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https://www.readbyqxmd.com/read/29776979/ethical-challenges-raised-by-opennotes-for-pediatric-and-adolescent-patients
#1
Fabienne C Bourgeois, Catherine M DesRoches, Sigall K Bell
Sharing clinic notes online with patients and parents may yield many potential benefits to patients and providers alike, but the unprecedented transparency and accessibility to notes afforded by patient portals has also raised a number of unique ethical and legal concerns. As the movement toward transparent notes (OpenNotes) grows, clinicians and health care organizations caring for pediatric and adolescent patients wrestle with how to document confidential and sensitive information, including issues such as reproductive health, misattributed paternity, or provider and parent disagreements...
May 18, 2018: Pediatrics
https://www.readbyqxmd.com/read/29771160/effects-of-an-intervention-program-for-pomoting-ethical-practices-among-pediatric-nurses
#2
Naomi Matsumori
The Japanese nursing education system only requires a general nursing qualification. After graduation, many Japanese nurses work within pediatric departments where they receive specialized training in pediatric care. An intervention program for promoting ethical nursing practices among patients and their families was implemented for pediatric nurses with 0-5 years pediatric nursing experience. The objective of this study was to clarify changes in nurses' recognition and behaviors, as well as the intervention's post-initiation durability...
May 17, 2018: Comprehensive Child and Adolescent Nursing
https://www.readbyqxmd.com/read/29766748/medical-cannabis-for-pediatric-moderate-to-severe-complex-motor-disorders
#3
Stephanie Libzon, Lihi Bar-Lev Schleider, Naama Saban, Luda Levit, Yulia Tamari, Ilan Linder, Tally Lerman-Sagie, Lubov Blumkin
A complex motor disorder is a combination of various types of abnormal movements that are associated with impaired quality of life (QOL). Current therapeutic options are limited. We studied the efficacy, safety, and tolerability of medical cannabis in children with complex motor disorder. This pilot study was approved by the institutional ethics committee. Two products of cannabidiol (CBD) enriched 5% oil formulation of cannabis were compared: one with 0.25% δ-9-tetrahydrocannabinol (THC) 20:1 group, the other with 0...
January 1, 2018: Journal of Child Neurology
https://www.readbyqxmd.com/read/29759958/data-access-and-usage-practices-across-a-cohort-of-researchers-at-a-large-tertiary-pediatric-hospital-qualitative-survey-study
#4
Hoi Ki Kiki Ho, Matthias Görges, Elodie Portales-Casamar
BACKGROUND: Health and health-related data collected as part of clinical care is a foundational component of quality improvement and research. While the importance of these data is widely recognized, there are many challenges faced by researchers attempting to use such data. It is crucial to acknowledge and identify barriers to improve data sharing and access practices and ultimately optimize research capacity. OBJECTIVE: To better understand the current state, explore opportunities, and identify barriers, an environmental scan of investigators at BC Children's Hospital Research Institute (BCCHR) was conducted to elucidate current local practices around data access and usage...
May 14, 2018: JMIR Medical Informatics
https://www.readbyqxmd.com/read/29756714/developing-child-autonomy-in-pediatric-healthcare-towards-an-ethical-model
#5
Kyriakos Martakis, Helmut Brand, Peter Schröder-Bäck
The changes initiated by the new National Civil and Commercial Code in Argentina underline the pediatric task to empower children's and adolescents' developing autonomy. In this paper, we have framed a model describing autonomy in child healthcare. We carried out a literature review focusing on i) the concept of autonomy referring to the absolute value of the autonomous individual, and ii) the age-driven process of competent decisionmaking development. We summarized our findings developing a conceptual model that includes the child, the pediatrician and the parents...
