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https://www.readbyqxmd.com/read/27919346/disease-control-via-intensified-lipoprotein-apheresis-in-three-siblings-with-familial-hypercholesterolemia
#1
Christina Taylan, Andrea Schlune, Thomas Meissner, Karolis Ažukaitis, Floris E A Udink Ten Cate, Lutz T Weber
BACKGROUND: Familial hypercholesterolemia (FH), the prevalent monogenic form of hypercholesterolemia, carries the risk of premature coronary heart disease. Lipoprotein-apheresis is established in children with severe dyslipidemia. We present 3 siblings with a negative/negative residual low-density lipoprotein (LDL) receptor mutation (p.Trp577Arg), unresponsive to drug treatment. OBJECTIVE: Intensified lipoprotein-apheresis is well tolerated and results in permanently low lipid values without harming the health-related quality of life in children...
November 2016: Journal of Clinical Lipidology
https://www.readbyqxmd.com/read/27919265/fatigue-in-patients-with-juvenile-idiopathic-arthritis-relationship-to-perceived-health-physical-health-self-efficacy-and-participation
#2
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/27887683/sacral-nerve-stimulation-allows-for-decreased-antegrade-continence-enema-use-in-children-with-severe-constipation
#3
Peter L Lu, Lindsey Asti, Daniel L Lodwick, Kristine M Nacion, Katherine J Deans, Peter C Minneci, Steven Teich, Seth A Alpert, Desale Yacob, Carlo Di Lorenzo, Hayat M Mousa
BACKGROUND: Sacral nerve stimulation (SNS) can be beneficial for children with constipation, but no studies have focused on children with constipation severe enough to require antegrade continence enemas (ACEs). Our objective was to evaluate the efficacy of SNS in children with constipation treated with ACE. METHODS: Using a prospective patient registry, we identified patients <21years old who were receiving ACE prior to SNS placement. We compared ACE/laxative usage, PedsQL Gastrointestinal Symptom Scale (GSS), Fecal Incontinence Quality of Life Scale (FIQL), Fecal Incontinence Severity Index (FISI), and Vancouver Dysfunctional Elimination Syndrome Score (DES) at baseline and progressive follow-up time intervals...
November 10, 2016: Journal of Pediatric Surgery
https://www.readbyqxmd.com/read/27886806/psychopathology-quality-of-life-and-related-factors-in-children-with-celiac-disease
#4
Eylem Sevinç, Fatih Hilmi Çetin, Banu Demet Coşkun
OBJECTIVE: This study aimed to survey children with celiac disease (CD) for psychiatric disorders, determine the possible factors that predict psychopathology, and analyze health-related quality of life and possible factors that could affect the quality of life. METHODS: In this study, all children completed the Schedule for Affective Disorders and Schizophrenia for School Age Children - Present and Lifetime Version - Turkish Version (K-SADS-PL-T), as well as the Pediatric Quality of Life Inventory (PedsQL) for the 8-12 age group, and a sentence completion test...
November 23, 2016: Jornal de Pediatria
https://www.readbyqxmd.com/read/27864715/laparoscopic-antireflux-surgery-increases-health-related-quality-of-life-in-children-with-gerd
#5
Femke A Mauritz, Rebecca K Stellato, L W Ernst van Heurn, Peter D Siersema, Cornelius E J Sloots, Roderick H J Houwen, David C van der Zee, Maud Y A van Herwaarden-Lindeboom
INTRODUCTION: Improving health-related quality of life (HRQoL) is increasingly recognized as an essential part of patient care outcome. Little is known about the effect of laparoscopic antireflux surgery (LARS) on the HRQoL in the pediatric patients. The aims of this study were to evaluate the effect of LARS on HRQoL in children with gastroesophageal reflux disease (GERD) and to identify predictors that influence HRQoL outcome after LARS. METHODS: Between 2011 and 2013, 25 patients with therapy-resistant GERD [median age 6 (2-18) years] were included prospectively...
