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Pediatric quality life

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https://www.readbyqxmd.com/read/28223051/functional-status-and-quality-of-life-in-survivors-of-extracorporeal-membrane-oxygenation-after-the-norwood-operation
#1
Joshua M Friedland-Little, Karen Uzark, Sunkyung Yu, Ray Lowery, Ranjit Aiyagari, Jennifer C Hirsch-Romano
BACKGROUND: Infants who require extracorporeal membrane oxygenation (ECMO) support after a Norwood operation are at increased risk for early and late death compared with patients who do not require ECMO post-Norwood. Little is known about the effect that ECMO post-Norwood has on functional status and quality of life among long-term survivors. METHODS: We prospectively evaluated functional status and health-related quality of life in 12 surviving patients (cases) and 19 corresponding patients (controls) from a previous retrospective case-control assessment of long-term survival in patients requiring ECMO post-Norwood...
February 18, 2017: Annals of Thoracic Surgery
https://www.readbyqxmd.com/read/28221267/health-related-quality-of-life-and-its-predictors-among-transfusion-dependent-thalassemia-patients
#2
Gulen Tuysuz, Funda Tayfun
PURPOSE: With regular blood transfusions and modern medical management strategies, transfusion-dependent thalassemia (TDT) patients are currently living into adulthood, but they still suffer from the chronicity of the disease and its complications. This study was aimed to assess the health-related quality of life (HRQoL) scores in pediatric TDT patients compared with healthy controls. PATIENTS AND METHODS: The PedsQL 4.0 Generic Core Scales were administered to 80 pediatric TDT patients (aged 5 to 18 y, child self-report) and their parents (parent-proxy report), as well as age-matched and sex-matched healthy controls (80 participants and their parents)...
February 17, 2017: Journal of Pediatric Hematology/oncology
https://www.readbyqxmd.com/read/28217727/assessment-of-parents-perception-of-quality-of-pediatric-oncology-inpatient-care-at-kenyatta-national-hospital
#3
Eunice Mmbone Keiza, Margaret Njambi Chege, Blasio Osogo Omuga
OBJECTIVE: Adequate knowledge of parents' perception of quality of pediatric cancer care helps to identify the areas of care improvement which would contribute to disease outcome in regard to the quality of life and satisfaction with the care provided. The aim of the study was to assess the parents' perception of the quality of Pediatric Oncology Inpatient Care at Kenyatta National Hospital. METHODS: A cross-sectional descriptive quantitative and qualitative study was undertaken using a pretested semi-structured questionnaire and a focused group discussion guide...
January 2017: Asia-Pacific Journal of Oncology Nursing
https://www.readbyqxmd.com/read/28215250/prevalence-and-quality-of-life-and-sleep-in-children-and-adolescents-with-restless-legs-syndrome-willis-ekbom-disease
#4
Heidi Haueisen Sander, Alan Luiz Eckeli, Afonso Diniz Costa Passos, Leila Azevedo, Lucila Bizari Fernandes do Prado, Regina Maria França Fernandes
OBJECTIVE: To estimate the prevalence of restless legs syndrome/Willis-Ekbom disease (RLS/WED) and its impact on sleep and quality of life in children and adolescents. METHODS: This was a cross-sectional study conducted in the Municipality of Cássia dos Coqueiros, Brazil. Participants included 383 children and adolescents 5-17 years of age. A comparison group was randomly matched by gender and age with the RLS/WED-affected individuals, pairing one by one. RESULTS: Interviews were conducted for 383 individuals by a neurologist experienced in sleep medicine...
February 2017: Sleep Medicine
https://www.readbyqxmd.com/read/28214318/clinical-course-treatment-modalities-and-quality-of-life-in-patients-with-congenital-melanocytic-nevi-data-from-the-german-cmn-registry
#5
Maria Elisabeth Wramp, Anna Langenbruch, Matthias Augustin, Detlef Zillikens, Sven Krengel
BACKGROUND: Congenital melanocytic nevi (CMN) are associated with mental stress as well as medical risks for those affected. The German CMN registry was initiated in 2005. Herein, we present results from an interim analysis focusing on disease course, treatment modalities, and quality of life. PATIENTS AND METHODS: One hundred patients enrolled in the registry between 2005 and 2012 were included in this prospective cohort study, and asked to participate in a follow-up survey...
