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https://www.readbyqxmd.com/read/28927976/quality-of-life-outcomes-in-children-with-hirschsprung-disease
#1
Lucy Collins, Brennan Collis, Misel Trajanovska, Rija Khanal, John M Hutson, Warwick J Teague, Sebastian K King
BACKGROUND: Morbidity following repair of Hirschsprung disease (HD) is common. However, quality of life (QoL) results focused on HD children are contradictory. We aimed to measure QoL outcomes in HD children using validated questionnaires. METHODS: Patients with HD, managed at a large tertiary pediatric institution between 2004 and 2013, were identified. Parents completed validated questionnaires. Results were compared with published healthy population controls...
September 2, 2017: Journal of Pediatric Surgery
https://www.readbyqxmd.com/read/28922259/gastrointestinal-symptoms-of-food-challenge-proven-non-ige-cow-s-milk-allergy-are-dissipated-by-early-school-age
#2
Noora Helin, Kaija-Leena Kolho, Erik Qvist, Mika Mäkelä, Laura Merras-Salmio
OBJECTIVES: To evaluate the current well-being and dietary restrictions in children six years after food challenge confirmed diagnosis of non-IgE cow's milk protein allergy, compared to peers with gastrointestinal symptoms but negative food challenge. To evaluate the diagnostic process retrospectively. METHODS: Internet-based survey for mothers whose children underwent six years ago the double-blind, placebo-controlled food challenge for cow's milk because of gastrointestinal symptoms causing suspicion of non-IgE cow's milk protein allergy...
September 16, 2017: Journal of Pediatric Gastroenterology and Nutrition
https://www.readbyqxmd.com/read/28916047/anorectal-malformation-hirschsprung-s-disease-a-cross-sectional-comparison-of-quality-of-life-and-bowel-function-to-healthy-controls
#3
Shireen Anne Nah, Caroline C P Ong, Seyed Ehsan Saffari, Lin Yin Ong, Te-Lu Yap, Yee Low, Anette S Jacobsen
BACKGROUND: Patients with anorectal malformation (ARM) and Hirschsprung's disease (HD) face long-term disturbance in bowel function even after definitive surgery. This study evaluates the quality of life (QOL) of patients with ARM and HD, and compares them to healthy controls using self-report questionnaires. METHODOLOGY: A prospective study was performed recruiting patients with ARM or HD from September 2013 to December 2014 who had primary surgery done in our institution at least 2 years prior to participation...
August 25, 2017: Journal of Pediatric Surgery
https://www.readbyqxmd.com/read/28914364/unhealthy-lifestyle-habits-and-diabetes-specific-health-related-quality-of-life-in-youths-with-type-1-diabetes
#4
Enza Mozzillo, Eugenio Zito, Claudio Maffeis, Elena De Nitto, Giulio Maltoni, Marco Marigliano, Stefano Zucchini, Adriana Franzese, Giuliana Valerio
AIMS: Management of type 1 diabetes mellitus (T1DM) influences several aspects of life, such as adherence to healthy lifestyle habits and health-related quality of life (HRQoL). Our aim was to evaluate the association between unhealthy lifestyle habits and HRQoL in adolescents and young adults with T1DM. METHODS: Two hundred and forty-two Caucasian patients (13-19 years) consecutively enrolled over a 12-month period in three Regional Pediatric Diabetes Centers in Italy...
September 15, 2017: Acta Diabetologica
https://www.readbyqxmd.com/read/28910513/quality-of-life-outcomes-following-pediatric-lung-transplantation
#5
Tanya Lazor, Hartmut Grasemann, Melinda Solomon, Samantha J Anthony
PURPOSE: Compared to other solid organs, survival after lung transplantation (LTx) is still poor. Discussions on survival benefits following LTx in children, however, have largely concentrated on medical outcome data. Little research describes quality of life (QoL) of pediatric LTx recipients, which is partly due to the small number of pediatric LTxs performed. Only two centers worldwide performed >10 pediatric LTxs in 2013, making data on QoL in this population difficult to obtain...
September 14, 2017: Pediatric Pulmonology
https://www.readbyqxmd.com/read/28904639/a-comparison-of-functional-outcome-between-amputation-and-extension-prosthesis-in-the-treatment-of-congenital-absence-of-the-fibula-with-severe-limb-deformity
#6
P Calder, S Shaw, A Roberts, S Tennant, I Sedki, R Hanspal, D Eastwood
PURPOSE: Complete fibula absence often presents with significant lower-limb deformity. Parental counselling regarding management is paramount in achieving the optimum functional outcome. Amputation offers a single surgical event with minimal complications. This study compares outcomes with an amputation protocol to those using an extension prosthesis. METHOD: Thirty-two patients were identified. Nine patients (2 males, 7 females; median age at assessment of 23...
