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https://www.readbyqxmd.com/read/27906588/fertility-preservation-in-pediatric-and-adolescent-oncology-patients-the-decision-making-process-of-parents
#1
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
#2
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
https://www.readbyqxmd.com/read/27884013/guidelines-for-growth-hormone-and-insulin-like-growth-factor-i-treatment-in-children-and-adolescents-growth-hormone-deficiency-idiopathic-short-stature-and-primary-insulin-like-growth-factor-i-deficiency
#3
Adda Grimberg, Sara A DiVall, Constantin Polychronakos, David B Allen, Laurie E Cohen, Jose Bernardo Quintos, Wilma C Rossi, Chris Feudtner, Mohammad Hassan Murad
BACKGROUND/AIMS: On behalf of the Drug and Therapeutics, and Ethics Committees of the Pediatric Endocrine Society, we sought to update the guidelines published in 2003 on the use of growth hormone (GH). Because idiopathic short stature (ISS) remains a controversial indication, and diagnostic challenges often blur the distinction between ISS, GH deficiency (GHD), and primary IGF-I deficiency (PIGFD), we focused on these three diagnoses, thereby adding recombinant IGF-I therapy to the GH guidelines for the first time...
November 25, 2016: Hormone Research in Pædiatrics
https://www.readbyqxmd.com/read/27881813/perspectives-of-us-and-australian-hand-therapists-about-pediatric-hand-transplantation
#4
Nitin Mukesh, Katrina A Bramstedt
INTRODUCTION: Pediatric hand transplantation (PHT), an investigational therapy, was recently performed in the United States. RESEARCH QUESTIONS: Perspectives of hand therapists about PHT patient selection (inclusion and exclusion criteria), team configuration, patient assent, and patient compliance were explored. DESIGN: Quantitative survey. We used a research ethics committee-approved 18-question e-link anonymous questionnaire to survey members of the American Society of Hand Therapists and the Australian (AU) Hand Therapy Association for their perspectives on PHT...
November 23, 2016: Progress in Transplantation
https://www.readbyqxmd.com/read/27879541/ethical-barriers-in-adolescent-oncofertility-counseling
#5
Daniel V Runco, Julia F Taylor, Paul R Helft
Adult survivors of pediatric cancers are at substantial risk for infertility. Oncofertility is an emerging field in medicine that has focused on the fertility preservation of these patients. As the field continues to develop, there are several areas in which our practice has improved. However, several ethical concerns still exist involving beneficence, nonmaleficence, informed consent, adolescent assent, and posthumous use of reproductive tissues. Because the field is still developing, great disparities exist in available options depending on age, ability to pay, and geographic location...
November 22, 2016: Journal of Pediatric Hematology/oncology
https://www.readbyqxmd.com/read/27863847/parental-attitudes-about-placebo-use-in-children
#6
Vanda Faria, Joe Kossowsky, Mike P Petkov, Ted J Kaptchuk, Irving Kirsch, Alyssa Lebel, David Borsook
OBJECTIVE: To assess parental attitudes regarding placebo use in pediatric randomized controlled trials and clinical care. STUDY DESIGN: Parents with children under age 18 years living in the US completed and submitted an online survey between September and November 2014. RESULTS: Among all 1300 participants, 1000 (76.9%; 538 mothers and 462 fathers) met the study inclusion criteria. The majority of surveyed parents considered the use of placebos acceptable in some pediatric care situations (86%) and some pediatric trials (91...
November 9, 2016: Journal of Pediatrics
https://www.readbyqxmd.com/read/27862980/using-decision-modeling-to-guide-drug-allocation-during-a-shortage
#7
Heidi V Russell, M Brooke Bernhardt, Stacey Berg
BACKGROUND: Drug shortages require clinical teams to decide how to allocate drugs in limited supply among their patients. Ethical frameworks are invaluable for promoting rational approaches to drug distribution, but gaps remain between ethical theory and clinical application. The goal of this work was to explore how decision modeling could supplement ethical frameworks to inform drug distribution from the perspective of a clinical team. PROCEDURE: We created a hypothetical pediatric oncology clinic with a limited supply of 50,000 mg of methotrexate (MTX) and 21 patients due for treatment on one of six regimens...
