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Pediatric disability

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https://www.readbyqxmd.com/read/27933693/heart-transplantation-in-children-with-intellectual-disability-an-analysis-of-the-unos-database
#1
Alexander N Goel, Amit Iyengar, Kenneth Schowengerdt, Andrew C Fiore, Charles B Huddleston
Heart transplantation in children with intellectual disability (ID) is an issue of debate due to the shortage of available donor organs. We sought to perform the first large-scale retrospective cohort study describing the prevalence and outcomes of heart transplantation in this population. The United Network of Organ Sharing database was queried from 2008 to 2015 for pediatric patients (age <19 years) receiving first, isolated heart transplant. Recipients were divided into three subgroups: definite ID, probable ID, and no ID...
December 9, 2016: Pediatric Transplantation
https://www.readbyqxmd.com/read/27919503/binocular-low-contrast-letter-acuity-and-the-symbol-digit-modalities-test-improve-the-ability-of-the-multiple-sclerosis-functional-composite-to-predict-disease-in-pediatric-multiple-sclerosis
#2
Amy T Waldman, Salim Chahin, Amy M Lavery, Geraldine Liu, Brenda L Banwell, Grant T Liu, Laura J Balcer
BACKGROUND: Outcome measures to capture disability, such as the Multiple Sclerosis Functional Composite (MSFC), were developed to enhance outcome measurements for clinical trials in adults with multiple sclerosis (MS). The MSFC initially included three components: a timed 25-foot walk [T25FW], 9-hole peg test [9HPT], and the Paced Auditory Serial Addition Task [PASAT]. Modifications to the original MSFC, such as adding binocular low-contrast letter acuity (LCLA) or substituting the symbol digit modalities test (SDMT) for the PASAT, improved the capacity to capture neurologic impairment in adults...
November 2016: Multiple Sclerosis and related Disorders
https://www.readbyqxmd.com/read/27919265/fatigue-in-patients-with-juvenile-idiopathic-arthritis-relationship-to-perceived-health-physical-health-self-efficacy-and-participation
#3
Wineke Armbrust, Otto H T M Lelieveld, Jolanda Tuinstra, Nico M Wulffraat, G J F Joyce Bos, Jeannette Cappon, Marion A J van Rossum, Pieter J J Sauer, Mariët Hagedoorn
BACKGROUND: Fatigue is common in patients with JIA and affects daily life negatively. We assessed the presence and severity of fatigue in patients with JIA, including factors presumed associated with fatigue (e.g., disease activity, disability, pain, physical activity, exercise capacity, and self-efficacy), and whether fatigue is related to participation in physical education classes, school attendance, and sports frequency. METHODS: The current study used baseline data of 80 patients with JIA (age 8-13) who participated in an intervention aimed at promoting physical activity...
December 6, 2016: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/27918444/mental-health-comorbidities-in-pediatric-chronic-pain-a-narrative-review-of-epidemiology-models-neurobiological-mechanisms-and-treatment
#4
REVIEW
Jillian Vinall, Maria Pavlova, Gordon J G Asmundson, Nivez Rasic, Melanie Noel
Chronic pain during childhood and adolescence can lead to persistent pain problems and mental health disorders into adulthood. Posttraumatic stress disorders and depressive and anxiety disorders are mental health conditions that co-occur at high rates in both adolescent and adult samples, and are linked to heightened impairment and disability. Comorbid chronic pain and psychopathology has been explained by the presence of shared neurobiology and mutually maintaining cognitive-affective and behavioral factors that lead to the development and/or maintenance of both conditions...
December 2, 2016: Children
https://www.readbyqxmd.com/read/27917595/societal-preferences-in-the-treatment-of-pediatric-medulloblastoma-balancing-risk-of-death-and-quality-of-life
#5
Amir Khakban, Tima Mohammadi, Larry D Lynd, Don Mabbott, Eric Bouffet, Louise Gastonguay, Zafar Zafari, David Malkin, Michael Taylor, Carlo A Marra
PURPOSE: Medulloblastoma is the most prevalent childhood brain cancer. Children with medulloblastoma typically receive a combination of surgery, radiation, and chemotherapy. The survival rate is high but survivors often have sequelae from radiotherapy of the entire developing brain and spinal cord. Ongoing genetic studies have suggested that decreasing the dose of radiation might be possible among children with favorable molecular variants; however, this may result in an increased disease recurrence...