August 1, 2017: Journal of Children's Orthopaedics
https://www.readbyqxmd.com/read/28901536/validation-of-the-pedsql-epilepsy-module-a-pediatric-epilepsy-specific-health-related-quality-of-life-measure
#7
Avani C Modi, Katherine F Junger, Constance A Mara, Tanja Kellermann, Lauren Barrett, Janelle Wagner, Grace A Mucci, Laurie Bailey, Dace Almane, Shanna M Guilfoyle, Lauryn Urso, Brooke Hater, Heather Hustzi, Gigi Smith, Bruce Herrmann, M Scott Perry, Mary Zupanc, James W Varni
OBJECTIVE: To validate a brief and reliable epilepsy-specific, health-related quality of life (HRQOL) measure in children with various seizure types, treatments, and demographic characteristics. METHODS: This national validation study was conducted across five epilepsy centers in the United States. Youth 5-18 years and caregivers of youth 2-18 years diagnosed with epilepsy completed the PedsQL Epilepsy Module and additional questionnaires to establish reliability and validity of the epilepsy-specific HRQOL instrument...
September 13, 2017: Epilepsia
https://www.readbyqxmd.com/read/28900536/construct-and-criterion-validity-of-the-pedsql%C3%A2-4-0-instrument-pediatric-quality-of-life-inventory-in-colombia
#8
Ana Carolina Amaya-Arias, Juan Pablo Alzate, Javier H Eslava-Schmalbach
BACKGROUND: This study aimed at determining the validity of the Pediatric Quality of Life Inventory 4.0 (PedsQL™ 4.0) for the measurement of health-related quality of life (HRQOL) in Colombian children. METHODS: Validation study of measurement instruments. The PedsQL™ 4.0 was applied by convenience sampling to 375 pairs of children and adolescents between the ages of 5 and 17 and to their parents-caregivers, as well as to 125 parents-caregivers of children between the ages of 2 and 4 in five cities of Colombia (Bogota, Medellin, Cali, Barranquilla and Bucaramanga)...
2017: International Journal of Preventive Medicine
https://www.readbyqxmd.com/read/28884265/how-is-weight-stigma-related-to-children-s-health-related-quality-of-life-a-model-comparison-approach
#9
Veronica Guardabassi, Alberto Mirisola, Carlo Tomasetto
PURPOSE: Obesity is a highly stigmatizing condition for both adults and children, and both obesity and stigma experiences are negatively related with health-related quality of life (HRQoL). However, the relations among these constructs have been modeled in different and sometimes inconsistent terms in past research, and have been the object of surprisingly few studies in pediatric populations. The present study addresses this gap by comparing, in a sample of preadolescent children, four competing models (i...
September 7, 2017: Quality of Life Research
https://www.readbyqxmd.com/read/28882351/psychological-profile-of-children-who-require-repetitive-surgical-procedures-for-early-onset-scoliosis-is-a-poorer-quality-of-life-the-cost-of-a-straighter-spine
#10
Cihan Aslan, Z Deniz Olgun, Erkan Sabri Ertas, Seniz Ozusta, Gokhan Demirkiran, Fatih Unal, Muharrem Yazici
STUDY DESIGN: Cross-sectional study. OBJECTIVE: Assess the psychosocial status of children with early-onset scoliosis (EOS) undergoing multiple procedures and evaluate associations with other variables. SUMMARY OF BACKGROUND DATA: EOS may require repetitive surgical procedures to control deformity and preserve growth. These procedures impact patients' psychosocial status because of the repetitive surgeries. METHODS: EOS patients 6-18 years, undergoing traditional growing rod treatment with more than 5 surgical procedures, and neurologically/mentally intact were included...
September 2017: Spine Deformity
https://www.readbyqxmd.com/read/28878881/tracking-low-back-pain-in-adolescent-idiopathic-scoliosis-a-prospective-cohort-study-protocol
#11
Jean Théroux, Norman Stomski, Christopher J Hodgetts, Charlotte Leboeuf-Yde, Bruce F Walker, Sylvie Le May, Hubert Labelle
BACKGROUND: Numerous methodological limitations have constrained the findings of previous studies that have examined the prevalence of low back pain in adolescents with idiopathic scoliosis. This article presents a study protocol that has been designed to address the shortcomings of prior research in this area. In addition, it will establish the level of disease burden associated with acute, recurrent, and chronic low back pain in adolescents with idiopathic scoliosis. METHODS: This study will involve a prospective cohort of adolescents with idiopathic scoliosis presenting to an outpatient department in a paediatric hospital...