November 15, 2016: Pediatric Blood & Cancer
https://www.readbyqxmd.com/read/27861447/diagnostic-accuracy-of-neuromonitoring-for-identification-of-new-neurologic-deficits-in-pediatric-spinal-fusion-surgery
#8
Victor M Neira, Kamyar Ghaffari, Srinivas Bulusu, Paul J Moroz, James G Jarvis, Nicholas Barrowman, William Splinter
BACKGROUND: Intraoperative neuromonitoring (IONM) modalities, transcranial motor-evoked potentials (TcMEPs), and somatosensory-evoked potentials (SSEPs) are accepted methods to identify impending spinal cord injury during spinal fusion surgery. Debate exists over sensitivity and specificity of these modalities. Our purpose was to measure the incidence of new neurologic deficits (NNDs) and estimate sensitivity and specificity of IONM modalities. METHODS: Institutional Ethics Board approval was obtained to review charts of patients younger than 22 years undergoing scoliosis surgery from 2007 to 2014 retrospectively...
December 2016: Anesthesia and Analgesia
https://www.readbyqxmd.com/read/27858187/duodeno-duodenostomy-or-duodeno-jejunostomy-for-duodenal-atresia-is-one-repair-better-than-the-other
#9
Augusto Zani, Jung-Pin Benjamin Yeh, Sebastian K King, Priscilla P L Chiu, Paul W Wales
PURPOSE: The surgical management of neonates with duodenal atresia (DA) involves re-establishment of intestinal continuity, either by duodeno-duodenostomy (DD) or by duodeno-jejunostomy (DJ). Although the majority of pediatric surgeons perform DD repair preferentially, we aimed to analyze the outcome of DA neonates treated with either surgical technique. METHODS: Following ethical approval (REB:1000047737), we retrospectively reviewed the charts of all patients who underwent DA repair between 2004 and 2014...
November 17, 2016: Pediatric Surgery International
https://www.readbyqxmd.com/read/27843858/clinical-study-of-burn-patients-requiring-admission-a-single-center-experience-at-north-eastern-indira-gandhi-regional-institute-of-health-and-medical-sciences
#10
Donkupar Khongwar, Ranendra Hajong, Jyoutishman Saikia, Noor Topno, Arup J Baruah, Ojing Komut
BACKGROUND: Although burns are a major problem in health care, a lot of the variation in risk factors exists from region to region which if uncovered correctly could help take effective prevention measures. AIMS AND OBJECTIVES: To assess the 3-year (January 2012 to January 2015) epidemiology of burn injuries admitted to our hospital (primary objective) and to find areas of improvement in burn care (secondary objective). MATERIALS AND METHODS: After obtaining ethical approval data were obtained from the medical record section regarding age, sex, residence, occupation, marital status, socioeconomic status, dates of admission and discharge, circumstances regarding the place, intent, cause, and source of heat...
April 2016: Journal of Family Medicine and Primary Care
https://www.readbyqxmd.com/read/27842861/-information-and-consent-forms-for-hematopoietic-stem-cell-transplantation-donors-and-recipients-guidelines-from-the-franchophone-society-of-bone-marrow-transplantation-and-cellular-therapy-sfgm-tc
#11
Bénédicte Bruno, Jean-Baptiste Thibert, Nelly Bancillon, Anna Desbos, Abir Fawaz, Isabelle Fournier, Carole Genty, Dominique Issarni, Sandrine Leveille, Christelle Premel, Alice Polomeni, Myriam Renault, Sylvie Tarillon, Anne Wallart, Ibrahim Yakoub-Agha, Dominique Bordessoule
Within the context of the SFGM-TC's 6th workshop series on the harmonization of clinical practices, our workshop proposes a standardization of the informed consent process for hematopoietic stem cell donors and recipients leading up to an autologous or allogenic transplantation. All informed consent was for bone marrow or peripheral stem cell donors, and mononuclear/lymphocyte donors according to usual procedures. The informed consent for autologous and allogenic related or unrelated adults and pediatric transplantation patients have been included...
