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Children with medical complexity

Marina Flotats-Bastardas, Daniel Ebrahimi-Fakhari, Ludwig Gortner, Martin Poryo, Michael Zemlin, Alfons Macaya-Ruiz, Sascha Meyer
Tuberous sclerosis complex (TSC) is a genetic disease with a significant morbidity and mortality. We conducted a retrospective analysis of two cohorts (Vall d'Hebron University Hospital [HVH], Barcelona, Spain, 1982-2015, and at Saarland University Medical Center [UKS], Homburg, Germany, 1998-2015) to assess prevalence and treatment of TSC associated manifestations and to evaluate if the follow-up was in line with published recommendations. This was considered if more than 15% of patients did not receive adequate examination with regard to potential organ involvement...
March 20, 2018: Neuropediatrics
Megan E Narad, Megan Kennelly, Nanhua Zhang, Shari L Wade, Keith Owen Yeates, H Gerry Taylor, Jeffery N Epstein, Brad G Kurowski
Importance: After traumatic brain injury (TBI), children often experience impairment when faced with tasks and situations of increasing complexity. Studies have failed to consider the potential for attention problems to develop many years after TBI or factors that may predict the development of secondary attention-deficit/hyperactivity disorder (SADHD). Understanding these patterns will aid in timely identification of clinically significant problems and appropriate initiation of treatment with the hope of limiting additional functional impairment...
March 19, 2018: JAMA Pediatrics
Paul C Helm, Sebastian Kempert, Marc-André Körten, Wiebke Lesch, Katharina Specht, Ulrike M M Bauer
BACKGROUND: Children and adolescents with congenital heart disease (CHD) and their families require qualified combined medical and psychosocial information, care, and counseling. This study aimed to analyze CHD patients' and parents' perception of disease-specific knowledge, state of health, and impairments experienced in everyday life, as well as factors influencing these perceptions. MATERIALS AND METHODS: Analyses were based on a survey among patients/parents recruited via the German National Register for Congenital Heart Defects (NRCHD)...
January 25, 2018: Congenital Heart Disease
Layla Parast, Q Burkhart, Courtney Gidengil, Eric C Schneider, Rita Mangione-Smith, K Casey Lion, Elizabeth A McGlynn, Adam Carle, Maria T Britto, Marc N Elliott
OBJECTIVES: To validate new caregiver-reported quality measures assessing care coordination services for children with medical complexity (CMC). METHODS: A cross sectional analysis of the associations between 20 newly developed Family Experiences with Coordination of Care (FECC) quality measures and three validation measures among 1209 caregivers who responded to a telephone or mailed survey between August-November 2013 in Minnesota and Washington. Validation measures included an access composite, a provider rating item, and a care coordination outcome measure, all derived from Consumer Assessments of Healthcare Providers and Systems (CAHPS© ) survey items...
March 14, 2018: Academic Pediatrics
Louise Ramsden, Martin Patrick McColgan, Thomas Rossor, Anne Greenough, Simon J Clark
Studies of adult patients have demonstrated that weekend admissions compared with weekday admissions had a significantly higher hospital mortality rate. We have reviewed the literature to determine if the timing of admission, for example, weekend or weekday, influenced mortality and morbidity in children. Seventeen studies reported the effect of timing of admission on mortality, and only four studies demonstrated an increase in those admitted at the weekend. Meta-analysis of the results of 15 of the studies demonstrated there was no significant weekend effect...
March 15, 2018: Archives of Disease in Childhood
Amit Acharyya, Pranit N Jadhav, Valentina Bono, Koushik Maharatna, Ganesh R Naik
BACKGROUND AND OBJECTIVE: EEG is a non-invasive tool for neuro-developmental disorder diagnosis and treatment. However, EEG signal is mixed with other biological signals including Ocular and Muscular artifacts making it difficult to extract the diagnostic features. Therefore, the contaminated EEG channels are often discarded by the medical practitioners which may result in less accurate diagnosis. Many existing methods require reference electrodes, which will create discomfort to the patient/children and cause hindrance to the diagnosis of the neuro-developmental disorder and Brain Computer Interface in the pervasive environment...
