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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/28215250/prevalence-and-quality-of-life-and-sleep-in-children-and-adolescents-with-restless-legs-syndrome-willis-ekbom-disease
#3
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/28213684/quality-of-life-improves-in-children-and-adolescents-during-a-community-based-overweight-and-obesity-treatment
#4
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/28209722/long-term-outcome-of-hematopoietic-stem-cell-transplantation-for-il2rg-jak3-scid-a-cohort-report
#5
Intan Juliana Abd Hamid, Mary A Slatter, Fiona McKendrick, Mark S Pearce, Andrew R Gennery
Hematopoietic stem cell transplantation (HSCT) cures the T-lymphocyte, B-lymphocyte and Natural Killer (NK) cell differentiation defect in IL2RG/JAK3 SCID. We evaluated long-term clinical features, longitudinal immunoreconstitution, donor chimerism and quality of life (QoL) of IL2RG/JAK3 SCID patients >2 years post-HSCT at our center. Clinical data were collated and patients/families answered PedsQL Generic Core Scale v4.0 questionnaires. We performed longitudinal analyses of CD3+, CD4+ naïve T-lymphocyte, CD19+ and NK cell numbers from pre-transplant until 15 years post-transplant...
February 16, 2017: Blood
https://www.readbyqxmd.com/read/28205363/health-related-quality-of-life-after-combined-liver-and-kidney-transplantation-in-children
#6
Kaja Schmaeschke, Susanne Lezius, Enke Grabhorn, Markus J Kemper, Florian Brinkert
While reduced HRQOL following isolated organ transplantation has been previously reported, there are no data in the context of children following CLKT. Twenty-three children who underwent CLKT at our institution were included in the study. The indication for CLKT was PH1 in 13 patients and ARPKD in 10 patients. Quantification of HRQOL was facilitated through the use of the PedsQL 4.0 Generic Core Scale. The results of the study were compared to healthy children and published data of children who had undergone LTx or KTx...
February 15, 2017: Pediatric Transplantation
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
#7
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/28190558/antegrade-continence-enemas-improve-quality-of-life-in-patients-with-medically-refractory-encopresis
#8
Joseph T Church, Sidd Simha, Laurie C Wild, Daniel H Teitelbaum, Peter F Ehrlich
PURPOSE: Fecal incontinence is a socially debilitating problem for many children. We hypothesized that in selected patients with medically-refractory encopresis, placement of an appendicostomy or cecostomy tube for administration of antegrade continence enemas (ACE) would improve quality of life (QOL). METHODS: We reviewed all patients with encopresis who underwent appendicostomy or cecostomy placement from 2003 to 2014 at our institution. We contacted subjects' parents by phone and administered 3 surveys: a survey reflecting current stooling habits, a disease-specific QOL survey, and the PedsQL™ QOL survey...
January 30, 2017: Journal of Pediatric Surgery
https://www.readbyqxmd.com/read/28175989/predictors-of-health-related-quality-of-life-in-boys-with-duchenne-muscular-dystrophy-from-six-european-countries
#9
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/28169931/bowel-function-and-quality-of-life-after-transanal-endorectal-pull-through-for-hirschsprung-disease-controlled-outcomes-up-to-adulthood
#10
Malla I Neuvonen, Kristiina Kyrklund, Risto J Rintala, Mikko P Pakarinen
OBJECTIVE: The aim of this study was to define controlled outcomes up to adulthood for bowel function and quality of life (QoL) after transanal endorectal pull-through (TEPT) for Hirschsprung disease (HD). SUMMARY OF BACKGROUND DATA: Although TEPT is the surgical standard for HD, controlled long-term follow-up studies evaluating bowel function and QoL are lacking. METHODS: Patients aged ≥4 years operated for HD with TEPT between 1987 and 2011 answered detailed questionnaires on bowel function and QoL [Pediatric Quality of Life Inventory (PedsQL, age <18 yrs) or Gastrointestinal Quality of Life Index (GIQLI) and SF-36]...
