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Children with medical complexity

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https://www.readbyqxmd.com/read/29785895/complexity-in-pediatric-primary-care
#1
Arwa Nasir, Laeth Nasir, Ariel Tarrell, David Finken, Amy Lacroix, Swetha Pinninti, Sheryl Pitner, Molly McCarthy
BACKGROUND: The management of patients in primary care is often complicated by the presence of multiple chronic conditions and psychosocial issues that increase the complexity of the encounter and have important impacts on care. There is a paucity of literature on this subject in the pediatric population. OBJECTIVES: The aim of this study was to quantify the burden of chronic conditions in pediatric primary care. METHODS: The problem lists of 3995 randomly selected patients from a community pediatric clinic and an academic hospital-based pediatric clinic in the same metropolitan area were analyzed for the presence and number of any chronic condition...
May 22, 2018: Primary Health Care Research & Development
https://www.readbyqxmd.com/read/29783825/-clinical-and-molecular-analysis-of-two-chinese-siblings-with-bloom-syndrome
#2
M L Wu, X M Wang, J Li, Y Ding, Y Chen, G Y Chang, J Wang, Y P Shen
Objective: To expand the knowledge of the clinical and molecular characteristics of the children with Bloom syndrome. Methods: Clinical data of two siblings with classic Bloom syndrome of Shanghai Children's Medical Center from January 2009 to June 2017 were obtained and analyzed. The DNA of peripheral blood was collected from two Bloom syndrome siblings and their parents during 2015. The mutations were detected with high-throughput sequencing by Illumina sequencing platform. Results: The two siblings (probands) visited our department for short stature and growth retardation, they had full-term normal delivery after normal pregnancy of their mother...
May 2, 2018: Zhonghua Er Ke za Zhi. Chinese Journal of Pediatrics
https://www.readbyqxmd.com/read/29779801/docosahexaenoic-acid-supplementation-for-children-with-attention-deficit-hyperactivity-disorder-a-comprehensive-review-of-the-evidence
#3
REVIEW
Renata Ramalho, Ana Colaço Pereira, Filipa Vicente, Paula Pereira
Attention deficit hyperactivity disorder (ADHD) is considered the most common behavioural disorder in school-age children. ADHD is a complex and multifactorial disorder characterised by a variety of symptoms, including concentration problems, excessive motor activity and impulsivity which interferes with execution of simple school tasks. Diagnosis has been essentially subjective, since no specific laboratory tests are available. However, ADHD remains overdiagnosed, probably due to social pressures for children to be successful in school from an early age, which leads parents to seek medical support...
June 2018: Clinical Nutrition ESPEN
https://www.readbyqxmd.com/read/29778122/provider-language-proficiency-and-decision-making-when-caring-for-limited-english-proficiency-children-and-families
#4
Yolanda N Evans, Sarah A Rafton, Eriberto Michel, Beth E Ebel
OBJECTIVE: To examine associations between self-assessed language ability and provision of clinical care without professional interpretation. METHODS: We conducted an anonymous web-based survey of pediatric residents at a large pediatric training program. Respondents self-rated their language ability, and then reported on their willingness to deliver clinical care without professional interpretation in standardized clinical scenarios. RESULTS: All pediatric residents completed the survey (n=81; 100%)...
June 2018: Journal of the National Medical Association
https://www.readbyqxmd.com/read/29775450/-congenital-megacalycosis-in-a-girl-with-unilateral-renal-agenesis
#5
Agnieszka Szmigielska, Grażyna Krzemień, Anna Zacharzewska, Teresa Dudek-Warchoł, Stanisław Warchoł
Renal agenesis occurs in pediatric population with the incidence 1:500- 2000 children. It is more often diagnosed in boys and on the left side of the body. Renal agenesis may be isolated or it may be a part of complex malformation syndrome. Megacalycosis is a very rare anomaly of urinary tract associated with abnormal structure of the kidney pyramids. AIM: The aim of the study was to present for the first time in the medical literature the case of a girl with unilateral renal agenesis and megacalycosis...