June 1, 2018: Archivos Argentinos de Pediatría
https://www.readbyqxmd.com/read/29756531/the-ethics-of-end-of-trial-obligations-in-a-pediatric-malaria-vaccine-trial-the-perspectives-of-stakeholders-from-ghana-and-tanzania
#6
Claire Leonie Ward, David Shaw, Evelyn Anane-Sarpong, Osman Sankoh, Marcel Tanner, Bernice Elger
This study explores stakeholder experiences and perspectives on end-of-trial obligations at the close of a phase II/III Pediatric Malaria Vaccine Trial (PMVT) [GSK/PATH-MVI RTS, S) (NCT00866619]. We conducted 52 key informant interviews with major stakeholders of an international multicentre PMVT in Ghana and Tanzania. The responses fell into four main themes: (a) Communicating End-of-Trial, (b) Maintaining Health Care Services, (c) Dissemination of Results, and (d) Post-Trial Access. Interviewee responses shared important practical experiences and insights that complement current thinking in the literature on research ethics guidance: (a) accompany end-of-trial communication with information on personal and family health care responsibilities, (b) establish public health indicators to measure the impact of research on a health care system,...
May 1, 2018: Journal of Empirical Research on Human Research Ethics: JERHRE
https://www.readbyqxmd.com/read/29754867/assessing-ethics-knowledge-development-of-a-test-of-ethics-knowledge-in-neonatology
#7
Christy L Cummings, Gina M Geis, Henry A Feldman, Elisa R Berson, Jennifer C Kesselheim
OBJECTIVE: To develop and validate the Test of Ethics Knowledge in Neonatology (TEK-Neo) with good internal consistency reliability, item performance, and construct validity that reliably assesses interprofessional staff and trainee knowledge of neonatal ethics. STUDY DESIGN: We adapted a published test of ethics knowledge for use in neonatology. The novel instrument had 46 true/false questions distributed among 7 domains of neonatal ethics: ethical principles, professionalism, genetic testing, beginning of life/viability, end of life, informed permission/decision making, and research ethics...
May 10, 2018: Journal of Pediatrics
https://www.readbyqxmd.com/read/29751362/low-prevalence-of-palliative-care-and-ethics-consultations-for-children-with-chronic-critical-illness
#8
Renee D Boss, Alison Falck, Naomi Goloff, Nancy Hutton, Alison Miles, Miriam Shapiro, Elliott M Weiss, Pamela K Donohue
Medical advances over the past two decades have increased the numbers of children who survive serious conditions. Mortality from premature birth and genetic syndromes has improved such that more clinicians offer, and more families request, interventions to prolong their child's life. While some interventions promise cure, others result in chronic disease states that require ongoing medical care. This article is protected by copyright. All rights reserved.
May 11, 2018: Acta Paediatrica
https://www.readbyqxmd.com/read/29743330/protocol-for-a-randomised-trial-of-higher-versus-lower-intensity-patient-provider-communication-interventions-to-reduce-antibiotic-misuse-in-two-paediatric-ambulatory-clinics-in-the-usa
#9
Kathy Goggin, Andrea Bradley-Ewing, Angela L Myers, Brian R Lee, Emily A Hurley, Kirsten B Delay, Sarah Schlachter, Areli Ramphal, Kimberly Pina, David Yu, Kirsten Weltmer, Sebastian Linnemayr, Christopher C Butler, Jason G Newland
INTRODUCTION: Children with acute respiratory tract infections (ARTIs) are prescribed up to 11.4 million unnecessary antibiotic prescriptions annually. Inadequate parent-provider communication is a chief contributor, yet efforts to reduce overprescribing have only indirectly targeted communication or been impractical. This paper describes our multisite, parallel group, cluster randomised trial comparing two feasible interventions for enhancing parent-provider communication on the rate of inappropriate antibiotic prescribing (primary outcome) and revisits, adverse drug reactions and parent-rated quality of shared decision-making, parent-provider communication and visit satisfaction (secondary outcomes)...
May 9, 2018: BMJ Open
https://www.readbyqxmd.com/read/29742889/intraoperative-neurophysiological-monitoring-a-review-of-techniques-used-for-brain-tumor-surgery-in-children
#10
REVIEW
Keewon Kim, Charles Cho, Moon-Suk Bang, Hyung-Ik Shin, Ji-Hoon Phi, Seung-Ki Kim
Intraoperative monitoring (IOM) utilizes electrophysiological techniques as a surrogate test and evaluation of nervous function while a patient is under general anesthesia. They are increasingly used for procedures, both surgical and endovascular, to avoid injury during an operation, examine neurological tissue to guide the surgery, or to test electrophysiological function to allow for more complete resection or corrections. The application of IOM during pediatric brain tumor resections encompasses a unique set of technical issues...
