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https://www.readbyqxmd.com/read/28365826/treatment-decisions-for-babies-with-trisomy-13-and-18
#1
Isabella Pallotto, John D Lantos
Many babies with trisomy 13 and 18 die in the first year of life. Survivors all have severe cognitive impairment. There has been a debate among both professionals and parents about whether it is appropriate to provide life-sustaining interventions to babies with these serious conditions. On one side of the debate are those who argue that there is no point in providing invasive, painful, and expensive procedures when the only outcomes are either early death or survival with severe cognitive impairment. Others suggest that, although mortality is high and cognitive impairment universal, babies with these conditions have an acceptable quality of life...
April 1, 2017: HEC Forum: An Interdisciplinary Journal on Hospitals' Ethical and Legal Issues
https://www.readbyqxmd.com/read/28329259/evaluation-of-modified-2-tiered-serodiagnostic-testing-algorithms-for-early-lyme-disease
#2
John A Branda, Klemen Strle, Lise E Nigrovic, Paul M Lantos, Timothy J Lepore, Nitin S Damle, Mary Jane Ferraro, Allen C Steere
Background.: The conventional 2-tiered serologic testing protocol for Lyme disease (LD), an enzyme immunoassay (EIA) followed by immunoglobulin M and immunoglobulin G Western blots, performs well in late-stage LD but is insensitive in patients with erythema migrans (EM), the most common manifestation of the illness. Western blots are also complex, difficult to interpret, and relatively expensive. In an effort to improve test performance and simplify testing in early LD, we evaluated several modified 2-tiered testing (MTTT) protocols, which use 2 assays designed as first-tier tests sequentially, without the need of Western blots...
April 15, 2017: Clinical Infectious Diseases: An Official Publication of the Infectious Diseases Society of America
https://www.readbyqxmd.com/read/28301843/specialty-based-variation-in-applying-maternal-fetal-surgery-trial-evidence
#3
Ryan M Antiel, Alan W Flake, Mark P Johnson, Nahla Khalek, Natalie E Rintoul, John D Lantos, Farr A Curlin, Jon C Tilburt, Chris Feudtner
INTRODUCTION: The Management of Myelomeningocele Study (MOMS) compared prenatal with postnatal surgery for fetal myelomeningocele (MMC). We sought to understand how subspecialists interpreted the trial results and whether their practice has changed. MATERIALS AND METHODS: Cross-sectional, mailed survey of 1,200 randomly selected maternal-fetal medicine (MFM) physicians, neonatologists, and pediatric surgeons. RESULTS: Of 1,176 eligible physicians, 670 (57%) responded...
March 17, 2017: Fetal Diagnosis and Therapy
https://www.readbyqxmd.com/read/28255068/genomic-contraindications-for-heart-transplantation
#4
Danton S Char, Gabriel Lázaro-Muñoz, Aliessa Barnes, David Magnus, Michael J Deem, John D Lantos
Genome sequencing raises new ethical challenges. Decoding the genome produces new forms of diagnostic and prognostic information; however, the information is often difficult to interpret. The connection between most genetic variants and their phenotypic manifestations is not understood. This scenario is particularly true for disorders that are not associated with an autosomal genetic variant. The analytic uncertainty is compounded by moral uncertainty about how, exactly, the results of genomic testing should influence clinical decisions...
March 2, 2017: Pediatrics
https://www.readbyqxmd.com/read/28174202/ethics-rounds-ethical-concerns-when-minors-act-as-standardised-patients
#5
Erwin Jiayuan Khoo, Robert D Schremmer, Douglas S Diekema, John D Lantos
When minors are asked to assist medical educators by acting as standardized patients (SPs), there is a potential for the minors to be exploited. Minors deserve protection from exploitation. Such protection has been written into regulations governing medical research and into child labor laws. But there are no similar guidelines for minors' work in medical education. This article addresses the question of whether there should be rules. Should minors be required to give their informed consent or assent? Are there certain practices that could cause harm for the children who become SPs? We present a controversial case and ask a number of experts to consider the ethical issues that arise when minors are asked to act as SPs in medical education...
February 7, 2017: Pediatrics
https://www.readbyqxmd.com/read/28096516/newborn-sequencing-in-genomic-medicine-and-public-health
#6
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...