April 23, 2018: Polski Merkuriusz Lekarski: Organ Polskiego Towarzystwa Lekarskiego
https://www.readbyqxmd.com/read/29773698/protocol-for-the-validation-of-sensitivity-and-specificity-of-the-cow-s-milk-related-symptom-score-comiss-against-open-food-challenge-in-a-single-blinded-prospective-multicentre-trial-in-infants
#6
Yvan Vandenplas, Rajat Mukherjee, Christophe Dupont, Philippe Eigenmann, Arne Høst, Mikael Kuitunen, Carmen Ribes-Koninkx, Neil Shah, Hania Szajewska, Andrea von Berg, Ralf G Heine, Zheng-Yan Zhao
INTRODUCTION: The symptoms of cow's milk protein allergy (CMPA) in infancy can be non-specific which may delay a correct diagnosis and cause adverse clinical outcomes. The diagnosis of non-IgE-mediated CMPA is particularly complex as it involves a 2 to 4 week elimination diet followed by oral food challenge (OFC). The Cow's Milk-related Symptom Score (CoMiSS) is a clinical resource for primary healthcare providers which aims to increase awareness of CMPA symptoms to facilitate an earlier diagnosis...
May 17, 2018: BMJ Open
https://www.readbyqxmd.com/read/29773072/formal-procedure-to-facilitate-the-decision-to-withhold-or-withdraw-life-sustaining-interventions-in-a-neonatal-intensive-care-unit-a-seven-year-retrospective-study
#7
G Sorin, R Vialet, B Tosello
BACKGROUND: Neonatal deaths are often associated with the complex decision to limit or withdraw life-sustaining interventions (LSIs) rather than therapeutic impasses. Despite the existence of a law, significant disparities in clinical procedures remain. This study aimed to assess deaths occurring in a Neonatal Intensive Care Unit (NICU) and measure the impact of a traceable Limitation or Withdrawal of Active Treatment (LWAT) file on the treatment of these newborns. METHODS: In this monocentric retrospective study, we reviewed all consecutive neonatal deaths occurring during two three-year periods among patients in the NICU at the North Hospital of Marseille: cohort 1 (from 2009 to 2011 without the LWAT file) and cohort 2 (from 2013 to 2015 after introduction of the LWAT file)...
May 17, 2018: BMC Palliative Care
https://www.readbyqxmd.com/read/29766748/medical-cannabis-for-pediatric-moderate-to-severe-complex-motor-disorders
#8
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/29754433/unsung-heroes-flying-blind-a-metasynthesis-of-parents-experiences-of-caring-for-children-with-special-health-care-needs-at-home
#9
Carina Nygård, Anne Clancy
AIMS AND OBJECTIVES: To aggregate, synthesize and interpret qualitative research studies of parents' experiences of caring for a child with special health care needs at home. BACKGROUND: Advances in the field of medical and nursing science have ensured better survival rates for children with chronic illnesses. Many of these children have significant special health care needs. Today parents assume a caregiver role, undertaking tasks previously provided by nurses in hospitals...
May 13, 2018: Journal of Clinical Nursing
https://www.readbyqxmd.com/read/29754203/prospective-analysis-of-decision-making-during-joint-cardiology-cardiothoracic-conference-in-treatment-of-107-consecutive-children-with-congenital-heart-disease
#10
Sophie Duignan, Aedin Ryan, Dara O'Keeffe, Damien Kenny, Colin J McMahon
The complexity and potential biases involved in decision making have long been recognised and examined in both the aviation and business industries. More recently, the medical community have started to explore this concept and its particular importance in our field. Paediatric cardiology is a rapidly expanding field and for many of the conditions we treat, there is limited evidence available to support our decision-making. Variability exists within decision-making in paediatric cardiology and this may influence outcomes...
May 12, 2018: Pediatric Cardiology
https://www.readbyqxmd.com/read/29752972/urologic-phenotype-and-patterns-of-care-in-patients-with-megacystis-microcolon-intestinal-hypoperistalsis-syndrome-presenting-to-a-major-pediatric-transplantation-center
#11
Lee A Hugar, Rajeev Chaudhry, Thomas W Fuller, Glenn M Cannon, Francis X Schneck, Michael C Ost, Heidi A Stephany
OBJECTIVES: To describe the phenotype, referral pattern, and trends of urologic management for children with megacystis microcolon intestinal hypoperistalsis syndrome. METHODS: We performed a retrospective review of all patients with megacystis microcolon intestinal hypoperistalsis syndrome treated at a large tertiary children's medical center over a 14-year period. Our primary outcomes included the rate of urology referral, urodynamic characteristics of bladder function, and the proportion of patients managed with clean intermittent catheterization...