December 4, 2016: Pediatric Blood & Cancer
https://www.readbyqxmd.com/read/27916884/a-broad-consideration-of-risk-factors-in-pediatric-chronic-pain-where-to-go-from-here
#6
REVIEW
Hannah N McKillop, Gerard A Banez
Pediatric chronic pain is a significant problem associated with substantial functional impairment. A variety of risk factors have been found to be associated with chronic pain in youth. The greatest amount of evidence appears to support that temperament, anxiety, depression, subjective experience of stress, passive coping strategies, sleep problems, other somatic-related problems, and parent and/or family factors are important variables. However, a great deal of this research focuses on a single risk factor or on multiple risk factors in isolation...
November 30, 2016: Children
https://www.readbyqxmd.com/read/27914152/pediatric-multiple-sclerosis-in-portugal-a-multicentre-study
#7
Ana Sofia Correia, Luís Augusto, Joana Meireles, Joana Pinto, Ana Paula Sousa
INTRODUCTION: Multiple sclerosis is most often diagnosed among young adults but less frequently it may present during childhood or adolescence. In Portugal, there has been only one previous single-center, pediatric multiple sclerosis study. The main objective was the evaluation of the demographic, clinical, laboratorial and neuroradiological characteristics of patients with pediatric-onset multiple sclerosis in Portugal. The secondary objectives were to compare the characteristics of childhood-onset multiple sclerosis and adolescent-onset multiple sclerosis and to characterize the treatments prescribed...
August 2016: Acta Médica Portuguesa
https://www.readbyqxmd.com/read/27909379/-it-is-an-eye-opener-that-there-is-a-relationship-between-rehabilitation-and-hiv-perspectives-of-physiotherapists-and-occupational-therapists-in-kenya-and-zambia-on-the-role-of-rehabilitation-with-adults-and-children-living-with-hiv
#8
Stephanie Nixon, Cathy Cameron, Margaret Mweshi, Esther Munalula Nkandu, Carlius Okidi, Stephen Tattle, Tammy Yates
Purpose: To present the perspectives of rehabilitation providers-physiotherapists and occupational therapists-in Kenya and Zambia on the role of rehabilitation in the care of adults and children living with HIV. Methods: This qualitative, interpretivist study was part of a broader project to adapt a Canadian e-module on HIV-related disability for rehabilitation providers in Sub-Saharan Africa (SSA). Focus groups, demographic questionnaires, and knowledge-attitude-belief surveys were conducted with rehabilitation providers in Kenya and Zambia...
2016: Physiotherapy Canada. Physiothérapie Canada
https://www.readbyqxmd.com/read/27893637/timing-of-presentation-of-pediatric-compartment-syndrome-and-its-microsurgical-implication-a-retrospective-review
#9
Natalia I Ziolkowski, Leanne Zive, Emily Ho, Ronald Zuker
BACKGROUND: Forearm compartment syndrome in the pediatric population can lead to severe functional disability. Although it is known that earlier presentation with decompression leads to better outcomes, it is not known when presentation post-injury leads to significant loss of function requiring microsurgical intervention. AIM: To describe the rate of microsurgical reconstruction after forearm compartment syndrome in pediatric patients as related to timing of presentation...
November 21, 2016: Plastic and Reconstructive Surgery
https://www.readbyqxmd.com/read/27890788/genetic-testing-among-spanish-pediatric-neurologists-knowledge-attitudes-and-practices
#10
J Domínguez-Carral, J López-Pisón, A Macaya, M Bueno Campaña, M A García-Pérez, D Natera-de Benito
Advances in genetic testing applied to child neurology have enabled the development of genetic tests with greater sensitivity in elucidating an etiologic diagnosis for common neurological conditions. The objective of the current study was to examine child neurologists' perspectives and insights into genetic testing. We surveyed 118 Spanish child neurologists, exploring their knowledge, attitudes, and practices concerning genetic tests. All of them had requested at least one genetic test in the past six months...