November 18, 2016: Surgical Endoscopy
https://www.readbyqxmd.com/read/27854230/developmental-milestones-and-quality-of-life-assessment-in-a-congenital-myotonic-dystrophy-cohort
#6
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
https://www.readbyqxmd.com/read/27853293/association-of-arsenic-methylation-capacity-with-developmental-delays-and-health-status-in-children-a-prospective-case-control-trial
#7
Yu-Mei Hsueh, Wei-Jen Chen, Chih-Ying Lee, Ssu-Ning Chien, Horng-Sheng Shiue, Shiau-Rung Huang, Ming-I Lin, Shu-Chi Mu, Ru-Lan Hsieh
This case-control study identified the association between the arsenic methylation capacity and developmental delays and explored the association of this capacity with the health status of children. We recruited 120 children with developmental delays and 120 age- and sex-matched children without developmental delays. The health status of the children was assessed using the Pediatric Quality of Life Inventory (PedsQL) and Pediatric Outcomes Data Collection Instrument (PODCI). The arsenic methylation capacity was determined by the percentages of inorganic arsenic (InAs%), monomethylarsonic acid (MMA(V)%), and dimethylarsinic acid (DMA(V)%) through liquid chromatography and hydride generation atomic absorption spectrometry...
November 17, 2016: Scientific Reports
https://www.readbyqxmd.com/read/27848129/neonatal-risk-mortality-scores-as-predictors-for-health-related-quality-of-life-of-infants-treated-in-nicu-a-prospective-cross-sectional-study
#8
K Lah Tomulic, J Mestrovic, M Zuvic, K Rubelj, B Peter, I Bilic Cace, A Verbic
PURPOSE: To determine the relationship of Apgar scores, gestational age and neonatal risk mortality scores to health-related quality of life (HRQoL) for infants at the age of 8 months treated after birth in neonatal intensive care unit (NICU). METHODS: All surviving infants treated in two-third level NICUs in Rijeka, Croatia (from August 2013 to August 2014) were included in this prospective, cross-sectional study. For all neonates, the Score for Neonatal Acute Physiology (SNAP), SNAP with Perinatal Extension (SNAP-PE) and their simplified modifications (SNAP II and SNAP-PE II) were calculated...
November 15, 2016: Quality of Life Research
https://www.readbyqxmd.com/read/27848005/neurocognitive-and-psychosocial-function-in-children-with-benign-external-hydrocephalus-beh-a-long-term-follow-up-study
#9
Rebecka Mikkelsen, Linn Nilsen Rødevand, Ulrikke Straume Wiig, Sverre Morten Zahl, Torhild Berntsen, Anne-Britt Skarbø, Arild Egge, Eirik Helseth, Stein Andersson, Knut Wester
INTRODUCTION: Long-term impact of benign external hydrocephalus (BEH) on cognition is largely unknown, and indication for neurosurgical CSF diversion procedure is debated. This study reports neuropsychological and psychosocial function in operated and non-operated BEH children. METHODS: Eighty-six children (76 males) between 8 and 18 years (mean 13.9) diagnosed with BEH before 12 months were included, of whom 30.2 % were operated. Participants completed neuropsychological tests and questionnaires covering quality of life (PedsQL) and executive function (BRIEF)...
November 15, 2016: Child's Nervous System: ChNS: Official Journal of the International Society for Pediatric Neurosurgery
https://www.readbyqxmd.com/read/27843752/thalassemia-major-how-do-we-improve-quality-of-life
#10
Nonita Dhirar, Jyoti Khandekar, Damodar Bachani, Deonath Mahto
BACKGROUND: Thalassemia Major is a preventable genetic disorder characterized by abnormal hemoglobin synthesis and lifelong blood transfusions. The children suffering from Thalassemia Major have poor quality of life. This study was conducted to assess the factors influencing quality of life of these children and how it can be improved. METHODS: A descriptive cross sectional study was conducted in 2014 at Thalassemia Day Care Centre of a tertiary level children's hospital in Delhi, to assess quality of life of children suffering from Thalassemia Major...
2016: SpringerPlus
https://www.readbyqxmd.com/read/27836372/children-with-hepatitis-c-the-impact-of-disease-and-treatment-on-patients-caregivers-and-families
#11
Rachel A Annunziato, Samantha G Lee, Elizabeth Galici, Ronen Arnon
: Previous research on children with HCV has examined patient psychosocial outcomes but little is known about the impact of HCV and its prolonged treatment, which includes weekly injections and oral medications for 6-12 months, on caregivers and families. The present study aimed to address this gap. DESIGN AND METHODS: Using a case series design (N=10), baseline distress levels of individuals and families as well as changes during HCV treatment were examined. A brief patient, caregiver, and family assessment packet was given before and immediately after treatment, but before the final outcome of treatment was known...