February 2017: Pediatrics
https://www.readbyqxmd.com/read/28073959/surrogate-pregnancy-after-prenatal-diagnosis-of-spina-bifida
#7
Lynnette J Mazur, Mary Kay Kisthardt, Helen H Kim, Laura M Rosas, John D Lantos
Some pregnancies today involve infertile individuals or couples who contract with a fertile woman to carry a pregnancy for them. The woman who carries the pregnancy is referred to as a "gestational carrier." The use of such arrangements is increasing. Most of the time, these arrangements play out as planned; sometimes, however, problems arise. This article discusses a case in which a fetal diagnosis of spina bifida led the infertile couple to request that the gestational carrier terminate the pregnancy, and the gestational carrier did not wish to do so...
February 2017: Pediatrics
https://www.readbyqxmd.com/read/27940784/parental-refusal-of-surgery-in-an-infant-with-tricuspid-atresia
#8
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/27940720/should-neonatologists-give-opinions-withdrawing-life-sustaining-treatment
#9
J S Blumenthal-Barby, Laura Loftis, Christy L Cummings, William Meadow, Monica Lemmon, Peter A Ubel, Laurence McCullough, Emily Rao, John D Lantos
An infant has a massive intracranial hemorrhage. She is neurologically devastated and ventilator-dependent. The prognosis for pulmonary or neurologic recovery is bleak. The physicians and parents face a choice: withdraw the ventilator and allow her to die or perform a tracheotomy? The parents cling to hope for recovery. The physician must decide how blunt to be in communicating his own opinions and recommendations. Should the physician try to give just the facts? Or should he also make a recommendation based on his own values? In this article, experts in neonatology, decision-making, and bioethics discuss this situation and the choice that the physician faces...
December 2016: Pediatrics
https://www.readbyqxmd.com/read/27940514/should-school-boards-discontinue-support-for-high-school-football
#10
Lewis H Margolis, Greg Canty, Mark Halstead, John D Lantos
A pediatrician is asked by her local school board to help them decide whether to discontinue their high school football program. She reviews the available evidence on the risks of football and finds it hopelessly contradictory. Some scholars claim that football is clearly more dangerous than other sports. Others suggest that the risks of football are comparable to other sports, such as lacrosse, ice hockey, or soccer. She finds very little data on the long-term sequelae of concussions. She sees claims that good coaching and a school culture that prioritizes the health of athletes over winning can reduce morbidity from sports injuries...
January 2017: Pediatrics
https://www.readbyqxmd.com/read/27875646/bartleby-in-the-nicu
#11
John D Lantos
The doctors were frustrated. They could see only two options. Neither was very desirable. They could stop the ventilator and let the baby die. Or they could do a tracheostomy and start preparations to discharge him on a ventilator. The parents wanted a third option. They kept hoping that their baby would get better. The doctors were pretty sure that that wasn't going to happen.
November 2016: Hastings Center Report
https://www.readbyqxmd.com/read/27719691/a-survey-of-paediatricians-on-the-use-of-electrocardiogram-for-pre-participation-sports-screening
#12
Angira Patel, Gregory Webster, Kendra Ward, John Lantos
Aim The aim of the present study was to determine general paediatrician knowledge, practices, and attitudes towards electrocardiogram (ECG) screening in school athletes during pre-participation screening exam (PPSE). METHODS: Paediatricians affiliated with a tertiary children's hospital completed a survey about ECGs for PPSE. RESULTS: In total, 205/498 (41%) responded; 92% of the paediatricians did not include an ECG as part of PPSE; 56% were aware of a case in which a student athlete in their own community had died of sudden unexplained death; 4% had an athlete in their practice die...
October 10, 2016: Cardiology in the Young
https://www.readbyqxmd.com/read/27590900/should-pediatric-practices-have-policies-to-not-care-for-children-with-vaccine-hesitant-parents
#13
Kenneth Alexander, Tomas A Lacy, Angela L Myers, John D Lantos
One of the most divisive issues in pediatrics today concerns the proper response by pediatricians to parents who refuse routine childhood immunizations for their children. Many pediatricians refuse to care for such families. Others continue to provide care and continue to try to convince parents that the benefits of immunizations far outweigh the risks. Two of the most powerful arguments in favor of dismissing such parents are as follows: (1) their refusal suggests such lack of trust in the physicians' recommendations that it undermines the basis for a meaningful physician-patient-parent relationship; and (2) unimmunized children present an unacceptable risk to other children in the physicians' waiting rooms...