2017: Chiropractic & Manual Therapies
https://www.readbyqxmd.com/read/28870494/health-related-quality-of-life-outcomes-of-a-telehealth-care-coordination-intervention-for-children-with-medical-complexity-a-randomized-controlled-trial
#12
Wendy S Looman, Robyn L Hullsiek, Lyndsay Pryor, Michelle A Mathiason, Stanley M Finkelstein
The purpose of this study was to explore health-related quality of life (HRQL) and family impact in the context of an advanced practice registered nurse-delivered telehealth care coordination intervention for children with medical complexity (CMC). This was a secondary outcomes analysis of a randomized controlled trial with 163 families of CMC in an existing medical home. HRQL and family impact were measured using the PedsQL measurement model. Bivariate and analysis of covariance analyses were conducted to explore associations at baseline and the intervention effect over 2 years...
September 1, 2017: Journal of Pediatric Health Care
https://www.readbyqxmd.com/read/28855227/health-related-quality-of-life-in-infants-and-toddlers-with-congenital-heart-disease-a-cross-sectional-survey-from-south-india
#13
Manu Raj, Abish Sudhakar, Rinku Roy, Sumi Soman, Libin Antony, Bhavik Champaneri, Raman Krishna Kumar
OBJECTIVE: There are limited data on health-related quality of life (HRQOL) for infants and toddlers with congenital heart disease (CHD). We sought to compare generic HRQOL of infants and toddlers between CHD subjects and controls. DESIGN: Dual-setting, cross-sectional analytical survey. SETTING: We collected HRQOL data on infants and toddlers through a community survey for controls and through a hospital-based survey for those with CHD. PATIENTS: A total of 499 subjects with confirmed CHD in the age group of 1-24 months admitted for elective surgery in the study institution were selected by consecutive sampling...
August 30, 2017: Archives of Disease in Childhood
https://www.readbyqxmd.com/read/28851375/health-related-quality-of-life-and-influencing-factors-among-migrant-children-in-shaoxing-china
#14
Fengjiao Xu, Haiyan Xing, Wei Yu, Sanmei Chen, Hui Li
BACKGROUND: Due to increasing export of labor service, many children following their parents leave from rural areas to urban areas in China. These migrant children might have psychological stress and lower quality of life. However, even up to this day, little is known about the health-related quality of life (HRQoL) of the migrant children. This study aims at investigating their living conditions and exploring the influencing factors of migrant children's HRQoL. METHODS: A cross-sectional survey of 856 migrant children, aged between 7 and 17, was conducted in Shaoxing...
August 30, 2017: Health and Quality of Life Outcomes
https://www.readbyqxmd.com/read/28835233/responsiveness-of-the-promis%C3%A2-measures-to-changes-in-disease-status-among-pediatric-nephrotic-syndrome-patients-a-midwest-pediatric-nephrology-consortium-study
#15
David T Selewski, Jonathan P Troost, Danyelle Cummings, Susan F Massengill, Rasheed A Gbadegesin, Larry A Greenbaum, Ibrahim F Shatat, Yi Cai, Gaurav Kapur, Diane Hebert, Michael J Somers, Howard Trachtman, Priya Pais, Michael E Seifert, Jens Goebel, Christine B Sethna, John D Mahan, Heather E Gross, Emily Herreshoff, Yang Liu, Noelle E Carlozzi, Bryce B Reeve, Darren A DeWalt, Debbie S Gipson
BACKGROUND: Nephrotic syndrome represents a condition in pediatric nephrology typified by a relapsing and remitting course, proteinuria and the presence of edema. The PROMIS measures have previously been studied and validated in cross-sectional studies of children with nephrotic syndrome. This study was designed to longitudinally validate the PROMIS measures in pediatric nephrotic syndrome. METHODS: One hundred twenty seven children with nephrotic syndrome between the ages of 8 and 17 years participated in this prospective cohort study...
August 23, 2017: Health and Quality of Life Outcomes
https://www.readbyqxmd.com/read/28831635/a-multicenter-observational-prospective-study-of-self-and-parent-reported-quality-of-life-in-adolescent-multiple-sclerosis-patients-self-administering-interferon-%C3%AE-1a-using-rebismart%C3%A2-the-future-study
#16
A Ghezzi, A Bianchi, D Baroncini, A Bertolotto, S Malucchi, V Bresciamorra, R Lanzillo, N Milani, V Martinelli, F Patti, C Chisari, M Rottoli, M Simone, D Paolicelli, A Visconti
Besides the impact of disease per se, the use of immunomodulatory therapies in adolescents with relapsing-remitting multiple sclerosis (RRMS) may have an effect on quality of life (QL). The FUTURE (Quality of liFe in adolescent sUbjecTs affected by mUltiple sclerosis treated with immunomodulatoRy agEnt using self-injecting device) study was designed to evaluate the changes in QL of Italian adolescents with RRMS receiving treatment with IFN-β1a (Rebif; 22 μg), administered subcutaneously three times weekly using the RebiSmart™ electronic autoinjection device over a 52-week period...
