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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 Vaughan Dark, Cristiane B Bendo, John F Pohl
OBJECTIVES: To investigate the multidimensional gastrointestinal symptoms predictors of generic health-related quality of life (HRQOL) in pediatric patients with inflammatory bowel disease (IBD) from the perspectives of pediatric patients and parents. METHODS: The Pediatric Quality of Life Inventory (PedsQL) Gastrointestinal Symptoms Scales and PedsQL 4.0 Generic Core Scales were completed in a 9-site study by 260 families of patients with IBD. Gastrointestinal Symptoms Scales measuring stomach pain, food and drink limits, gas and bloating, constipation, blood in stool, and diarrhea were identified as clinically important symptom differentiators from healthy controls based on prior findings, and subsequently tested for bivariate and multivariate linear associations with overall HRQOL (Generic Core Scales)...
October 5, 2016: Journal of Pediatric Gastroenterology and Nutrition
James W Varni, Robert J Shulman, Mariella M Self, Samuel Nurko, Miguel Saps, Shehzad A Saeed, Ashish S Patel, Chelsea Vaughan Dark, Cristiane B Bendo, John F Pohl
OBJECTIVES: To investigate the patient-reported multidimensional gastrointestinal symptoms predictors of generic health-related quality of life (HRQOL) in pediatric patients with functional gastrointestinal disorders (FGIDs). METHODS: The Pediatric Quality of Life Inventory™ (PedsQL™) Gastrointestinal Symptoms Scales and PedsQL™ 4.0 Generic Core Scales were completed in a 9-site study by 259 pediatric patients with functional constipation, functional abdominal pain (FAP), or irritable bowel syndrome (IBS)...
October 14, 2016: Quality of Life Research
Wanda G Wright, Avron Spiro, Judith A Jones, Sharron E Rich, Raul I Garcia
OBJECTIVE: The aim of this study was to develop the Teen Oral Health-Related Quality of Life instrument (TOQOL) and demonstrate its validity and reliability in a diverse sample of 13-18-year-old adolescents. METHODS: A total of 363 adolescents aged 13-18 years participated in this cross sectional study. Oral screening examinations were conducted to collect oral health status data. Adolescents completed the TOQOL and a generic measure of health-related quality of life, the PedsQL...
October 12, 2016: Journal of Public Health Dentistry
Ying Chang, Yanhui Luo, Yuchen Zhou, Ruixin Wang, Na Song, Guanghua Zhu, Bin Wang, Maoquan Qin, Jun Yang, Yuan Sun, Chunfu Li, Xuan Zhou
BACKGROUND: Long-term health-related quality of life (HRQoL) of pediatric patients after hematopoietic stem cell transplantation (HSCT) is increasingly studied worldwide. However, few studies have been performed in China, where no uniform scale is available; the PedsQL™ Cancer Module 3.0 Chinese Mandarin version has been used to evaluate HRQoL of patients after HSCT in China. This study aimed to assess the reliability and validity of the Chinese Mandarin version of PedsQL™ 3.0 Transplant Module...
October 5, 2016: Health and Quality of Life Outcomes
Alison M DaCosta, Courtney B Sweet, Lisa R Garavaglia, Francis L Casey, Jeffrey D Lancaster
OBJECTIVES: This pilot study investigated the feasibility and effect on health care utilization of medically complex children participating in a pharmacist-led model for care coordination. Quality of life and satisfaction with care were secondarily assessed for each patient. METHODS: Four medically complex children were enrolled and contacted by the pharmacist weekly for 5 consecutive months. Time for each encounter with a patient was collected. Each patient's hospital admissions, days of stay, emergency department visits, and clinic visits were recorded...
July 2016: Journal of Pediatric Pharmacology and Therapeutics: JPPT: the Official Journal of PPAG
Karnika Raja, Ami Parikh, Hazel Webb, Daljit Hothi
BACKGROUND: Relapses of nephrotic syndrome are common and are treated with a course of prednisolone (2 mg/kg/day or 60 mg/m(2)/day). This is associated with major adverse effects including diabetes, weight gain, hypertension and behavioural problems. This study is a retrospective review examining the success of treating relapses in steroid-sensitive nephrotic syndrome (SSNS) with low-dose prednisolone and the consequences on subsequent relapse rates. Furthermore, a follow-up study looked at the side-effect profile during treatment with high- versus low-dose prednisolone...