November 2016: Bulletin du Cancer
https://www.readbyqxmd.com/read/27816208/absent-ileocecal-valve-predicts-the-need-for-repeated-step-in-children
#12
Tomas Wester, Helene Engstrand Lilja, Pernilla Stenström, Mikko Pakarinen
BACKGROUND: Serial transverse enteroplasty facilitates weaning from parenteral support in selected patients with short bowel syndrome, although repeated procedure is frequently required. Our aim was to evaluate the outcome of a series of patients after serial transverse enteroplasty and define predictors of repeated serial transverse enteroplasty and weaning off parenteral support. METHODS: All children who underwent serial transverse enteroplasty at 4 Nordic pediatric surgery centers from 2004-2015 were included in this observational study...
November 3, 2016: Surgery
https://www.readbyqxmd.com/read/27815753/pediatric-ethics-and-communication-excellence-peace-rounds-decreasing-moral-distress-and-patient-length-of-stay-in-the-picu
#13
Lucia Wocial, Veda Ackerman, Brian Leland, Brian Benneyworth, Vinit Patel, Yan Tong, Mara Nitu
This paper describes a practice innovation: the addition of formal weekly discussions of patients with prolonged PICU stay to reduce healthcare providers' moral distress and decrease length of stay for patients with life-threatening illnesses. We evaluated the innovation using a pre/post intervention design measuring provider moral distress and comparing patient outcomes using retrospective historical controls. Physicians and nurses on staff in our pediatric intensive care unit in a quaternary care children's hospital participated in the evaluation...
November 4, 2016: HEC Forum: An Interdisciplinary Journal on Hospitals' Ethical and Legal Issues
https://www.readbyqxmd.com/read/27803074/diagnostic-uncertainty-and-ethical-dilemmas-in-medically-complex-pediatric-patients-and-psychiatric-boarders
#14
Kelly Gardner, Stephanie Ruest, Brian Cummings
No abstract text is available yet for this article.
November 2016: Hospital Pediatrics
https://www.readbyqxmd.com/read/27782890/pediatric-small-bowel-transplantation-a-single-center-experience-from-turkey
#15
Cem Tuğmen, Maşallah Baran, İsmail Sert, Ayşe Berna Anıl, Eyüp Kebapçı, Sait Murat Doğan, Selçuk Kılınç, Gaye Aydın, Ayşe Gülden Diniz, Mustafa Ölmez, İbrahim Pirim, Cezmi Karaca
BACKGROUND/AIMS: Small bowel transplantation (SBTx) is a treatment option for patients with serious parenteral nutrition-related problems in intestinal failure. İzmir Tepecik Training Research Hospital Organ Transplantation Center is still the only pediatric intestinal transplant center in Turkey. MATERIAL AND METHODS: This study was approved by the local ethics committee. Patients' data were analyzed from the medical charts and the hospital digital database. Seven isolated SBTxs were performed in six children between 2010 and 2016...
September 2016: Turkish Journal of Gastroenterology: the Official Journal of Turkish Society of Gastroenterology
https://www.readbyqxmd.com/read/27780857/enrolling-adolescents-in-disease-target-appropriate-adult-oncology-clinical-trials-of-investigational-agents
#16
Meredith K Chuk, Yeruk Mulugeta, Michelle Roth-Cline, Nitin Mehrotra, Gregory H Reaman
The enrollment of adolescents with cancer in clinical trials is much lower than younger pediatric patients. For adolescents with "adult-type" cancers, lack of access to relevant trials is cited as one of the reasons for this discrepancy. Adolescents are generally not eligible for enrollment on adult oncology trials, and initial pediatric trials for many drugs are conducted years later, often after the drug is approved. As a result, accrual of adolescents to these trials may be slow due to off-label use, prospectively collected safety and efficacy data is lacking at the time of initial approval, and, most importantly, these adolescents have delayed access to effective therapies...
