben-Barak, Amir Asher Kuperman, Shira Ben-Barak, Chaim Kaplinsky, Hagit Miskin, Hannah Tamary, Gili Kenet
BACKGROUND: Inherited platelet deficiency and/or dysfunction may be more common in the general population than has previously been appreciated. In 2013 the Israeli Inherited Platelet Disorder (IPD) Registry was established. METHODS: Clinical and laboratory data were collected to pre-specified registration forms. The study protocol was approved by the local hospital ethics committees. RESULTS: To date we have included in the registry 89 patients (male 52%) from 79 families...
December 17, 2016: Blood Cells, Molecules & Diseases
https://www.readbyqxmd.com/read/27989403/-speaking-about-life-and-death-in-neonatology-how-can-communication-with-families-be-optimized
#10
T Pennaforte, A Moussa, A Janvier
Technological progress and improved clinical knowledge have increased survival of neonates who would previously have died. Survival is sometimes accompanied by a risk of short- or long-term adverse outcomes, which may lead to complex decisions about withholding or withdrawing life-sustaining interventions. These decisions are among the most difficult decisions in pediatric practice. They also involve communicating with parents and are emotionally charged. Many articles examining end-of-life decisions in neonatology state the need for healthcare providers to be caring, compassionate, and human without offering clear, practical advice...
December 15, 2016: Archives de Pédiatrie: Organe Officiel de la Sociéte Française de Pédiatrie
https://www.readbyqxmd.com/read/27988223/mexican-registry-of-pulmonary-hypertension-remehip-registro-mexicano-de-hipertensi%C3%A3-n-pulmonar
#11
Julio Sandoval Zarate, Carlos Jerjes-Sanchez, Alicia Ramirez-Rivera, Tomas Pulido Zamudio, Pedro Gutierrez-Fajardo, Jose Elizalde Gonzalez, Mario Seoane Garcia De Leon, Miguel Beltran Gamez, Francisco Moreno Hoyos Abril, Rodolfo Parra Michel, Humberto Garcia Aguilar
OBJECTIVE: REMEHIP is a prospective, multicentre registry on pulmonary hypertension. The main objective will be to identify the clinical profile, medical care, therapeutic trends and outcomes in adult and pediatric Mexican patients with well-characterized pulmonary hypertension. METHODS: REMEHIP a multicenter registry began in 2015 with a planned recruitment time of 12 months and a 4-year follow-up. The study population will comprise a longitudinal cohort study, collecting data on patients with prevalent and incident pulmonary hypertension...
December 14, 2016: Archivos de Cardiología de México
https://www.readbyqxmd.com/read/27976409/oral-drug-absorption-in-pediatrics-the-intestinal-wall-its-developmental-changes-and-current-tools-for-predictions
#12
REVIEW
Jean-Marie Nicolas, François Bouzom, Hugues Chanteux, Anna-Lena Ungell
The dissolution, intestinal absorption and presystemic metabolism of a drug depend on its physicochemical characteristics but also on numerous physiological (e.g. gastrointestinal pH, volume, transit time, morphology) and biochemical factors (e.g. luminal enzymes and flora, intestinal wall enzymes and transporters). Over the last decade, evidence has accumulated indicating that these factors may differ in children and adults resulting in age-related changes in drug exposure and drug response. Thus, drug dosage may require adjustment for the pediatric population to ensure the desired therapeutic outcome and to avoid side-effects...
December 15, 2016: Biopharmaceutics & Drug Disposition
https://www.readbyqxmd.com/read/27968868/timing-and-approaches-in-congenital-cataract-surgery-a-randomised-controlled-trial
#13
Weirong Chen, Erping Long, Jingjing Chen, Zhenzhen Liu, Zhuoling Lin, Qianzhong Cao, Xiaohang Wu, Qiwei Wang, Duoru Lin, Xiaoyan Li, Lixia Luo, Bo Qu, Haotian Lin, Yizhi Liu
BACKGROUND: The optimum timing of surgery and the approach that should be used during congenital cataract surgery are controversial and present challenges for paediatric cataract surgeons in China. The aim of this study was to compare visual prognoses and postoperative adverse effects of paediatric cataract surgery done at different times and using different surgical approaches. METHODS: In this prospective, randomised controlled trial, we recruited Chinese patients aged 3 months or younger who were diagnosed with bilateral diffuse or total cataracts, but who did not have coexisting ocular, systemic or neurological diseases...
October 2016: Lancet
https://www.readbyqxmd.com/read/27940891/researchers-regulators-and-sponsors-views-on-pediatric-clinical-trials-a-multinational-study
#14
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/27940784/parental-refusal-of-surgery-in-an-infant-with-tricuspid-atresia
#15
Alexander A Kon, Angira Patel, Steven Leuthner, John D Lantos
We present a case of a fetal diagnosis of tricuspid atresia (TA). The pregnant woman and her husband requested that the baby be treated with only palliative care. The cardiologist did not think it would be appropriate to withhold life-prolonging surgery once the infant was born. The neonatologist argued that outcomes for TA are similar to those for hypoplastic left heart syndrome, and the standard practice at the institution was to allow parents to choose surgery or end-of-life care for those infants. The team requested an ethics consultation to assist in determining whether forgoing life-prolonging interventions in this case would be ethically supportable...