March 2017: Annals of Surgery
https://www.readbyqxmd.com/read/28141561/general-and-disease-specific-scales-in-children-with-asthma-and-their-parents
#11
Oktay Sari, Umit Aydogan, Mustafa Gulec, Yusuf Cetin Doganer, Suleyman Tolga Yavuz
OBJECTIVE: To investigate and compare the efficiency of general and disease-specific life quality scales in children with asthma. METHODS: Children with asthma, and their parents completed the Childhood Asthma Control Test (C-ACT), Pediatric Asthma Quality of Life Questionnaire (PAQLQ), Pediatric Quality of Life Inventory (PedsQL), and also underwent spirometry. RESULTS: 82 children (55 males) with a median (IQR) age of 10.1 (8.9-10.5) years were included...
January 15, 2017: Indian Pediatrics
https://www.readbyqxmd.com/read/28133992/the-family-impact-of-caring-for-a-child-with-juvenile-dermatomyositis
#12
Samantha Kountz-Edwards, Christa Aoki, Caitlin Gannon, Rowena Gomez, Matthew Cordova, Wendy Packman
Background Juvenile dermatomyositis (JDM), a rare autoimmune disease, accounts for more than 80% of idiopathic inflammatory myopathy childhood cases, making it the most common idiopathic inflammatory myopathy among children. The average age of onset is approximately 7 years and commonly leads a chronic course. Symptoms of JDM include cutaneous features (Gottron's rash, heliotrope rash, or nail fold capillary changes), musculoskeletal features, calcinosis and lipodystrophy (a symmetrical deficit of subcutaneous fatty tissue), and acanthosis (thickening of the skin)...
January 1, 2017: Chronic Illness
https://www.readbyqxmd.com/read/28128793/quality-of-life-and-functional-vision-in-children-treated-for-cataract-a-cross-sectional-study
#13
V K Tailor, Y Abou-Rayyah, J Brookes, P T Khaw, M Papadopoulos, G G W Adams, C Bunce, A Dahlmann-Noor
PurposeChildren with cataract and their families face intensive medical and surgical management, with numerous hospital attendances, topical medications, and surgical procedures, as well as uncertainty about the child's future visual ability, education, and independence. Little is known about the impact on functional visual ability, vision-, and health-related quality of life (VR-, HR-QoL).Patients and methodsSeventy two children aged 2-16 years (mean 8.45, SD 4.1) treated for developmental or secondary cataract and their parents/carers completed three validated instruments measuring functional visual ability, VR-, and HR-QoL: the Cardiff Visual Ability Questionnaire for Children (CVAQC), Impact of Vision Impairment for Children (IVI-C), and PedsQL V 4...
January 27, 2017: Eye
https://www.readbyqxmd.com/read/28125932/brief-cognitive-behavioral-intervention-for-children-and-adolescents-with-persistent-post-concussive-symptoms-a-pilot-study
#14
Kelly A McNally, Kristina E Patrick, Jacob E LaFleur, Jana B Dykstra, Kerry Monahan, Kristen R Hoskinson
This study aims to evaluate the efficacy of a brief cognitive behavioral intervention program for children and adolescents experiencing persistent post-concussion symptoms. A total of 31 patients aged 10 to 18 years participated in the intervention. The median time since injury at treatment onset was 95 days though the range was large (23-720 days). Treatment was on average four sessions in duration. Sessions included concussion education, activity scheduling, sleep hygiene relaxation training, and cognitive restructuring...
January 26, 2017: Child Neuropsychology: a Journal on Normal and Abnormal Development in Childhood and Adolescence
https://www.readbyqxmd.com/read/28111890/psychosocial-aspects-of-children-and-families-treated-with-hemodialysis
#15
Anna Medyńska, Danuta Zwolińska, Ryszard Grenda, Monika Miklaszewska, Maria Szczepańska, Agnieszka Urzykowska, Katarzyna Zachwieja, Katarzyna Kiliś-Pstrusińska
INTRODUCTION: The aim of this study was to analyze the selected psychosocial aspects of chronic kidney disease in children treated with hemodialysis (HD). METHODS: The study included 25 children treated with HD aged 2 to 18 years and their parents. Data concerning the illness and socio-demographic parameters was collected. We used the Paediatric Quality of Life Inventory (PedsQL) for patients and for their parents the PedsQL-proxy version, General Health Questionnaire (GHQ-12), Berlin Social Support Scales (BSSS), and the Caregivers Burden Scale (CBS) to evaluate health-related quality of life (QoL) of HD children and their primary caregivers...