November 25, 2016: European Journal of Medical Genetics
https://www.readbyqxmd.com/read/27881144/comparison-of-treatment-response-remission-rate-and-drug-adherence-in-polyarticular-juvenile-idiopathic-arthritis-patients-treated-with-etanercept-adalimumab-or-tocilizumab
#11
Gerd Horneff, Ariane Klein, Jens Klotsche, Kirsten Minden, Hans-Iko Huppertz, Frank Weller-Heinemann, Jasmin Kuemmerle-Deschner, Johannes-Peter Haas, Anton Hospach
BACKGROUND: Treatment response, remission rates and compliance in patients with polyarticular juvenile idiopathic arthritis (polyJIA) treated with adalimumab, etanercept, or tocilizumab were analyzed in clinical practice. METHODS: Data collected in the German BIKER registry were analyzed in patients with polyJIA who started treatment with approved biologics, adalimumab, etanercept or tocilizumab, from 2011 to 2015. Baseline patient characteristics, treatment response, safety and drug survival were compared...
November 24, 2016: Arthritis Research & Therapy
https://www.readbyqxmd.com/read/27879631/specialized-rehabilitation-programs-for-children-and-adolescents-with-severe-disabling-chronic-pain-indications-treatment-and-outcomes
#12
REVIEW
Lorin Stahlschmidt, Boris Zernikow, Julia Wager
Children and adolescents with highly disabling chronic pain of high intensity and frequency are admitted to specialized pain rehabilitation programs. Some barriers to obtaining this specialized care include a lack of availability of treatment centers, a perceived social stigma and individual barriers such as socioeconomic status. Specialized rehabilitation programs for severe disabling chronic pain worldwide have similarities regarding admission criteria, structure and therapeutic orientation. They differ, however, regarding their exclusion criteria and program descriptions...
November 21, 2016: Children
https://www.readbyqxmd.com/read/27875781/long-term-pediatrician-outcomes-of-a-parent-led-curriculum-in-developmental-disabilities
#13
Bruce L Keisling, Elizabeth A Bishop, David A Kube, Jenness M Roth, Frederick B Palmer
: Previous research has demonstrated high satisfaction and perceived relevance of Project DOCC (Delivery of Chronic Care), a parent led curriculum in developmental disabilities, across a sample of medical residents. AIMS: The influence of such a training program on the clinical practices and professional activities of these residents once they are established in their careers as physicians, however, has not been studied; this was the aim of the present study. METHODS: An anonymous follow-up survey was designed and disseminated to physicians who participated in Project DOCC during their one-month developmental disabilities rotation as part of their pediatrics or medicine/pediatric residency between 2002 and 2010...
November 19, 2016: Research in Developmental Disabilities
https://www.readbyqxmd.com/read/27875504/screening-for-psychosocial-and-family-risk-in-pediatric-gastrointestinal-disorders
#14
Carin Cunningham, Elise Cho, Michele L Shaffer, Miranda C Bradford, Tonya Palermo
OBJECTIVES: Screening for psychosocial comorbidity is recommended for pediatric patients presenting at an initial gastroenterology (GI) outpatient consultation. We developed and evaluated the psychometric properties of the GI Screener to address the need for a screening tool specific to pediatric GI patients. METHODS: 128 patients (8-18 years old, 63% female) and 126 parents completed age-specific versions of the GI Screener and 3 validated psychosocial comparison instruments (The Behavioral Assessment System for Children, The Functional Disability Inventory, The General Functioning scale of the Family Assessment Device) at their initial GI consultation...
December 2016: Journal of Pediatric Gastroenterology and Nutrition
https://www.readbyqxmd.com/read/27873009/systematic-review-and-need-assessment-of-pediatric-trauma-outcome-benchmarking-tools-for-low-resource-settings
#15
REVIEW
Etienne St-Louis, Jade Séguin, Daniel Roizblatt, Dan Leon Deckelbaum, Robert Baird, Tarek Razek
INTRODUCTION: Trauma is a leading cause of mortality and disability in children worldwide. The World Health Organization reports that 95% of all childhood injury deaths occur in Low-Middle-Income Countries (LMIC). Injury scores have been developed to facilitate risk stratification, clinical decision making, and research. Trauma registries in LMIC depend on adapted trauma scores that do not rely on investigations that require unavailable material or human resources. We sought to review and assess the existing trauma scores used in pediatric patients...