May 2018: Computer Methods and Programs in Biomedicine
Amber Hoffman, Ingrid A Larson
It can be difficult to assist children with medical complexities (CMC) in maintaining wellness outside of hospital and emergency department settings. This growing population, with high use of medical technology and specialty care, has created a challenge for community providers who may infrequently care for children with these rare disorders and needs. CMCs have increased hospitalization rates and emergency care use. It is not realistic to believe that emergency health providers will know how to manage every type of CMC when they present for emergency care...
March 1, 2018: Pediatric Annals
Jijun Xu, Christopher Herndon, Samantha Anderson, Philip Getson, Victor Foorsov, Peter Moskovitz, R Norm Harden
Objective: To find and reach a consensus on the usage of ketamine in the treatment of complex regional pain syndrome and to determine a reference protocol for future studies. Design: Three hundred fifty-one medical professionals participated in our survey on practice procedures, with 104 respondents providing information on their usage of ketamine for treating the pain associated with complex regional pain syndrome. Respondents answered questions about inpatient treatment, outpatient treatment, children vs adults, safety, and basic demographic information...
March 9, 2018: Pain Medicine: the Official Journal of the American Academy of Pain Medicine
Ann H Tilton
PURPOSE OF THE REVIEW: The goal of the article is to describe a systematic approach through core principles and steps for the transition of the patient with a neurological disorder to the adult model of care, to provide steps and principles to help receiving providers successfully integrate the patient into their practice, and to discuss cultural, systemic, and discipline-based barriers to transition. RECENT FINDING: The literature has expanded rapidly. The recent publications help define the barriers to the process and are currently exploring the best methods to evaluate readiness, needs, barriers, and develop solutions for best practices...
March 10, 2018: Current Neurology and Neuroscience Reports
Chrissy Frances Bishop, Neil Small, Roger Parslow, Brian Kelly
OBJECTIVES: Congenital anomaly (CA) are a leading cause of disease, death and disability for children throughout the world. Many have complex and varying healthcare needs which are not well understood. Our aim was to analyse the healthcare needs of children with CA and examine how that healthcare is delivered. DESIGN: Secondary analysis of observational data from the Born in Bradford study, a large prospective birth cohort, linked to primary care data and hospital episode statistics...
March 9, 2018: BMJ Open
Heather A Feldner, Samuel W Logan, James C Galloway
AIM: Rehabilitation professionals are increasingly recognizing mobility as a basic human right and endorsing the efficacy of early powered mobility for children with mobility impairments to foster independence, promote socialization with peers and facilitate participation in family and community life. However, the relationship between mobility and technology provision, when considered in the context of lived experiences of children with mobility impairments and their families, is complex and understudied...
March 9, 2018: Disability and Rehabilitation. Assistive Technology
Catherine E Oldenburg, Philippe J Guerin, Fatou Berthé, Rebecca F Grais, Sheila Isanaka
Background: The relationship between malaria infection and nutritional status is complex and previous studies suggest malaria may increase the incidence and severity of malnutrition while malnutrition may increase the risk of malaria infection. Here, we report bi-directional associations between malaria and nutritional status among children with uncomplicated severe acute malnutrition (SAM). Methods: The present study is a secondary analysis of a randomized controlled trial for the treatment of uncomplicated SAM in Niger...
March 7, 2018: Clinical Infectious Diseases: An Official Publication of the Infectious Diseases Society of America
Vita Boyar
PURPOSE: The purpose of this study was to report on our experience with a portable, single-use negative pressure wound therapy device used in combination with activated active Leptospermum honey (ALH) in the treatment of colonized or infected, dehisced, thoracic wounds in neonates with complex congenital heart disease. DESIGN: Retrospective, descriptive study. SUBJECTS AND SETTING: We reviewed medical records of 18 neonates and reported on findings from 11; the remaining 7 were not included secondary to incomplete records, transfer to a different institution prior to wound healing, or death...
March 2018: Journal of Wound, Ostomy, and Continence Nursing
Nina M Dadlez, Gabriela M Bisono, Camille Y Williams, Susan L Rosenthal, Patricia A Hametz
OBJECTIVES: Family-centered care promotes parental engagement in medical decision-making for hospitalized children. Little is understood about parental preferences and factors influencing the desire to involve extended family in decision-making. We explored parent and family member interest in participation in medical decision-making. METHODS: Parents of hospitalized children ≤7 years old admitted to the inpatient service were interviewed regarding preferences for self-, other parent, and extended family involvement in decision-making...