September 27, 2016: Pediatric Nephrology: Journal of the International Pediatric Nephrology Association
Mathilde Chevignard, Leila Francillette, Hanna Toure, Dominique Brugel, Philippe Meyer, Anne Laurent Vannier, Marion Opatowski, Laurence Watier
OBJECTIVE: Childhood traumatic brain injury (TBI) is the first cause of death and acquired disability and it represents a major public health issue. Childhood severe TBI can lead to motor, cognitive, behavioural and social cognition deficits, which have consequences on academic achievement, social integration, participation and quality of life. Consequences may only appear after a delay, when the skills are supposed to be fully developed. The aim of this study was to prospectively assess academic outcome, health-related quality of life (HRQoL), amount of ongoing care and participation, following childhood severe traumatic brain injury (TBI) over 7-8years post-injury, in comparison with a matched uninjured control group...
September 2016: Annals of Physical and Rehabilitation Medicine
Pınar Uran, Esra Yürümez, Ayla Aysev, Birim Günay Kılıç
OBJECTIVE: Adolescents who were admitted to the child and adolescent psychiatry clinic were compared with respect to the premenstrual symptom severity, psychiatric comorbidities and health related quality of life (HRQoL). METHODS: The research group was identified using the Schedule for Affective Disorders and Schizophrenia for School-Age Children-Present and Lifetime Version and Premenstrual Assessment Form. They completed the Pediatric Quality of Life Inventory (The PedsQL)...
September 27, 2016: International Journal of Psychiatry in Clinical Practice
Alan C Sing, Stephen Tsaur, Stephen M Paridon, Julie A Brothers
BACKGROUND: Anomalous aortic origin of a coronary artery is a congenital cardiac condition that can be associated with increased risk of sudden death. To date, quality of life and exercise performance have not been evaluated in patients with this condition who do not undergo surgical repair. METHODS: We carried out a cross-sectional analysis of patients with unoperated anomalous aortic origin of a coronary artery at our institution from 1 January, 2000 to 31 January, 2016...
September 26, 2016: Cardiology in the Young
Bryan H Goldstein, Elaine M Urbina, Philip R Khoury, Zhiqian Gao, Michelle A Amos, Wayne A Mays, Andrew N Redington, Bradley S Marino
BACKGROUND: Fontan survivors demonstrate diminished vascular function and functional outcomes, but the relationships between these measures have not been established. METHODS AND RESULTS: We performed a cross-sectional study of 60 Fontan survivors (52% male) with a mean age of 13.9±4.1 years and mean Fontan duration of 9.9±4.2 years. Multimodality assessment of endothelial function (reactive hyperemia index and flow-mediated dilation) and arterial stiffness (augmentation index and baseline pulse amplitude) was performed with peripheral arterial tonometry and brachial flow-mediated dilation...
2016: Journal of the American Heart Association
Inge J P Serkel-Schrama, Jolanda de Vries, Anke M Nieuwesteeg, Frans Pouwer, Ivan Nyklíček, Jane Speight, Esther I de Bruin, Susan M Bögels, Esther E Hartman
The objective of this study was to examine associations between the mindful parenting style of parents of adolescents (aged 12-18) with type 1 diabetes mellitus (T1DM), and the glycaemic control and quality of life (QoL) of the adolescents. Chronic health conditions, such as T1DM, that require demanding treatment regimens, can negatively impact adolescents' quality of life. Therefore, it is important to determine whether mindful parenting may have a positive impact in these adolescents. Age, sex and duration of T1DM were examined as potential moderators...
2016: Mindfulness
S Phadnis, A Kar
INTRODUCTION: The impact of haemophilia education on the quality of life of parents of children with haemophilia from low income settings has not been studied. AIM: The purpose of this study was to determine the impact of an education intervention on health related quality of life (HRQOL) of parents of children with haemophilia, parent's knowledge about haemophilia and its management, and to determine whether education about haemophilia can positively impact these outcomes...
September 19, 2016: Haemophilia: the Official Journal of the World Federation of Hemophilia
Hadeel A-I Abdul-Zahra, Mea'ad K Hassan, Bahaa A A H Ahmed
Few studies have investigated the quality of life of children with thalassemia in the Middle East or Mediterranean region, especially Iraq. Therefore, this study was performed to assess the health-related quality of life (HRQoL) of patients with β-thalassemia major compared with healthy children and adolescents in the same age group and to evaluate the effects of different iron chelators on HRQoL measurements. A case-control study was performed on patients with β-thalassemia major registered at the Center for Hereditary Blood Diseases in Basra from February 2012 through July 2013...
