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https://www.readbyqxmd.com/read/28425236/predictors-of-health-related-quality-of-life-in-childhood-epilepsy-and-comparison-with-healthy-children-findings-from-an-indian-study
#1
Dipika Bansal, Chandrika Azad, Kapil Gudala, Anil Dasari
BACKGROUND/AIM: Children with epilepsy have reduced health-related quality of life (HRQOL) due to disease and medications. We aimed to assess child-reported HRQOL in Indian children with epilepsy and compare it with that in healthy children. MATERIALS AND METHODS: A cross-sectional study of 256 children with epilepsy aged between 5 and 18 years on antiepileptic drug (AED) treatment for at least 3 months was performed and 125 age and sex matched healthy children were included...
April 18, 2017: Turkish Journal of Medical Sciences
https://www.readbyqxmd.com/read/28386989/predictors-of-oral-health-related-quality-of-life-in-iranian-adolescents-a-prospective-study
#2
Amir H Pakpour, Chung-Ying Lin, Santhosh Kumar, Bengt Fridlund, Henrik Jansson
AIM: In the present study, we evaluated the direct and mediating (indirect) effects of clinical oral conditions, dental anxiety, sense of coherence (SOC), and socioeconomic variables on oral health-related quality of life (OHRQoL) and general health-related quality of life (GHRQoL) in Iranian adolescents. METHODS: A longitudinal design was used with a sample of 1052 (694 males, mean age=15.05 years) schoolchildren from Qazvin, Iran. Each participant completed a background information sheet and the following scales at baseline: Modified Dental Anxiety Scale, SOC, PedsQL 4...
April 6, 2017: Journal of Investigative and Clinical Dentistry
https://www.readbyqxmd.com/read/28385300/quality-of-life-and-functional-vision-in-children-with-glaucoma
#3
Annegret Dahlmann-Noor, Vijay Tailor, Catey Bunce, Yassir Abou-Rayyah, Gillian Adams, John Brookes, Peng T Khaw, Maria Papadopoulos
PURPOSE: To evaluate the effect of glaucoma on functional vision and on vision-related (VR) and health-related (HR) quality of life (QoL) in children up to 16 years of age. DESIGN: Cross-sectional observational study. PARTICIPANTS: One hundred nineteen children 2 to 16 years of age (mean age, 9.4 years; standard deviation [SD], 4.56 years) with glaucoma and their parents. METHODS: Completion of 3 validated instruments for children to assess (1) functional visual ability (FVA) with the Cardiff Visual Ability Questionnaire for Children (CVAQC), (2) VR QoL with the Impact of Vision Impairment for Children (IVI-C), and (3) HR QoL with the Pediatric Quality of Life Inventory (PedsQL) version 4...
April 3, 2017: Ophthalmology
https://www.readbyqxmd.com/read/28371742/measuring-stigma-in-children-receiving-mental-health-treatment-validation-of-the-paediatric-self-stigmatization-scale-paeds
#4
A Kaushik, E Papachristou, D Dima, S Fewings, E Kostaki, G B Ploubidis, M Kyriakopoulos
BACKGROUND: Research on the impact of stigma associated with mental illness in children is scarce. Considering the known negative effects of stigma associated with mental illness in adults, it is crucial to explore the stigma experienced by children who access mental health treatment. However, no scale measuring self-stigmatization in younger children is available to date. This study aimed to develop and validate such a scale, the Paediatric Self-Stigmatization Scale (PaedS). METHODS: A total of 156 children (119 receiving outpatient and 37 receiving inpatient treatment), aged 8-12 years, completed the PaedS, the Self-Perception Profile for Children and the Pediatric Quality of Life Inventory (PedsQL - Child Report, ages 8-12)...
February 3, 2017: European Psychiatry: the Journal of the Association of European Psychiatrists
https://www.readbyqxmd.com/read/28366348/quality-of-life-and-excessive-daytime-sleepiness-in-children-and-adolescents-with-myotonic-dystrophy-type-1
#5
Genevieve Ho, John Widger, Michael Cardamone, Michelle A Farrar
OBJECTIVES: Myotonic dystrophy type 1 (DM1) is an autosomal dominant neuromuscular disease with variable severity that affects all ages. Sleepiness is an important co-morbidity affecting a large proportion of paediatric DM1 patients. The current study examined the relationship between sleepiness and quality of life in a paediatric DM1 cohort. METHODS: A cross-sectional study was conducted in children and adolescents with DM1 attending a multi-disciplinary neuromuscular clinic in a tertiary paediatric centre...
April 2017: Sleep Medicine
https://www.readbyqxmd.com/read/28358233/measurement-of-health-related-quality-of-life-in-primary-antibody-deficient-patients
#6
Bahar Ataeinia, Ali Montazeri, Marzieh Tavakol, Gholamreza Azizi, Fatemeh Kiaee, Naiimeh Tavakolinia, Babak Negahdari, Javad Mohammadi, Hassan Abolhassani, Nima Rezaei, Asghar Aghamohammadi
BACKGROUND: Primary immunodeficiency diseases are a group of disorders that result from a variety of defects of the immune system. Primary antibody deficiencies (PADs) are the most common forms of these disorders. Occurrence of recurrent infections, autoimmune diseases, cancers, and lymphoproliferative disorders is higher in PAD patients. Chronicity of these diseases, delayed diagnosis, inadequate treatment, and treatment side effects may affect the quality of life (QoL) of PAD patients...
March 30, 2017: Immunological Investigations
https://www.readbyqxmd.com/read/28300654/the-cumulative-impact-of-health-adversities-on-children-s-later-academic-achievement
#7
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
#8
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
#9
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
#10
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
#11
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
#12
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
#13
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
#14
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
#15
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
#16
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
#17
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
#18
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
#19
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
#20
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...
April 2017: Journal for Specialists in Pediatric Nursing: JSPN
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