November 8, 2016: Journal of Pediatric Nursing
https://www.readbyqxmd.com/read/27830512/the-validation-of-a-computer-adaptive-test-cat-for-assessing-health-related-quality-of-life-in-children-and-adolescents-in-a-clinical-sample-study-design-methods-and-first-results-of-the-kids-cat-study
#12
D Barthel, C Otto, S Nolte, A-K Meyrose, F Fischer, J Devine, O Walter, A Mierke, K I Fischer, U Thyen, M Klein, T Ankermann, M Rose, U Ravens-Sieberer
PURPOSE: Recently, we developed a computer-adaptive test (CAT) for assessing health-related quality of life (HRQoL) in children and adolescents: the Kids-CAT. It measures five generic HRQoL dimensions. The aims of this article were (1) to present the study design and (2) to investigate its psychometric properties in a clinical setting. METHODS: The Kids-CAT study is a longitudinal prospective study with eight measurements over one year at two University Medical Centers in Germany...
November 9, 2016: Quality of Life Research
https://www.readbyqxmd.com/read/27830395/glutamine-for-the-treatment-of-vincristine-induced-neuropathy-in-children-and-adolescents-with-cancer
#13
Stephen Sands, Elena J Ladas, Kara M Kelly, Michael Weiner, Meiko Lin, Deborah Hughes Ndao, Amie Dave, Linda T Vahdat, Julia Glade Bender
BACKGROUND: Vincristine is an integral treatment component of many childhood tumors with potentially dose-limiting sensory and/or motor neuropathy. Results from a pilot study on the incidence of vincristine-induced peripheral neuropathy (VIPN) as well as the efficacy and safety of glutamine in reducing signs and symptoms of VIPN in children with cancer are presented. METHODS: Fifty-six patients between the ages of 5-21 with newly diagnosed leukemia, lymphoma, extracranial solid tumor or medulloblastoma and expected to receive a minimum cumulative dose of 6 mg/m(2) of vincristine over a 30-week period were eligible...
November 9, 2016: Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer
https://www.readbyqxmd.com/read/27812849/can-in-the-moment-diary-methods-measure-health-related-quality-of-life-in-duchenne-muscular-dystrophy
#14
Paula Bray, Anita C Bundy, Monique M Ryan, Kathryn N North
AIM: To investigate whether in-the-moment diary reports of daily experience, taken collectively, are a valid representation of health-related quality of life (HRQL). METHODS: A total of 35 boys with Duchenne muscular dystrophy (DMD) were recruited through four neuromuscular care providers across Australia. Participants completed the PedsQL™ Generic Core scales and one week of experience-sampling diary reporting on a personal digital assistant. Rasch analysis was undertaken on the diary data to derive a single valid measure score...
November 3, 2016: Quality of Life Research
https://www.readbyqxmd.com/read/27811471/systematic-review-of-health-related-quality-of-life-in-adolescents-with-psoriasis
#15
Jessica Gonzalez, Kiera Cunningham, Jason Perlmutter, Alice Gottlieb
BACKGROUND: Many cases of psoriasis begin in adolescence. The affected adolescents face the combined physical and psychosocial challenges of their disease-free peers with the added complexity of a visible disease. OBJECTIVE: To review the impact of psoriasis on the health-related quality of life (HRQL) in adolescents as compared to their peers with other chronic diseases and to determine the best tools to measure HRQL in this population. METHODS: A systematic literature review was completed using PubMed...
November 4, 2016: Dermatology: International Journal for Clinical and Investigative Dermatology
https://www.readbyqxmd.com/read/27793072/the-effects-of-connective-tissue-manipulation-and-kinesio-taping-on-chronic-constipation-in-children-with-cerebral-palsy-a-randomized-controlled-trial
#16
Ceren Orhan, Ozgun Kaya Kara, Serap Kaya, Turkan Akbayrak, Mintaze Kerem Gunel, Gül Baltaci
PURPOSE: The aim of this study was to investigate the effects of connective tissue manipulation (CTM) and Kinesio Taping(®) (KT) on constipation and quality of life in children with cerebral palsy (CP). METHOD: This study was designed as a randomized controlled trial. Forty children diagnosed with chronic constipation based on Rome III criteria were randomly assigned to CTM group [6 females, 7 males; 8 y 6 mo (SD = 3y 4 mo)], KT group [7 female, 7 male; 8y 7 mo (SD =3y 5 mo)] or control group [6 female, 7 male; 8y 3 mo (SD = 3y 6 mo)]...