May 2018: Journal of Korean Neurosurgical Society
https://www.readbyqxmd.com/read/29739317/novel-functional-advanced-echocardiography-for-the-assessment-of-myocardial-mechanics-in-children-with-neurocardiogenic-syncope-a-blinded-prospective-speckle-tracking-head-up-tilt-table-challenge-study
#11
Kai O Hensel, Markus Roskopf, Francisca Abellan Schneyder, Andreas Heusch
BACKGROUND: Data on left ventricular (LV) function in patients with neurocardiogenic syncope (NS) is conflicting in adults and lacking in children. The aim of this study was to analyze LV myocardial performance in children with NS at rest and during head-up tilt-table (HUTT) testing. METHODS: This is the first study to combine HUTT and speckle-tracking echocardiography (STE) in children with NS. 43 consecutive normotensive pediatric patients with NS (mean age 13...
May 8, 2018: BMC Cardiovascular Disorders
https://www.readbyqxmd.com/read/29728430/an-extravagant-gift-from-a-grateful-patient
#12
Akshay Sharma, Liza-Marie Johnson, Amy Caruso Brown, Yoram Unguru, John D Lantos
Gift giving is psychologically and culturally complex. In any context, a gift can have multiple meanings. In the context of the doctor-patient relationship, the giving of gifts and decisions about whether to accept gifts raise complex ethical issues. In this essay, a number of pediatric oncologists discuss the ethical considerations that should guide physicians as they decide how to respond to an extravagant gift from a family.
May 4, 2018: Pediatrics
https://www.readbyqxmd.com/read/29727056/a-comparison-of-ketamine-midazolam-to-propofol-for-procedural-sedation-for-lumbar-puncture-in-pediatric-oncology-by-nonanesthesiologists-a-randomized-comparative-trial
#13
Varsha Chayapathi, Manas Kalra, Anita S Bakshi, Amita Mahajan
BACKGROUND: Both ketamine-midazolam and propofol are frequently used in pediatric oncology units for procedural sedation. However, there are no prospective, randomized comparative trials (RCT) comparing the two groups when the procedure is performed by nonanesthesiologists. OBJECTIVE: To compare ketamine + midazolam (group A) and propofol (group B) as sedative agents for intrathecal chemotherapy with regard to efficacy, side effects, time to induction, time to recovery, and smoothness of recovery...
May 4, 2018: Pediatric Blood & Cancer
https://www.readbyqxmd.com/read/29724189/pretherapeutic-fdg-pet-total-metabolic-tumor-volume-predicts-response-to-induction-therapy-in-pediatric-hodgkin-s-lymphoma
#14
Julian M M Rogasch, Patrick Hundsdoerfer, Frank Hofheinz, Florian Wedel, Imke Schatka, Holger Amthauer, Christian Furth
BACKGROUND: Standardized treatment in pediatric patients with Hodgkin's lymphoma (HL) follows risk stratification by tumor stage, erythrocyte sedimentation rate and tumor bulk. We aimed to identify quantitative parameters from pretherapeutic FDG-PET to assist prediction of response to induction chemotherapy. METHODS: Retrospective analysis in 50 children with HL (f:18; m:32; median age, 14.8 [4-18] a) consecutively treated according to EuroNet-PHL-C1 (n = 42) or -C2 treatment protocol (n = 8)...
May 3, 2018: BMC Cancer
https://www.readbyqxmd.com/read/29718853/pediatric-tuina-for-promoting-growth-and-development-of-preterm-infants-a-protocol-for-the-systematic-review-of-randomized-controlled-trail
#15
Xinghe Zhang, Taipin Guo, Bowen Zhu, Qing Gao, Hourong Wang, Xiantao Tai, Fujie Jing
BACKGROUND: Preterm infants are babies born alive before 37 weeks. Many survived infants concomitant with defects of growth and development, a lifetime of disability usually as following when insufficient intervention. In early intervention of preterm infants, pediatric Tuina shows good effect in many Chinese and some English clinical trials. This systematic review is aimed to evaluate the efficacy and safety of pediatric Tuina for promoting growth and development of preterm infants. METHODS: The electronic databases of Cochrane Library, MEDLINE, EBASE, Web of Science, Springer, World Health Organization International Clinical Trials Registry Platform, China National Knowledge Infrastructure, Chinese Biomedical Literature Database, Wan-fang database, Chinese Scientific Journal Database, and other databases will be searched from establishment to April 1, 2018...