August 22, 2017: Neurological Sciences
https://www.readbyqxmd.com/read/28815341/de-novo-weekly-and-biweekly-darbepoetin-alfa-dosing-in-pediatric-patients-with-chronic-kidney-disease
#17
Bradley A Warady, John Barcia, Nadine Benador, Augustina Jankauskiene, Kurt Olson, Ludmila Podracka, Aleksey Shavkin, Poyyapakkam Srivaths, Cynthia J Wong, Jeffrey Petersen
BACKGROUND: Darbepoetin alfa is a commonly prescribed erythropoiesis-stimulating agent (ESA) for correcting anemia in pediatric chronic kidney disease (CKD) patients. However, little information exists on its use in ESA-naïve patients. This study evaluated the efficacy and safety of darbepoetin alfa in pediatric patients initiating ESA therapy. METHODS: One-hundred sixteen pediatric ESA-naïve subjects (aged 1-18 years) with CKD stages 3-5D and hemoglobin (Hb) <10 g/dl from 43 centers in the US, Europe, and Mexico were randomized by age (three groups) and dialysis status (yes vs...
August 17, 2017: Pediatric Nephrology: Journal of the International Pediatric Nephrology Association
https://www.readbyqxmd.com/read/28814619/time-use-patterns-and-health-related-quality-of-life-in-adolescents
#18
Monica Wong, Tim Olds, Lisa Gold, Kate Lycett, Dorothea Dumuid, Josh Muller, Fiona K Mensah, David Burgner, John B Carlin, Ben Edwards, Terence Dwyer, Peter Azzopardi, Melissa Wake
OBJECTIVES: To describe 24-hour time-use patterns and their association with health-related quality of life (HRQoL) in early adolescence. METHODS: The Child Health CheckPoint was a cross-sectional study nested between Waves 6 and 7 of the Longitudinal Study of Australian Children. The participants were 1455 11- to 12-year-olds (39% of Wave 6; 51% boys). The exposure was 24-hour time use measured across 259 activities using the Multimedia Activity Recall for Children and Adolescents...
June 1, 2017: Pediatrics
https://www.readbyqxmd.com/read/28813994/two-single-cases-treated-by-a-new-pseudoelastic-upper-limb-orthosis-for-secondary-dystonia-of-the-young
#19
Lorenzo Garavaglia, Emanuela Pagliano, Maria Teresa Arnoldi, Antonella LoMauro, Riccardo Zanin, Giovanni Baranello, Andrea Aliverti, Simone Pittaccio
The study proposes a new treatment for dystonia based on a dynamic wearable orthosis equipped with metallic materials of non-linear mechanical characteristics. Two boys with upper-limb dystonia were enrolled, as well as six healthy children. Fully-customised devices were made for the patients. They used the orthosis for one month and their performances were evaluated before and after the treatment. The assessment was done with clinical scales (Modified Ashworth Score, Melbourne Upper Limb Assessment, PedsQL), interviews and optoelectronic kinematic analysis...
July 2017: IEEE ... International Conference on Rehabilitation Robotics: [proceedings]
https://www.readbyqxmd.com/read/28809752/association-of-obesity-and-health-related-quality-of-life-in-iranian-children-and-adolescents-the-weight-disorders-survey-of-the-caspian-iv-study
#20
Silva Hovsepian, Mostafa Qorbani, Mohammad Esmaeil Motlagh, Aryan Madady, Morteza Mansourian, Armita Mahdavi Gorabi, Roya Kelishadi
BACKGROUND: Considering the role of different ethnical, cultural and geographical factors in health related quality of life (HRQOL) as well as the perception of different populations regarding various weight disorders, we aimed to evaluate the association between body mass index (BMI) and HRQOL in Iranian children and adolescents. METHODS: This cross-sectional study was part of the Weight Disorders Survey of the CASPIAN-IV study. During this study, students aged 6-18 years from urban and rural areas of 30 provinces of Iran were selected...
August 28, 2017: Journal of Pediatric Endocrinology & Metabolism: JPEM
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