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ethic in pediatric

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https://www.readbyqxmd.com/read/28207982/understanding-ethical-issues-of-research-participation-from-the-perspective-of-participating-children-and-adolescents-a-systematic-review
#1
Stacey Crane, Marion E Broome
BACKGROUND: The past 20 years have seen distinct shifts in the way the participation of children and adolescents in research is viewed. This has been emphasized by the growing pediatric research enterprise. Additional information on children's and adolescents' experiences during research participation is needed to better inform researchers on the ethical conduct of research with this vulnerable population. AIMS: The objective of this analysis was to examine ethical issues in research with children and adolescents from their perspective as participants, including: assent, parental consent, risk perception, impact of research participation, and incentives...
February 16, 2017: Worldviews on Evidence-based Nursing
https://www.readbyqxmd.com/read/28159363/do-the-european-medicines-agency-decisions-hurt-pediatric-melanoma-patients
#2
REVIEW
Klaus Rose, Philip D Walson
PURPOSE: US pediatric legislation was introduced in 1997 and was followed by European Union pediatric legislation that, since 2007, requires a European Medicines Agency (EMA)-approved pediatric investigation plan (PIP) for registration of new medicines unless they are PIP exempted. In 2008, the EMA decided that enough adolescent patients with melanoma existed and removed melanoma from the list of PIP-exempted diseases (class waiver list). We examined the logic and the results of this decision...
January 31, 2017: Clinical Therapeutics
https://www.readbyqxmd.com/read/28141771/ethics-in-the-pediatric-emergency-department-when-mistakes-happen-an-approach-to-the-process-evaluation-and-response-to-medical-errors
#3
Naomi Dreisinger, Nathan Zapolsky
The emergency department (ED) is an environment that is conducive to medical errors. The ED is a time-pressured environment where physicians aim to rapidly evaluate and treat patients. Quick thinking and problem-based solutions are often used to assist in evaluation and diagnosis. Error analysis leads to an understanding of the cause of a medical error and is important to prevent future errors. Research suggests mechanisms to prevent medical errors in the pediatric ED, but prevention is not always possible...
February 2017: Pediatric Emergency Care
https://www.readbyqxmd.com/read/28140662/pediatric-issues-in-return-of-results-and-incidental-findings-weighing-autonomy-and-best-interests
#4
Ingrid A Holm
Nowhere are the ethical issues in genomic research more complex than in pediatrics. Balancing the sometime conflicting autonomy of the parent and the child, and the best interest of the family and the child, brings up many challenging issues. Addressing this balance, especially in the context of the child's developing maturity and comprehension, requires deep analysis and discussion. Issues discussed include the impact of genetic information on the family, parental versus the child's autonomy, the best interests of the child versus the family, potential limitations on the parents' right to know or not know information about their child, and changing role of the developing child in return of research results...
January 31, 2017: Genetic Testing and Molecular Biomarkers
https://www.readbyqxmd.com/read/28132577/unsolved-challenges-in-pediatric-whole-exome-sequencing-a-literature-analysis
#5
Gabrielle Bertier, Karine Sénécal, Pascal Borry, Danya F Vears
Whole-exome sequencing (WES) has been instrumental in the discovery of novel genes and mechanisms causing Mendelian diseases. While this technology is now being successfully applied in a number of clinics, particularly to diagnose patients with rare diseases, it also raises a number of ethical, legal and social issues. In order to identify what challenges were directly foreseen by technology users, we performed a systematic review of the literature. In this paper, we focus on recent publications related to the use of WES in the pediatric context and analyze the most prominent challenges raised by technology users...
January 28, 2017: Critical Reviews in Clinical Laboratory Sciences
https://www.readbyqxmd.com/read/28106679/a-daisy-nurse-moral-distress-and-end-of-life-decisions-in-the-pediatric-setting
#6
Cynthia Divens Sweeney
What does it mean to be a "DAISY nurse"? Moral distress and end-of-life issues are difficult in any situation but, within the context of a pediatric setting, can be even more difficult. In this column, a DAISY nurse shares her thoughts on her role, her professional journey to explore moral distress and ethical decision making, and the lessons learned that led to her recognition with The DAISY Award and the joyful celebration.
February 2017: Journal of Nursing Administration
https://www.readbyqxmd.com/read/28096516/newborn-sequencing-in-genomic-medicine-and-public-health
#7
Jonathan S Berg, Pankaj B Agrawal, Donald B Bailey, Alan H Beggs, Steven E Brenner, Amy M Brower, Julie A Cakici, Ozge Ceyhan-Birsoy, Kee Chan, Flavia Chen, Robert J Currier, Dmitry Dukhovny, Robert C Green, Julie Harris-Wai, Ingrid A Holm, Brenda Iglesias, Galen Joseph, Stephen F Kingsmore, Barbara A Koenig, Pui-Yan Kwok, John Lantos, Steven J Leeder, Megan A Lewis, Amy L McGuire, Laura V Milko, Sean D Mooney, Richard B Parad, Stacey Pereira, Joshua Petrikin, Bradford C Powell, Cynthia M Powell, Jennifer M Puck, Heidi L Rehm, Neil Risch, Myra Roche, Joseph T Shieh, Narayanan Veeraraghavan, Michael S Watson, Laurel Willig, Timothy W Yu, Tiina Urv, Anastasia L Wise
The rapid development of genomic sequencing technologies has decreased the cost of genetic analysis to the extent that it seems plausible that genome-scale sequencing could have widespread availability in pediatric care. Genomic sequencing provides a powerful diagnostic modality for patients who manifest symptoms of monogenic disease and an opportunity to detect health conditions before their development. However, many technical, clinical, ethical, and societal challenges should be addressed before such technology is widely deployed in pediatric practice...
January 17, 2017: Pediatrics
https://www.readbyqxmd.com/read/28077127/navigating-social-and-ethical-challenges-of-biobanking-for-human-microbiome-research
#8
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
#9
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
#10
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
#11
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
#12
(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
#13
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
#14
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...
February 2017: 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
#15
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
#16
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
#17
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...
February 2017: Archives de Pédiatrie: Organe Officiel de la Sociéte Française de Pédiatrie
https://www.readbyqxmd.com/read/27988223/mexican-registry-of-pulmonary-hypertension-remehip
#18
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...
January 2017: 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
#19
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
#20
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
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