May 2018: Medicine (Baltimore)
https://www.readbyqxmd.com/read/29716830/pediatric-donation-after-circulatory-determination-of-death-pdcd-a-narrative-review
#16
REVIEW
Matthew J Weiss, Wendy Sherry, Laura Hornby
Pediatric donation after circulatory death (pDCD) is an established pathway for organ donation. It remains, however, a relatively rare event worldwide, and most clinicians outside of the pediatric intensive care unit (PICU) are unfamiliar with it. The goal of this review is to introduce the processes and concepts of pDCD. While most children die in circumstances that would not allow pDCD, many children that die after withdrawal of life sustaining therapy (WLST) may be eligible for donation of some organs. The potential benefits of this practice to patients on the wait list are well known, but donation can also be an opportunity to honor a patient's or family's desire to altruistically improve the lives of others...
April 14, 2018: Paediatric Respiratory Reviews
https://www.readbyqxmd.com/read/29716399/informed-consent-in-pediatric-oncology-a-systematic-review-of-qualitative-literature
#17
Ghiath Alahmad
OBJECTIVE: Obtaining informed consent in pediatric cancer research can be subject to important ethical challenges because of the difficulty in distinguishing between care and research, which are interrelated. Pediatric oncologists also often conduct research, such as clinical trials, on their own patients, which may influence voluntary informed consent. This review aims to determine the ethical issues encountered in obtaining informed consent in pediatric oncology by identifying and summarizing the findings of existing qualitative studies on this topic...
January 2018: Cancer Control: Journal of the Moffitt Cancer Center
https://www.readbyqxmd.com/read/29714610/industry-and-patient-perspectives-on-child-participation-in-clinical-trials-the-pediatric-assent-initiative-survey-report
#18
Donald Lombardi, Liza Squires, Philip Sjostedt, Irmgard Eichler, Mark A Turner, Charles Thompson
BACKGROUND: Obtaining assent from children participating in clinical trials acknowledges autonomy and developmental ability to contribute to the consent process. This critical step in pediatric drug development remains poorly understood, with significant room for improving the clarity, efficiency, and implementation of the assent process. Beyond ethical necessity of informing children about their treatment, the assent process provides the advantages of including children in discussions about their diagnosis and treatment-allowing greater understanding of interventions included in the study...
January 2018: Therapeutic Innovation & Regulatory Science
https://www.readbyqxmd.com/read/29714576/unique-burdens-of-pediatric-clinical-trials-in-duchenne-muscular-dystrophy-april-20-21-2017-bethesda-maryland-usa
#19
Timothy Franson, Kathi Kinnett, Timothy P Cripe
Recent increases in the number and breadth of clinical trials for patients with Duchenne muscular dystrophy (DMD) have engendered hope for a better future. Despite the overall enthusiasm by the DMD community for these trials, however, the burdens and pressures that they place on children with Duchenne muscular dystrophy and their families have become painfully apparent. In order to identify, and mediate, these challenges, Parent Project Muscular Dystrophy (PPMD) sponsored a meeting to examine some of these issues more closely in Bethesda, Maryland, on April 20-21, 2017...
January 1, 2018: Therapeutic Innovation & Regulatory Science
https://www.readbyqxmd.com/read/29701637/ethics-of-end-of-life-decisions-in-pediatrics-a-narrative-review-of-the-roles-of-caregivers-shared-decision-making-and-patient-centered-values
#20
REVIEW
Jonathan D Santoro, Mariko Bennett
Background: This manuscript reviews unique aspects of end of life decision-making in pediatrics. Methods: A narrative literature review of pediatric end of life issues was performed in the English language. Results: While a paternalistic approach is typically applied to children with life-limiting medical prognoses, the cognitive, language, and physical variability in this patient population is wide and worthy of review. In end of life discussions in pediatrics, the consideration of a child’s input is often not reviewed in depth, although a shared decision-making model is ideal for use, even for children with presumed limitations due to age...
April 26, 2018: Behavioral Sciences
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