October 25, 2016: Clinical Cancer Research: An Official Journal of the American Association for Cancer Research
https://www.readbyqxmd.com/read/27779449/anatomic-insights-into-disrupted-small-world-networks-in-pediatric-posttraumatic-stress-disorder
#17
Xueling Suo, Du Lei, Fuqin Chen, Min Wu, Lei Li, Ling Sun, Xiaoli Wei, Hongyan Zhu, Lingjiang Li, Graham J Kemp, Qiyong Gong
Purpose To use diffusion-tensor (DT) imaging and graph theory approaches to explore the brain structural connectome in pediatric posttraumatic stress disorder (PTSD). Materials and Methods This study was approved by the relevant research ethics committee, and all participants' parents or guardians provided informed consent. Twenty-four pediatric patients with PTSD and 23 control subjects exposed to trauma but without PTSD were recruited after the 2008 Sichuan earthquake. The structural connectome was constructed by using DT imaging tractography and thresholding the mean fractional anisotropy of 90 brain regions to yield 90 × 90 partial correlation matrixes...
October 25, 2016: Radiology
https://www.readbyqxmd.com/read/27760451/-pulmonary-hypertension-due-to-chronic-lung-disease-recommendations-of-the-cologne-consensus-conference-2016
#18
H Olschewski, J Behr, H Bremer, M Claussen, P Douschan, M Halank, M Held, M M Hoeper, S Holt, H Klose, S Krüger, T J Lange, F Reichenberger, D Skowasch, S Ulrich, H Wilkens, W Seeger
The 2015 European Guidelines on Pulmonary Hypertension did not cover only pulmonary arterial hypertension (PAH) but also some aspects of pulmonary hypertension (PH) associated with chronic lung disease. The European Guidelines point out that the drugs currently used to treat patients with PAH (prostanoids, endothelin receptor antagonists, phosphodiesterase-5 inhibitors, sGC stimulators) have not been sufficiently investigated in other forms of PH. Therefore, the European Guidelines do not recommend the use of these drugs in patients with chronic lung disease and PH...
October 2016: Deutsche Medizinische Wochenschrift
https://www.readbyqxmd.com/read/27738765/orphan-drug-policies-and-use-in-pediatric-nephrology
#19
EDITORIAL
Diana Karpman, Peter Höglund
Orphan drugs designed to treat rare diseases are often overpriced per patient. Novel treatments are sometimes even more expensive for patients with ultra-rare diseases, in part due to the limited number of patients. Pharmaceutical companies that develop a patented life-saving drug are in a position to charge a very high price, which, at best, may enable these companies to further develop drugs for use in rare disease. However, is there a limit to how much a life-saving drug should cost annually per patient? Government interventions and regulations may opt to withhold a life-saving drug solely due to its high price and cost-effectiveness...
January 2017: Pediatric Nephrology: Journal of the International Pediatric Nephrology Association
https://www.readbyqxmd.com/read/27733160/personalized-assent-for-pediatric-biobanks
#20
Noor A A Giesbertz, Karen Melham, Jane Kaye, Johannes J M van Delden, Annelien L Bredenoord
Pediatric biobanking is considered important for generating biomedical knowledge and improving (pediatric) health care. However, the inclusion of children's samples in biobanks involves specific ethical issues. One of the main concerns is how to appropriately engage children in the consent procedure. We suggest that children should be involved through a personalized assent procedure, which means that both the content and the process of assent are adjusted to the individual child. In this paper we provide guidance on how to put personalized assent into pediatric biobanking practice and consider both the content and process of personalized assent...
October 12, 2016: BMC Medical Ethics
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