October 28, 2016: Disability and Rehabilitation
https://www.readbyqxmd.com/read/27791706/patient-reported-outcomes-of-occipitocervical-and-atlantoaxial-fusions-in-children
#17
Aditya Vedantam, Daniel Hansen, Valentina Briceño, Alison Brayton, Andrew Jea
OBJECTIVE There is limited literature on patient-reported outcomes (PROs) and health-related quality of life (HRQOL) outcomes in pediatric patients undergoing surgery for craniovertebral junction pathology. The aim of the present study was to assess surgical and quality of life outcomes in children who had undergone occipitocervical or atlantoaxial fusion. METHODS The authors retrospectively reviewed the demographics, procedural data, and outcomes of 77 consecutive pediatric patients who underwent posterior occipitocervical or atlantoaxial fusion between 2008 and 2015 at Texas Children's Hospital...
October 28, 2016: Journal of Neurosurgery. Pediatrics
https://www.readbyqxmd.com/read/27775762/association-of-persistent-postconcussion-symptoms-with-pediatric-quality-of-life
#18
Zuzana Novak, Mary Aglipay, Nick Barrowman, Keith O Yeates, Miriam H Beauchamp, Jocelyn Gravel, Stephen B Freedman, Isabelle Gagnon, Gerard Gioia, Kathy Boutis, Emma Burns, Andrée-Anne Ledoux, Martin H Osmond, Roger L Zemek
Importance: Persistent postconcussion symptoms (PPCS) pose long-term challenges and can negatively affect patients' health-related quality of life (HRQoL). To date, no large comprehensive study has addressed the association between PPCS and HRQoL. Objectives: To determine the association between HRQoL and PPCS at 4 weeks after concussion and assess the degree of impairment of HRQoL in the subsequent 12 weeks. Design, Setting, and Participants: In a prospective, multicenter cohort study (Predicting Persistent Postconcussive Problems in Pediatrics [5P]) from August 14, 2013, to September 30, 2014, children aged 5 to 18 years who presented to the emergency department within 48 hours after head injury and were considered to have an acute concussion were enrolled across 9 pediatric emergency departments within the Pediatric Emergency Research Canada Network...
December 5, 2016: JAMA Pediatrics
https://www.readbyqxmd.com/read/27774638/psychosocial-problems-of-children-whose-parents-visit-the-emergency-department-due-to-intimate-partner-violence-substance-abuse-or-a-suicide-attempt
#19
E M M Hoytema van Konijnenburg, J H van der Lee, A H Teeuw, R Lindeboom, S N Brilleslijper-Kater, T Sieswerda-Hoogendoorn, J B van Goudoever, R J L Lindauer
BACKGROUND: High levels of maltreatment are found in children who are identified because their parents visit the emergency department due to partner violence, substance abuse or suicide attempt. However, it is unknown if these children experience psychosocial problems. This study aims to assess their levels of post-traumatic stress, anxiety, depression, behavioural problems and health-related quality of life. METHODS: A cross-sectional study was conducted in six hospitals...
October 23, 2016: Child: Care, Health and Development
https://www.readbyqxmd.com/read/27749610/gastrointestinal-symptoms-predictors-of-health-related-quality-of-life-in-patients-with-inflammatory-bowel-disease
#20
James W Varni, Robert J Shulman, Mariella M Self, Shehzad A Saeed, Ashish S Patel, Samuel Nurko, Deborah A Neigut, Miguel Saps, James P Franciosi, Jolanda M Denham, George M Zacur, Chelsea V Dark, Cristiane B Bendo, John F Pohl
OBJECTIVES: The aim of the study was to investigate the multidimensional gastrointestinal symptoms predictors of generic health-related quality of life (HRQOL) in pediatric patients with inflammatory bowel disease from the perspectives of pediatric patients and parents. METHODS: The Pediatric Quality of Life Inventory Gastrointestinal Symptoms Scales and Pediatric Quality of Life Inventory 4.0 Generic Core Scales were completed in a 9-site study by 260 families of patients with inflammatory bowel disease...
December 2016: Journal of Pediatric Gastroenterology and Nutrition
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