May 9, 2018: Urology
https://www.readbyqxmd.com/read/29752175/well-child-visits-of-medicaid-insured-children-with-medical-complexity
#12
Igor Shumskiy, Troy Richardson, Sumeet Brar, Matt Hall, Joanne Cox, Charis Crofton, Alon Peltz, Margaret Samuels-Kalow, Elizabeth R Alpern, Mark I Neuman, Jay G Berry
OBJECTIVE: Well-child visits (WCVs) help optimize children's health. We measured annual WCVs for children with medical complexity (CMC) and correlated WCVs with hospitalizations. STUDY DESIGN: This was a retrospective analysis of 93 121 CMC aged 1-18 years continuously enrolled in 10 state Medicaid programs in the Truven MarketScan Database between 2010 and 2014. CMC had a complex chronic condition or 3 or more chronic conditions of any complexity identified from International Classification of Diseases, Ninth Revision codes, and the use of 1 or more chronic medications...
May 8, 2018: Journal of Pediatrics
https://www.readbyqxmd.com/read/29751973/advancing-indigenous-primary-health-care-policy-in-alberta-canada
#13
Rita Henderson, Stephanie Montesanti, Lindsay Crowshoe, Charles Leduc
For Indigenous people worldwide, accessing Primary Health Care (PHC) services responsive to socio-cultural realities is challenging, with institutional inequities in healthcare and jurisdictional barriers encumbering patients, providers, and decision-makers. In the Canadian province of Alberta, appropriate Indigenous health promotion, disease prevention, and primary care health services are needed, though policy reform is hindered by complex networks and competing interests between: federal/provincial funders; reserve/urban contexts; medical/allied health professional priorities; and three Treaty territories each structuring fiduciary responsibilities of the Canadian government...
May 7, 2018: Health Policy
https://www.readbyqxmd.com/read/29732597/meeting-the-needs-of-young-adults-with-life-limiting-conditions-a-uk-survey-of-current-provision-and-future-challenges-for-hospices
#14
Katherine Knighting, Lucy Bray, Julia Downing, Andrew J Kirkcaldy, Tracy K Mitchell, Mary R O'Brien, Melissa Pilkington, Barbara A Jack
AIM: To seek views of UK children's and adult hospices on the availability and challenges of providing services for young adults with life-limiting conditions. BACKGROUND: Internationally there are a growing number of young adults with life-limiting conditions and/or complex needs which are degenerative, progressive and diverse and involve complex life-long symptom, medication management as well as palliative care. There are 55,721 young adults, aged 18-40 in England, which continues to increase...
May 6, 2018: Journal of Advanced Nursing
https://www.readbyqxmd.com/read/29731297/french-society-of-ent-sforl-guidelines-short-version-on-the-roles-of-the-various-treatment-options-in-childhood-obstructive-sleep-apnea-hypopnea-syndrome
#15
B Pateron, R Marianowski, P-J Monteyrol, V Couloigner, M Akkari, F Chalumeau, P Fayoux, N Leboulanger, P Franco, M Mondain
OBJECTIVE: The authors present the guidelines of the French Society of ENT and Head & Neck Surgery (SFORL) on the role of the ENT physician in childhood obstructive sleep apnea-hypopnea syndrome (OSAHS). This section of the guidelines concerns the roles of the various medical and surgical treatment options. METHOD: A multidisciplinary work-group was entrusted with a review of the scientific literature on the topic. Based on the retrieved articles and the group members' own experience, guidelines were drawn up, then read over by a reading group independent of the work-group...