February 2017: Journal der Deutschen Dermatologischen Gesellschaft, Journal of the German Society of Dermatology: JDDG
https://www.readbyqxmd.com/read/28213684/quality-of-life-improves-in-children-and-adolescents-during-a-community-based-overweight-and-obesity-treatment
#6
Pernille M Mollerup, Tenna R H Nielsen, Christine Bøjsøe, Julie T Kloppenborg, Jennifer L Baker, Jens-Christian Holm
PURPOSE: The quality of life is compromised in children and adolescents with overweight or obesity. The aim of this study was to evaluate whether the quality of life improves during a community-based overweight and obesity treatment, and whether improvements depend on reductions in the degree of obesity. METHODS: Quality of life was assessed using the Pediatric Quality of Life Inventory (PedsQL) 4.0 in children and adolescents aged 3-18 years with overweight or obesity [body mass index (BMI) ≥85th percentile] upon entry into a community-based chronic care overweight and obesity treatment based upon The Children's Obesity Clinic's Treatment protocol, and upon follow-up after 10-30 months of treatment...
February 17, 2017: Quality of Life Research
https://www.readbyqxmd.com/read/28211100/safety-and-feasibility-of-heated-egg-yolk-challenge-for-children-with-egg-allergies
#7
Noriyuki Yanagida, Sakura Sato, Tomoyuki Asaumi, Kiyotake Ogura, Magnus P Borres, Motohiro Ebisawa
BACKGROUND: Hen's egg allergy is a frequent cause of childhood food allergy. Egg yolk is used in various commonly consumed foods; if children with allergy to hen's egg could eat heated egg yolk, their quality of life (QOL) would improve. No reports exist regarding oral food challenges (OFCs) for heated egg yolk. We aimed to clarify whether pediatric patients allergic to hen's egg could consume heated egg yolk. METHODS: Data from pediatric patients who had undergone OFCs for heated egg yolk were evaluated retrospectively...
February 16, 2017: Pediatric Allergy and Immunology
https://www.readbyqxmd.com/read/28199002/validating-the-shortened-quality-of-life-in-childhood-epilepsy-questionnaire-qolce-55-in-a-sample-of-children-with-drug-resistant-epilepsy
#8
Lauryn Conway, Elysa Widjaja, Mary Lou Smith, Kathy N Speechley, Mark A Ferro
OBJECTIVE: The aim of this study was to validate the newly developed shortened Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55) in a sample of children with drug-resistant epilepsy. METHODS: Data came from 136 children enrolled in the Impact of Pediatric Epilepsy Surgery on Health-Related Quality of Life Study (PEPSQOL), a multicenter prospective cohort study. Confirmatory factor analysis was used to assess the higher-order factor structure of the QOLCE-55...
February 15, 2017: Epilepsia
https://www.readbyqxmd.com/read/28198162/the-health-related-quality-of-life-of-children-adolescents-and-young-adults-with-neurofibromatosis-type-1-and-their-families-analysis-of-narratives
#9
Claire Burke Draucker, Kavitha Nutakki, James W Varni, Nancy L Swigonski
PURPOSE: Provide an in-depth description of the health-related quality of life (HRQoL) in youth diagnosed with neurofibromatosis type 1 (NF1) and their families. DESIGN AND METHODS: Data were drawn from qualitative interviews conducted for a larger study aimed at developing the Pediatric Quality of Life Inventory™ (PedsQL™) NF1 module. RESULTS: Youth with NF1 and their families experience a wide range of concerns related to HRQoL due to the varied symptom expression and uncertain trajectory of the disorder...
February 15, 2017: Journal for Specialists in Pediatric Nursing: JSPN
https://www.readbyqxmd.com/read/28193306/quality-of-life-of-young-patients-with-recurrent-respiratory-papillomatosis
#10
B B Montaño-Velázquez, J Nolasco-Renero, J E Parada-Bañuelos, F Garcia-Vázquez, S Flores-Medina, C S García-Romero, K Jáuregui-Renaud
OBJECTIVE: To assess quality of life of children and teenagers with recurrent respiratory papillomatosis, according to the evidence of infection by human papillomavirus types 6 and 11, compared with healthy volunteers and patients with chronic otitis media. METHOD: Participants and their parents completed the Pediatric Quality of Life Inventory 4.0. RESULTS: Patients with recurrent respiratory papillomatosis and their parents reported lower quality of life than healthy subjects (p < 0...