November 21, 2016: Pediatric Surgery International
https://www.readbyqxmd.com/read/27862707/pharmacotherapy-in-patients-with-pediatric-cipo-a-nationwide-survey-in-japan
#16
Naoki Hashizume, Minoru Yagi, Kosuke Ushijima, Yoshitaka Seki, Suguru Fukahori, Mitsuru Muto, Hiroshi Matsufuji, Tomoaki Taguchi
PURPOSE: Chronic intestinal pseudo-obstruction (CIPO) is a rare disabling and life-threatening disorder characterized by a severe impairment of gastrointestinal peristalsis. With respect to pharmacotherapy, while a number of agents have been developed, only a few trials have attempted to improve the pathological condition of patients with CIPO. This report presents the actual findings of pharmacotherapy in the patients with pediatric CIPO from the view point of a nationwide survey on the actual situation in Japan...
November 12, 2016: Pediatrics International: Official Journal of the Japan Pediatric Society
https://www.readbyqxmd.com/read/27859473/prenatal-detection-of-10q22q23-duplications-dilemmas-in-phenotype-prediction
#17
Grace Wing Shan Kong, Ye Cao, Jin Huang, Kwun Yue Cheng, Amber Nolen Pursley, Jill Anne Rosenfeld, Janice G Edwards, Yiu Man Chan, Sau Wai Cheung, Tak Yeung Leung, Kwong Wai Choy
OBJECTIVES: The phenotype for 10q22q23 duplication is diverse, ranging from intellectual disability and dysmorphism to normal development. Interpreting the clinical significance of the duplication identified in this region is difficult, especially in the prenatal setting. This study aimed to characterize the prenatal findings associated with this submicroscopic imbalance and discuss the dilemmas in predicting the phenotype of 10q22q23 duplications. METHODS: This is a retrospective study of three cases of 10q22q23 duplications diagnosed prenatally by chromosomal microarray analysis...
November 8, 2016: Prenatal Diagnosis
https://www.readbyqxmd.com/read/27857786/incidence-of-obsessive-compulsive-disorder-in-children-with-nonmonosymptomatic-primary-nocturnal-enuresis
#18
Parsa Yousefichaijan, Ali Khosrobeigi, Bahman Salehi, Hassan Taherahmadi, Fakhreddin Shariatmadari, Yazdan Ghandi, Saeed Alinejad, Fateme Farhadiruzbahani
INTRODUCTION: Enuresis is defined as the repeated voiding of urine into clothes or bed at least twice a week for at least 3 consecutive months in a child who is at least 5 years of age. The behavior is not due exclusively to the direct physiologic effect of a substance or a general medical condition. Diurnal enuresis defines wetting, whereas awake and nocturnal enuresis refers to voiding during sleep. Primary enuresis occurs in children who have never been consistently dry through the night, whereas secondary enuresis refers the resumption of wetting after at least 6 months of dryness...
July 2016: Journal of Pediatric Neurosciences
https://www.readbyqxmd.com/read/27854323/a-clinical-pilot-study-of-individual-and-group-treatment-for-adolescents-with-chronic-pain-and-their-parents-effects-of-acceptance-and-commitment-therapy-on-functioning
#19
Marie Kanstrup, Rikard K Wicksell, Mike Kemani, Camilla Wiwe Lipsker, Mats Lekander, Linda Holmström
Pediatric chronic pain is common and can result in substantial long-term disability. Previous studies on acceptance and commitment therapy (ACT) have shown promising results in improving functioning in affected children, but more research is still urgently needed. In the current clinical pilot study, we evaluated an ACT-based interdisciplinary outpatient intervention (14 sessions), including a parent support program (four sessions). Adolescents were referred to the clinic if they experienced disabling chronic pain...
November 16, 2016: Children
https://www.readbyqxmd.com/read/27854230/developmental-milestones-and-quality-of-life-assessment-in-a-congenital-myotonic-dystrophy-cohort
#20
Madhavi Prasad, Rhiannon Hicks, Melissa MacKay, Cam-Tu Nguyen, Craig Campbell
BACKGROUND: Congenital myotonic dystrophy (CDM) is a neuromuscular disorder caused by a CTG triplet repeat expansion in the DMPK gene. In addition to the expected motor delay, affected children often have significant developmental disability in language and cognitive realms, which ultimately impacts on quality of life. OBJECTIVE: In a prospective cohort of children with CDM to 1) present the profile of language and motor developmental milestones, and 2) describe their early childhood health related quality of life (HRQOL)...
August 30, 2016: Journal of Neuromuscular Diseases
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