October 2016: Journal of Pediatric Hematology/oncology
Chung-Ying Lin, Santhosh Kumar, Amir H Pakpour
BACKGROUND: The study aimed to further evaluate the psychometric properties of one recently developed oral health related quality of life (OHRQoL) instrument (PedsQL Oral Health Scale), including student self-report and parent-proxy report. Specifically, we tested the item validity,threshold order, local dependency, and differential item functioning (DIF) across gender and rater. METHODS: This is a cross-sectional study, and study population was recruited in Qazvin, Iran using one-stage sampling with the unit of school...
2016: Health Promotion Perspectives
Claudia Marcela Vélez, Adriana C Villada Ramírez, Ana Carolina Amaya Arias, Javier H Eslava-Schmalbach
INTRODUCTION: The aim of this study was to validate the PedsQL 4.0™ in Colombian children and adolescents using the Rasch model. The Paediatric Quality of Life Inventory (PedsQL 4.0™) has demonstrated to be a reliable and sensitive measurement to changes in health status, as well as being quick and easy to use. METHODS: Validation study of measurement tools. The PedsQL 4.0™ was applied to a convenience sample of 375 children and adolescents between 5 and 17 years old and 500 caregivers of children between 2 and 18 years old in five Colombian cities...
July 2016: Revista Colombiana de Psiquiatría
F van Markus-Doornbosch, A J de Kloet, M A M Berger, S A M Lambregts, R Wolterbeek, T P M Vliet Vlieland
OBJECTIVE: To assess the degree of fatigue in children and youth after traumatic and non-traumatic brain injury (TBI and NTBI) and related factors. METHOD: Follow-up study including patients with a hospital-based diagnosis of acquired brain injury (ABI), aged 4-20 years at onset and their parents. Parents and children (dependent on age) completed the Paediatric Quality of Life Inventory™ Multidimensional Fatigue Scale (PedsQL™ MFS), which measures general fatigue (GF), sleep/rest fatigue (SRF) and cognitive fatigue (CF)...
August 26, 2016: Brain Injury: [BI]
S A R Nouraei, E Mucmur, A Dias, C R Butler, R Nandi, M J Eliott, R Hewitt
OBJECTIVE: To validate the airway-dyspnoea-voice-swallow (ADVS) instrument as a disease-specific patient-reported outcome measure in paediatric laryngotracheal stenosis. DESIGN: Prospective observational study. SETTING: A quaternary referral centre for complex airway disease. PARTICIPANTS: Forty eight patients (30 males) with a means age of 49±49 months who underwent laryngotracheal surgery or microlaryngosocpy and bronchoscopy (MLB) following laryngotracheal surgery...
August 20, 2016: Clinical Otolaryngology
Isaac Josh Abecassis, John D Nerva, Jason Barber, Jason Rockhill, Richard G Ellenbogen, Louis J Kim, Laligam N Sekhar
OBJECTIVE Brain arteriovenous malformations (bAVMs) are rare in pediatric patients but represent the most common cause of hemorrhagic stroke in this population. Pediatric patients demonstrate superior outcomes in comparison with adult patients with similar lesions and presentations. Most studies of clinical outcomes of pediatric bAVMs use the modified Rankin Scale (mRS), despite a lack of validation in pediatric patients. METHODS The authors interviewed the parents of 26 pediatric patients who underwent multimodality bAVM treatment and administered the Pediatric Quality of Life Inventory (PedsQL)-a well-validated tool for pediatric outcomes that quantifies performance in a physical, emotional, social, and school domains...
August 19, 2016: Journal of Neurosurgery. Pediatrics
Luci Wiggs, Masako Sparrowhawk, Anna L Barnett
BACKGROUND: Impaired sleep is associated with negative effects on quality of life and daytime functioning. Higher rates of sleep disturbance are reported in children with various developmental disorders. However, little is known about sleep in children with developmental coordination disorder (DCD), a condition characterized by everyday movement difficulties. Previously, in a preliminary study, we found higher rates of parent-reported sleep disturbance in children with DCD compared to controls...
2016: Frontiers in Pediatrics
Song Li, Qiao-Ling Sun, Yi Zhou, Yue Zhang, Xun-Jia Hu, Wei-Sheng Hong, Guo-Ping Ji
OBJECTIVE: To investigate the factors influencing the quality of life (QOL) of children with phenylketonuria (PKU) in Anhui Province, China. METHODS: A total of 104 PKU children who were diagnosed and treated in three major maternal and child health hospitals in Anhui Province were enrolled as study subjects. The PedsQL™ 4.0 Generic Core Scales were used to evaluate the quality of life of these children. The multivariate logistic regression analysis was used to evaluate the factors influencing the QOL...
August 2016: Zhongguo Dang Dai Er Ke za Zhi, Chinese Journal of Contemporary Pediatrics
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