March 7, 2018: Hospital Pediatrics
Vini Singh, Sadagopan Krishnan
Diabetes is a complex immune disorder that requires extensive medical care beyond glycemic control. Recently, the prevalence of diabetes, particularly type 1 diabetes (T1D), has significantly increased from 5% to 10%, and this has affected the health-associated complication incidences in children and adults. The 2012 statistics by the American Diabetes Association reported that 29.1 million Americans (9.3% of the population) had diabetes, and 86 million Americans (age ≥20 years, an increase from 79 million in 2010) had prediabetes...
March 7, 2018: Analyst
Gulraiz Chaudry, Anna P Lillis, Raja Shaikh, Horacio M Padua, Rush H Chewning, Ahmad I Alomari
PURPOSE: To characterize anatomy of congenital arterioportal fistulas (CAPF) and correlate this with technique and outcomes of transcatheter embolization (TCE). MATERIALS AND METHODS: Retrospective review was conducted of children with CAPF that underwent TCE in a 10-year period. Medical records, imaging and procedure details were reviewed. TCE was performed via transarterial (n = 5), portal (n = 5) or patent ductus venosus (n = 1) approach. Embolic agents used were coils (n = 10), Onyx (n = 1) and Amplatzer septal occluder (n = 1)...
March 6, 2018: Cardiovascular and Interventional Radiology
Jarle Jortveit, Jakob Klcovansky, Leif Eskedal, Sigurd Birkeland, Gaute Døhlen, Henrik Holmstrøm
OBJECTIVES: Congenital heart defects (CHD) are the most common birth defects worldwide and are an important cause of morbidity and early death. A significant number of deaths occur among patients with infections. CHDs predispose to the development of infective endocarditis (IE) and represent a risk factor for increased mortality due to IE. The aim of this study was to investigate the occurrence and outcomes of IE in children and adolescents with CHDs. METHODS: Data on all children with CHD and IE born in Norway between 1994 and 2016 were retrieved from the Oslo University Hospital's Clinical Registry for Congenital Heart Defects...
March 6, 2018: Archives of Disease in Childhood
K R Amlaiev, M G Gevandova, Kh T Dakhkilgova
The article presents analysis of social economic health determinants of parents of children with oncologic diseases. The evaluation of their satisfaction with accessibility of qualitative medical care was carried out. The questionnaire covered issues concerning medical social aspects of health and satisfaction with quality of medical care. the sampling included 284 parents of children with oncologic diseases receiving treatment in the profile departments of Krasnodar, Stavropol, Volgograd, Makhachkala, Grozny, Cherkessk, Nalchik and Astrakhan in August-September 2015...
July 2017: Problemy Sot︠s︡ialʹnoĭ Gigieny, Zdravookhranenii︠a︡ i Istorii Medit︠s︡iny
Jason M Glanz, Sophia R Newcomer, Matthew F Daley, Frank DeStefano, Holly C Groom, Michael L Jackson, Bruno J Lewin, Natalie L McCarthy, David L McClure, Komal J Narwaney, James D Nordin, Ousseny Zerbo
Importance: Some parents are concerned that multiple vaccines in early childhood could weaken their child's immune system. Biological data suggest that increased vaccine antigen exposure could increase the risk for infections not targeted by vaccines. Objective: To examine estimated cumulative vaccine antigen exposure through the first 23 months of life in children with and without non-vaccine-targeted infections from 24 through 47 months of age. Design, Setting, and Participants: A nested case-control study was conducted in 6 US health care organizations participating in the Vaccine Safety Datalink...
March 6, 2018: JAMA: the Journal of the American Medical Association
Savithri Nageswaran, Shannon L Golden
Children with medical complexity receive care from many healthcare providers including home healthcare nurses. The objective of our study, based on a conceptual framework, was to describe the relationships between parents/caregivers of children with medical complexity and home healthcare nurses caring for these children. We collected qualitative data in 20 semistructured in-depth interviews (15 English, 5 Spanish) with 26 primary caregivers of children with medical complexity, and 4 focus groups of 18 home healthcare nurses inquiring about their experiences about home healthcare nursing services for children with medical complexity...
March 2018: Home Healthcare Now
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