November 2016: Pediatrics
https://www.readbyqxmd.com/read/27940747/disclosure-of-adverse-events-in-pediatrics
#16
(no author information available yet)
Despite increasing attention to issues of patient safety, preventable adverse events (AEs) continue to occur, causing direct and consequential injuries to patients, families, and health care providers. Pediatricians generally agree that there is an ethical obligation to inform patients and families about preventable AEs and medical errors. Nonetheless, barriers, such as fear of liability, interfere with disclosure regarding preventable AEs. Changes to the legal system, improved communications skills, and carefully developed disclosure policies and programs can improve the quality and frequency of appropriate AE disclosure communications...
December 2016: Pediatrics
https://www.readbyqxmd.com/read/27925849/development-and-prospective-federal-state-wide-evaluation-of-a-device-for-height-based-dose-recommendations-in-prehospital-pediatric-emergencies-a-simple-tool-to-prevent-most-severe-drug-errors
#17
Jost Kaufmann, Bernhard Roth, Thomas Engelhardt, Alex Lechleuthner, Michael Laschat, Christoph Hadamitzky, Frank Wappler, Martin Hellmich
OBJECTIVE: Drug dosing errors pose a particular threat to children in prehospital emergency care. With the Pediatric emergency ruler (PaedER), we developed a simple height-based dose recommendation system and evaluated its effectiveness in a pre-post interventional trial as the Ethics Committee disapproved randomization due to the expected positive effect of the PaedER on outcome. METHODS: Pre-interventional data were retrospectively retrieved from the electronic records and medical protocols of the Cologne Emergency Medical Service over a two-year period prior to the introduction of the PaedER...
December 7, 2016: Prehospital Emergency Care
https://www.readbyqxmd.com/read/27920347/effectiveness-of-pediatric-palliative-care-education-on-pediatric-clinicians
#18
Niang-Huei Peng, Cheng-Han Lee, Min-Chun Lee, Li-Chi Huang, Yue-Cune Chang, Joetta DeSwarte-Wallace
A lack of knowledge and skills in pediatric palliative care may create hesitation in caring for children with serious life-threatening conditions and their families. Our research examined the effectiveness of pediatric palliative care training for pediatric clinicians. A pretest-posttest study provided educational training in pediatric palliative care to pediatric clinicians and used a pretest and a posttest to assess outcomes. Fifty pediatric clinicians attended this research with 83.3% response rate. After training, participants reported significantly increased confidence in a variety of areas, including providing emotional support to clinicians, personal knowledge, skills, and communication; ethical and legal concerns; and providing emotional support to dying children and their families...
December 5, 2016: Western Journal of Nursing Research
https://www.readbyqxmd.com/read/27906588/fertility-preservation-in-pediatric-and-adolescent-oncology-patients-the-decision-making-process-of-parents
#19
Nancy Li, Yasmin Jayasinghe, Matthew A Kemertzis, Paddy Moore, Michelle Peate
PURPOSE: Decisions surrounding fertility preservation (FP) in children, adolescents, and adults can be difficult due to the distress of a cancer diagnosis, time constraints for decision-making, and lack of efficacy data. This review examines the decision-making process of oncology patients and their parents (if patients are in the pediatric or adolescent population) to better understand experiences of decisional conflict and regret. METHODS: Two electronic databases, Embase and Pubmed, were searched using the terms (Decision-making OR Conflict (Psychology) OR Decision regret) AND (Freezing OR Oocyte OR Ovarian tissue OR Semen preservation OR Fertility preservation OR Cryopreservation) AND (Neoplasms OR Cancer OR Chemotherapy OR Drug therapy OR Radiotherapy)...
December 1, 2016: Journal of Adolescent and Young Adult Oncology
https://www.readbyqxmd.com/read/27884969/ethics-knowledge-of-recent-paediatric-residency-graduates-the-role-of-residency-ethics-curricula
#20
Jennifer C Kesselheim, Julie Najita, Debra Morley, Elizabeth Bair, Steven Joffe
OBJECTIVE: To evaluate the relationship between recently trained paediatricians' ethics knowledge and exposure to a formal ethics or professionalism curriculum during residency. METHODS: We conducted a cross-sectional survey of recently trained paediatricians which included a validated 23-item instrument called the Test of Residents' Ethics Knowledge for Pediatrics. The sample included paediatricians who completed medical school in 2006-2008, whose primary specialty was paediatrics or a paediatric subspecialty, and who completed paediatric residency training in 2010-2011...
December 2016: Journal of Medical Ethics
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