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https://www.readbyqxmd.com/read/28300654/the-cumulative-impact-of-health-adversities-on-children-s-later-academic-achievement
#1
Jon Quach, Cattram Nguyen, Meredith O'Connor, Melissa Wake
OBJECTIVE: We aimed to determine whether the accumulation of physical, psychosocial and combined health adversities measured at age 8-9 years predicts worsening of academic scores cross-sectionally at 8-9 and longitudinally at 10-11 years. METHODS: Design: Longitudinal data from Waves 3 and 4 in the Longitudinal Study of Australian Children (83% of 4983 retained). Exposures (8-9 years): Physical health adversities (yes/no; summed range 0-5): overweight, special health care needs, chronic illness, PedsQL Physical, global health...
March 11, 2017: Academic Pediatrics
https://www.readbyqxmd.com/read/28273780/risk-factors-for-non-adherence-to-disease-modifying-therapy-in-pediatric-multiple-sclerosis
#2
Carolyn E Schwartz, Stephanie A Grover, Victoria E Powell, Austin Noguera, Jean K Mah, Soe Mar, Lauren Mednick, Brenda L Banwell, Gulay Alper, Mary Rensel, Mark Gorman, Amy Waldman, Teri Schreiner, Emmanuelle Waubant, E Ann Yeh
BACKGROUND: Adherence to disease-modifying therapies (DMTs) in pediatric multiple sclerosis (MS) is not well understood. We examined the prevalence and risk factors for poor adherence in pediatric MS. METHODS: This cross-sectional study recruited youth with MS from 12 North American pediatric MS clinics. In addition to pharmacy-refill data, patients and parents completed self-report measures of adherence and quality of life. Additionally, patients completed measures of self-efficacy and well-being...
February 1, 2017: Multiple Sclerosis: Clinical and Laboratory Research
https://www.readbyqxmd.com/read/28271316/psychometric-evaluation-of-the-pediatric-and-parent-proxy-patient-reported-outcomes-measurement-information-system-and-the-neurology-and-traumatic-brain-injury-quality-of-life-measurement-item-banks-in-pediatric-traumatic-brain-injury
#3
Hilary Bertisch, Frederick P Rivara, Pamela A Kisala, Jin Wang, Keith Owen Yeates, Dennis Durbin, Mark R Zonfrillo, Michael J Bell, Nancy Temkin, David S Tulsky
PURPOSE: The primary objective is to provide evidence of convergent and discriminant validity for the pediatric and parent-proxy versions of the Patient-Reported Outcomes Measurement Information System (PROMIS) Anxiety, Depression, Anger, Peer Relations, Mobility, Pain Interference, and Fatigue item banks, the Neurology Quality of Life measurement system (Neuro-QOL) Cognition-General Concerns and Stigma item banks, and the Traumatic Brain Injury Quality of Life (TBI-QOL) Executive Function and Headache item banks in a pediatric traumatic brain injury (TBI) sample...
March 7, 2017: Quality of Life Research
https://www.readbyqxmd.com/read/28261374/the-impact-on-quality-of-life-on-families-of-children-on-an-elimination-diet-for-non-immunoglobulin-e-mediated-gastrointestinal-food-allergies
#4
Rosan Meyer, Heather Godwin, Robert Dziubak, Julie A Panepinto, Ru-Xin M Foong, Mandy Bryon, Adriana Chebar Lozinsky, Kate Reeve, Neil Shah
BACKGROUND: The impact on health related quality of life (HRQL) has been well studied in children with Immunoglobulin E (IgE)-mediated food allergy. However limited data exists on related quality of life (QOL) of families who have a child suffering from food protein induced non-IgE mediated gastrointestinal allergies. We aimed to establish the QOL of families with children at the beginning of following an elimination diet for non-IgE mediated gastrointestinal food allergies. METHODS: A prospective, observational study was performed...
2017: World Allergy Organization Journal
https://www.readbyqxmd.com/read/28258590/health-related-quality-of-life-among-children-with-hereditary-angioedema
#5
Batya Engel-Yeger, Henriette Farkas, Shmuel Kivity, Nóra Veszeli, Kinga Viktória Kőhalmi, Aharon Kesssel
BACKGROUND: The clinical expressions of hereditary angioedema with C1-inhibitor deficiency (C1-INH-HAE) and its related burden may negatively affect patient quality of life. This study aims to assess health-related quality of life (HRQoL) in children with C1-INH-HAE. METHODS: Children (N=98: 34 C1-INH-HAE patients, 64 healthy controls) aged 3-18 years were recruited in Israel and Hungary. All individuals completed a demographic questionnaire, a disease activity and site questionnaire, and the Pediatric Quality of Life Inventory (PedsQL(™) ) 4...
March 4, 2017: Pediatric Allergy and Immunology
https://www.readbyqxmd.com/read/28252669/association-of-blood-heavy-metals-with-developmental-delays-and-health-status-in-children
#6
Yu-Mei Hsueh, Chih-Ying Lee, Ssu-Ning Chien, Wei-Jen Chen, Horng-Sheng Shiue, Shiau-Rung Huang, Ming-I Lin, Shu-Chi Mu, Ru-Lan Hsieh
The aim of this study was to evaluate the association of blood lead, mercury, and cadmium concentrations with developmental delays and to explore the association of these concentrations with the health status of children. This study recruited 89 children with developmental delays and 89 age- and sex-matched children with typical development. Their health status was evaluated using the Pediatric Quality of Life (PedsQL) Inventory for health-related quality of life (HRQOL) and the Pediatric Outcomes Data Collection Instrument for function...
March 2, 2017: Scientific Reports
https://www.readbyqxmd.com/read/28236729/parental-stress-pediatric-quality-of-life-and-behavior-at-baseline-and-one-year-follow-up-results-from-the-febstat-study
#7
Ruth C Shinnar, Shlomo Shinnar, Dale C Hesdorffer, Kathryn O'Hara, Terrie Conklin, Karen Mohler Cornett, Diana Miazga, Shumei Sun
Febrile status epilepticus is a serious and frightening event in the life of the child and parent. It is regarded as a medical emergency with potential long lasting consequences. The purpose of this study was to look at the immediate and long term effects of such an event on parental stress and parents' perception of their child's physical and psychosocial wellbeing. METHODS: From 2003 to 2010, 199 subjects, age 1 month to 5 years, were recruited as part of a prospective, multicenter study (FEBSTAT) of consequences of febrile status epilepticus (FSE)...
February 22, 2017: Epilepsy & Behavior: E&B
https://www.readbyqxmd.com/read/28223051/functional-status-and-quality-of-life-in-survivors-of-extracorporeal-membrane-oxygenation-after-the-norwood-operation
#8
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
#9
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
#10
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
#11
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
#12
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
#13
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
#14
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
#15
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
#16
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
#17
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
#18
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
#19
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
#20
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
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