October 2016: Pediatrics
https://www.readbyqxmd.com/read/27499487/henry-k-beecher-and-the-oversight-of-research-in-children
#14
John Lantos
Henry K. Beecher was a pioneer of research ethics and a prominent whistleblower with regard to ethically problematic studies. Most of his work focused on research in adults, not children, but he did speculate about the implications of his ethical concerns for research in minors. This paper reviews Beecher's response to Krugman's studies of hepatitis at the Willowbrook State School and the debate that Beecher's article stimulated between Ramsey and McCormick. That debate shaped the terms that were used in current federal regulations for research in children...
2016: Perspectives in Biology and Medicine
https://www.readbyqxmd.com/read/27499480/editors-introduction
#15
Franklin G Miller, John Lantos
No abstract text is available yet for this article.
2016: Perspectives in Biology and Medicine
https://www.readbyqxmd.com/read/27494944/ethics-rounds-in-the-eye-of-a-social-media-storm
#16
Donna McKlindon, Jake A Jacobson, Pamela Nathanson, Jennifer K Walter, John D Lantos, Chris Feudtner
Social media, no stranger to health care environments, is increasingly used by patients, families, clinicians, and institutions to interact and engage in new ways. The ethical challenges related to the use of social media in the clinical setting are familiar, yet come with a novel twist, including the possibility of having a conflict "go viral". Health care clinicians and institutions must understand and embrace these technologies, while at the same time promoting policies and practices that ensure the ethically appropriate use of social media and address strategies for preventing and responding to a social media crisis...
September 2016: Pediatrics
https://www.readbyqxmd.com/read/27489297/stronger-and-more-vulnerable-a-balanced-view-of-the-impacts-of-the-nicu-experience-on-parents
#17
Annie Janvier, John Lantos, Judy Aschner, Keith Barrington, Beau Batton, Daniel Batton, Siri Fuglem Berg, Brian Carter, Deborah Campbell, Felicia Cohn, Anne Drapkin Lyerly, Dan Ellsbury, Avroy Fanaroff, Jonathan Fanaroff, Kristy Fanaroff, Sophie Gravel, Marlyse Haward, Stefan Kutzsche, Neil Marlow, Martha Montello, Nathalie Maitre, Joshua T Morris, Odd G Paulsen, Trisha Prentice, Alan R Spitzer
For parents, the experience of having an infant in the NICU is often psychologically traumatic. No parent can be fully prepared for the extreme stress and range of emotions of caring for a critically ill newborn. As health care providers familiar with the NICU, we thought that we understood the impact of the NICU on parents. But we were not prepared to see the children in our own families as NICU patients. Here are some of the lessons our NICU experience has taught us. We offer these lessons in the hope of helping health professionals consider a balanced view of the NICU's impact on families...
September 2016: Pediatrics
https://www.readbyqxmd.com/read/27458943/trisomy-13-and-18-treatment-decisions-in-a-stable-gray-zone
#18
EDITORIAL
John D Lantos
No abstract text is available yet for this article.
July 26, 2016: JAMA: the Journal of the American Medical Association
https://www.readbyqxmd.com/read/27430711/university-of-pennsylvania-8th-annual-conference-on-statistical-issues-in-clinical-trials-pragmatic-clinical-trials-morning-panel
#19
Lori E Dodd, John D Lantos, José Pinheiro
No abstract text is available yet for this article.
October 2016: Clinical Trials: Journal of the Society for Clinical Trials
https://www.readbyqxmd.com/read/27385811/randomized-n-of-1-trials-quality-improvement-research-or-both
#20
Joyce P Samuel, Alyssa Burgart, Susan H Wootton, David Magnus, John D Lantos, Jon E Tyson
The regulatory demarcations between clinical research and quality improvement (QI) are ambiguous and controversial. Some projects that were undertaken as a form of QI were deemed by regulatory agencies to be research and thus to require institutional review board approval. In the era of personalized medicine, some physicians may ask some patients to participate in n-of-1 trials in an effort to personalize and optimize each patient's medical treatment. Should such activities be considered research, QI, or just excellent personalized medicine? Experts in research, research regulation, and bioethics analyze these issues...
August 2016: Pediatrics
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