February 14, 2017: Journal of Laryngology and Otology
https://www.readbyqxmd.com/read/28193257/bell-s-palsy-in-children-bellpic-protocol-for-a-multicentre-placebo-controlled-randomized-trial
#11
Franz E Babl, Mark T Mackay, Meredith L Borland, David W Herd, Amit Kochar, Jason Hort, Arjun Rao, John A Cheek, Jeremy Furyk, Lisa Barrow, Shane George, Michael Zhang, Kaya Gardiner, Katherine J Lee, Andrew Davidson, Robert Berkowitz, Frank Sullivan, Emily Porrello, Kim Marie Dalziel, Vicki Anderson, Ed Oakley, Sandy Hopper, Fiona Williams, Catherine Wilson, Amanda Williams, Stuart R Dalziel
BACKGROUND: Bell's palsy or acute idiopathic lower motor neurone facial paralysis is characterized by sudden onset paralysis or weakness of the muscles to one side of the face controlled by the facial nerve. While there is high level evidence in adults demonstrating an improvement in the rate of complete recovery of facial nerve function when treated with steroids compared with placebo, similar high level studies on the use of steroids in Bell's palsy in children are not available. The aim of this study is to assess the utility of steroids in Bell's palsy in children in a randomised placebo-controlled trial...
February 13, 2017: BMC Pediatrics
https://www.readbyqxmd.com/read/28188025/vagus-nerve-stimulation-in-children-a-focus-on-intellectual-disability
#12
REVIEW
Jo Sourbron, Sylvia Klinkenberg, Alfons Kessels, Helenius Jurgen Schelhaas, Lieven Lagae, Marian Majoie
INTRODUCTION: Vagus Nerve Stimulation (VNS) can be an efficacious add-on treatment in patients with drug-resistant epilepsy, who are not eligible for surgery. Evidence of VNS efficacy in children with intellectual disability (ID) is scarce. OBJECTIVES: The purpose of this study was to review all available VNS data in the pediatric population (≤18 years old) and focus on the subpopulation with ID since appropriate treatment of these children is often challenging and complex...
January 30, 2017: European Journal of Paediatric Neurology: EJPN
https://www.readbyqxmd.com/read/28186850/the-use-of-dexmedetomidine-in-pediatric-palliative-care-a-preliminary-study
#13
Jamie Burns, Kevin Jackson, Kathy A Sheehy, Julia C Finkel, Zenaide M Quezado
OBJECTIVE: To evaluate the effect of dexmedetomidine infusions in patients with advanced malignancies, advanced heart disease, or after stem cell transplantation (SCT), who during end-of-life care had pain and/or agitation unresponsive to conventional therapies. BACKGROUND: Pediatric patients with intractable advanced malignancies, end-stage congenital heart diseases, or after SCT can suffer a great deal during end of life. Pain, drowsiness, fatigue, irritability, and worrying are experienced frequently, considered distressing, and are strongly associated with reductions in health-related quality-of-life scores...
February 10, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28186840/fertility-preservation-care-for-children-and-adolescents-with-cancer-an-inquiry-to-quantify-professionals-barriers
#14
Nikoletta Panagiotopoulou, Frederik W van Delft, Juliet P Hale, Jane A Stewart
PURPOSE: There is a growing interest in fertility preservation as emerging research is highlighting the prevalence of infertility among young cancer survivors and its negative impact on quality of life. Previous qualitative research has identified barriers of fertility preservation care among professionals. The aim of this study was to assess the prevalence of these barriers among pediatric and adolescent oncology healthcare professionals and evaluate factors that influence them. METHODS: Based on previously identified barriers and experts' input, a questionnaire was developed and sent to 88 professionals drawn from the multidisciplinary pediatric and adolescent oncology team of a large Principal Treatment Centre...
February 10, 2017: Journal of Adolescent and Young Adult Oncology
https://www.readbyqxmd.com/read/28177739/effects-of-aerobic-or-resistance-training-or-both-on-health-related-quality-of-life-in-youth-with-obesity-the-hearty-trial
#15
Gary S Goldfield, Glen P Kenny, Angela S Alberga, Heather E Tulloch, Steve Doucette, Jameason D Cameron, Ronald J Sigal
This study examined the effects of aerobic and resistance training, and their combination on health-related quality of life (HRQoL) in adolescents with overweight or obesity. After a 4-week run-in period, 304 (91 males, 213 females) post-pubertal adolescents aged 14-18 years, were randomized to 4 groups for 22 weeks of: aerobic training (N=75), resistance training (N=78), combined aerobic and resistance training (N=75), or non-exercising control (N=76). All participants received dietary counseling with a daily energy deficit of 250 kcal...