May 3, 2018: European Annals of Otorhinolaryngology, Head and Neck Diseases
https://www.readbyqxmd.com/read/29728782/respiratory-syncytial-virus-prophylaxis-in-cystic-fibrosis-the-canadian-registry-of-palivizumab-data-2005-2016
#16
Ian Mitchell, S K Wong, B Paes, M Ruff, C Bjornson, A Li, K L Lanctôt
Respiratory syncytial virus (RSV) may cause severe illness in cystic fibrosis (CF) children, but recommendations vary on prophylaxis. CARESS is a prospective registry of children who received palivizumab in 32 Canadian sites from 2005 to 2016. Demographic data were collected at enrollment and respiratory illness-related events recorded monthly. We reviewed respiratory illness hospitalization (RIH) and RSV hospitalization (RSVH) in CF children aged < 24 months versus those prophylaxed for standard indications (SI; prematurity, chronic lung disease [CLD] and congenital heart disease [CHD]), and complex medical disorders (CM)...
May 4, 2018: European Journal of Clinical Microbiology & Infectious Diseases
https://www.readbyqxmd.com/read/29726634/successful-exclusion-of-an-aortic-aneurysm-with-a-novel-ptfe-tube-covered-cobalt-chromium-stent-in-a-pediatric-patient-with-native-coarctation-of-the-aorta
#17
Johannes Nordmeyer, Peter Kramer, Felix Berger, Stephan Schubert
Treatment of aneurysmal lesions in the context of coarctation of the aorta (CoA) is a challenging task and these lesions are rare in children. An 11-year-old boy was incidentally diagnosed with native CoA and concomitant complex aneurysmal lesions during medical check-up for arterial hypertension. Pre-catheterization imaging was performed with computed tomography (CT), which showed a mild CoA and two native aneurysms that were juxtaposed to the origin of the left subclavian artery. For planning and guidance of the catheter procedure, image fusion software was used with an overlay from pre-registered three-dimensional reconstruction images on live fluoroscopy...
May 4, 2018: Catheterization and Cardiovascular Interventions
https://www.readbyqxmd.com/read/29725383/therapeutic-effect-of-radiofrequency-ablation-on-children-with-supraventricular-tachycardia-and-the-risk-factors-for-postoperative-recurrence
#18
Chunli Li, Libo Jia, Zhenzhou Wang, Ling Niu, Xinjiang An
The present study investigated the therapeutic effect of radiofrequency ablation on children with supraventricular tachycardia (SVT), and explored the risk factors for postoperative recurrence. A total of 312 patients with pediatric SVT were selected in the Affiliated Children's Hospital of Xuzhou Medical University from April, 2011 to March, 2017. All the patients were subjected to radiofrequency ablation, and clinical data were retrospectively analyzed. Tilt table test was performed before and after treatment, and heart rate, systolic and diastolic blood pressure before and after treatment were compared...
May 2018: Experimental and Therapeutic Medicine
https://www.readbyqxmd.com/read/29720452/arginine-vasopressin-in-cerebrospinal-fluid-is-a-marker-of-sociality-in-nonhuman-primates
#19
Karen J Parker, Joseph P Garner, Ozge Oztan, Erna R Tarara, Jiang Li, Valentina Sclafani, Laura A Del Rosso, Katie Chun, Sean W Berquist, Michael G Chez, Sonia Partap, Antonio Y Hardan, Elliott H Sherr, John P Capitanio
Autism spectrum disorder (ASD) is a neurodevelopmental condition characterized by core social impairments. ASD remains poorly understood because of the difficulty in studying disease biology directly in patients and the reliance on mouse models that lack clinically relevant, complex social cognition abilities. We use ethological observations in rhesus macaques to identify male monkeys with naturally occurring low sociality. These monkeys showed differences in specific neuropeptide and kinase signaling pathways compared to socially competent male monkeys...
May 2, 2018: Science Translational Medicine
https://www.readbyqxmd.com/read/29719986/linking-the-medical-and-educational-home-to-support-children-with-autism-spectrum-disorder-practice-recommendations
#20
Jeffrey D Shahidullah, Gazi Azad, Katherine R Mezher, Maryellen Brunson McClain, Laura Lee McIntyre
Children with autism spectrum disorder (ASD) present with complex medical problems that are often exacerbated by a range of other intellectual and psychiatric comorbidities. These children receive care for their physical and mental health from a range of providers within numerous child-serving systems, including their primary care clinic, school, and the home and community. Given the longitudinal nature in which care is provided for this chronic disorder, it is particularly necessary for services and providers to coordinate their care to ensure optimal efficiency and effectiveness...
May 1, 2018: Clinical Pediatrics
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