January 23, 2017: Hemodialysis International
https://www.readbyqxmd.com/read/28105733/vitamin-d-supplementation-for-sickle-cell-disease
#16
REVIEW
Htoo Htoo Kyaw Soe, Adinegara Bl Abas, Nan Nitra Than, Han Ni, Jaspal Singh, Abdul Razzak Bin Mohd Said, Ifeyinwa Osunkwo
BACKGROUND: Sickle cell disease is a genetic chronic haemolytic and pro-inflammatory disorder. The clinical manifestations of sickle cell disease result from the presence of mutations on the beta globin genes that generate an abnormal haemoglobin product (called haemoglobin S) within the red blood cell. Sickle cell disease can lead to many complications such as acute chest syndrome, stroke, acute and chronic bone complications (including painful vaso-occlusive crisis, osteomyelitis, osteonecrosis and osteoporosis)...
January 20, 2017: Cochrane Database of Systematic Reviews
https://www.readbyqxmd.com/read/28103872/the-use-of-the-eq-5d-y-health-related-quality-of-life-outcome-measure-in-children-in-the-western-cape-south-africa-psychometric-properties-feasibility-and-usefulness-a-longitudinal-analytical-study
#17
Des Scott, Gillian D Ferguson, Jennifer Jelsma
BACKGROUND: The EQ-5D-Y, an outcome measure of Health Related Quality of Life (HRQoL) in children, was developed by an international task team in 2010. The multinational feasibility, reliability and validity study which followed was undertaken with mainly healthy children. The aim of this study was to investigate the psychometric properties of the EQ-5D-Y when used to assess the HRQoL of children with different health states. METHOD: A sample of 224 children between eight and twelve years were grouped according to their health state...
January 19, 2017: Health and Quality of Life Outcomes
https://www.readbyqxmd.com/read/28102156/quality-of-life-in-pediatric-patients-with-avascular-necrosis-of-the-femoral-head
#18
Luanne Lísle Dos Santos Silva, Marilda Castelar, Marcos Almeida Matos
BACKGROUND: The aim of the present study was to evaluate health-related quality of life in pediatric patients with avascular necrosis of the femoral head. MATERIAL AND METHODS: A comparative study was conducted involving 32 children and adolescents in "ONFH Group" (subjects with a diagnosis of ONFH) and 44 in "Comparison Group" (asymptomatic children), both aged between 8 and 18. Clinical and sociodemographic data were obtained along with PedsQL 4.0 questionnaires to evaluate the quality of life in the age-ranges studied...
October 28, 2016: Ortopedia, Traumatologia, Rehabilitacja
https://www.readbyqxmd.com/read/28090740/the-impact-of-a-creative-play-intervention-on-satisfaction-with-nursing-care-a-mixed-methods-study
#19
Emel Teksoz, Ibrahim Bilgin, Suna Eryigit Madzwamuse, Ayse Ferda Oscakci
PURPOSE: Hospitalisation can lead to distress for children. Creative play may reduce the adverse effects of hospitalisation on children, as it could lead to children associating satisfaction and fun with their hospital experience. The aim of the current study is to investigate the impact of a creative play intervention on service-care satisfaction measurements of children and their parents. DESIGN AND METHODS: A mixed-methods design consisting of quantitative pre/post-assessments and qualitative interviews was used within this study...
January 16, 2017: Journal for Specialists in Pediatric Nursing: JSPN
https://www.readbyqxmd.com/read/28090350/longitudinal-quality-of-life-improvement-in-underserved-rural-youth-with-obesity
#20
S Engebretsen, R Sorrells, J P Yi-Frazier, K Briggs Early
OBJECTIVE: ACT! (Actively Changing Together) is a family- and community-based intervention targeting youth with obesity. The objective of this study was to establish the longitudinal impact on Health-Related Quality of Life (HRQoL) as well as the relationship with anthropometric and demographic factors. METHODS: Youth (n = 75) aged 8-14 years meeting criteria for overweight or obesity were referred to the programme. Twelve, 90-min classes in English and Spanish were held at the YMCA...
December 2016: Obesity Science & Practice
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