December 9, 2016: Applied Physiology, Nutrition, and Metabolism, Physiologie Appliquée, Nutrition et Métabolisme
https://www.readbyqxmd.com/read/28176508/a-structured-therapeutic-education-program-for-children-and-adolescents-with-type-1-diabetes-an-analysis-of-the-efficacy-of-the-pediatric-education-for-diabetes-project
#16
Alessandra Mauri, Susanna Schmidt, Valentina Sosero, Maria Sambataro, Laura Nollino, Francesco Fabris, Anna Corò, Antonella Scantamburlo, Michela Cazziola-Merlotto, Tania Ciani, Michele Tessarin, Agostino Paccagnella
BACKGROUND: Therapeutic education for Type 1 Diabetes involves the process of transmitting knowledge and developing the skills and behavior required to treat the disease. guidelines agree on stressing the importance of therapeutic educational intervention in teaching self-management skills to children and adolescents with Type 1 Diabetes (T1D). This study presents the results of the "Pediatric Education for Type 1 Diabetes (T1D)" (PED) project, specifically designed for children and adolescents aged 6 to 16, and structured on guidelines indications, as part of a broader clinical-educational intervention for Type 1 diabetes...
February 7, 2017: Minerva Pediatrica
https://www.readbyqxmd.com/read/28175989/predictors-of-health-related-quality-of-life-in-boys-with-duchenne-muscular-dystrophy-from-six-european-countries
#17
Christiane Otto, Birgit F Steffensen, Ann-Lisbeth Højberg, Claus Barkmann, Jes Rahbek, Ulrike Ravens-Sieberer, Annette Mahoney, Julia Vry, Kathrin Gramsch, Rachel Thompson, Sunil Rodger, Kate Bushby, Hanns Lochmüller, Janbernd Kirschner
Duchenne muscular dystrophy (DMD) is a progressive, genetically determined neuromuscular disease that affects males and leads to severe physical disability in early teenage years. Over the last decades, patient-reported outcomes such as Health-Related Quality of Life (HRQoL) gained great interest in clinical research. However, little is known about factors affecting HRQoL in boys with DMD. Data from the multi-center CARE-NMD project of boys with DMD from six European countries collected between 2011 and 2012 were analyzed (8-17 years old; n = 321)...
February 7, 2017: Journal of Neurology
https://www.readbyqxmd.com/read/28174481/what-do-the-relationships-between-functional-classification-systems-of-children-with-cerebral-palsy-tell-us
#18
Akmer Mutlu, Pelin Pistav-Akmese, Bilge Nur Yardımcı, Tuncay Ogretmen
[Purpose] To examine the distribution of and relationship between the Gross Motor Function, Manual Ability, and Communication Function Classification Systems in different limbs of children with spastic cerebral palsy. We also investigated whether the four predicting variables of gender, age, manual ability, and gross motor classifications could significantly predict effective and non-effective communicator groups in communication function. [Subjects and Methods] This retrospective cross-sectional study included 327 children with a mean age of 10...
December 2016: Journal of Physical Therapy Science
https://www.readbyqxmd.com/read/28174215/pain-control-and-parent-mental-health-among-pediatric-inpatients
#19
Andrew Barnes, Ashley Tollefson, Patricia Hickey, Jennifer Bares, Lei Zhang
OBJECTIVE: Pain control remains a problem for hospitalized children, with more than half experiencing ongoing pain. Pain in turn negatively affects child quality of life. To clarify the relationship between inpatient pain control and parent and child psychological factors, we tested the hypotheses that pain control is worse in the context of higher child executive function problems, lower parent mindfulness, and higher parent mental health symptoms. METHODS: We conducted an observational study of stable pediatric inpatients' (n = 81; mean age = 10...
February 7, 2017: Hospital Pediatrics
https://www.readbyqxmd.com/read/28170312/problem-video-gaming-among-children-enrolled-in-tertiary-weight-management-programs
#20
Sam Stubblefield, George Datto, Thao-Ly T Phan, Lloyd N Werk, Kristin Stackpole, Robert Siegel, William Stratbucker, Jared M Tucker, Amy L Christison, Jobayer Hossain, Douglas A Gentile
Prior studies show seven percent to nine percent of children demonstrate gaming behaviors that affect a child's ability to function (e.g., problem gaming), but none have examined the association between problem gaming and weight status. The objective of this study was to determine the prevalence of problem gaming among children enrolled in tertiary weight management programs. We administered a computer-based survey to a convenience sample of children aged 11-17 years enrolled in five geographically diverse pediatric weight management (PWM) programs in the COMPASS (Childhood Obesity Multi-Program Analysis and Study System) network...
February 2017: Cyberpsychology, Behavior and Social Networking
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