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https://www.readbyqxmd.com/read/29331407/decreased-health-related-quality-of-life-in-children-and-adolescents-with-autoimmune-hepatitis
#1
Ana Beatriz Bozzini, Luciana Neder, Clovis A Silva, Gilda Porta
OBJECTIVE: The objective of this study was to evaluate the health-related quality of life in children and adolescents with autoimmune hepatitis. METHODS: A cross-sectional assessment with the Pediatric Quality of Life Inventory 4.0 (PedsQL 4.0) was completed for 80 patients with autoimmune hepatitis and 45 healthy controls. Demographic data, prednisone dose, disease remission state, disease severity, and abdominal pain were also evaluated. RESULTS: Based on the child self-reports, physical, emotional, school, and total scores were significantly lower in autoimmune hepatitis patients when compared with controls (p<0...
January 10, 2018: Jornal de Pediatria
https://www.readbyqxmd.com/read/29325143/associations-of-gross-motor-delay-behavior-and-quality-of-life-in-young-children-with-autism
#2
James B Hedgecock, Lisa A Dannemiller, Amy Shui, Mary Jane Rapport, Terry Katz
Background: Young children with autism spectrum disorder (ASD) often have gross motor delays (GMD) that may accentuate problem daytime behavior (PDB) and health-related quality of life (QoL). Objective: The objective of this study was to describe the degree of GMD in young children with ASD and associations of GMD with PDB and QoL. The primary hypothesis was that GMD significantly modifies the associations between internalizing or externalizing PDB and QoL. Design: This study used a cross-sectional, retrospective analysis...
January 9, 2018: Physical Therapy
https://www.readbyqxmd.com/read/29316996/a-randomised-trial-of-early-palliative-care-for-maternal-stress-in-infants-prenatally-diagnosed-with-single-ventricle-heart-disease
#3
Hayley S Hancock, Ken Pituch, Karen Uzark, Priya Bhat, Carly Fifer, Maria Silveira, Sunkyung Yu, Suzanne Welch, Janet Donohue, Ray Lowery, Ranjit Aiyagari
Children with single-ventricle disease experience high mortality and complex care. In other life-limiting childhood illnesses, paediatric palliative care may mitigate maternal stress. We hypothesised that early palliative care in the single-ventricle population may have the same benefit for mothers. In this pilot randomised trial of early palliative care, mothers of infants with prenatal single-ventricle diagnoses completed surveys measuring depression, anxiety, coping, and quality of life at a prenatal visit and neonatal discharge...
January 10, 2018: Cardiology in the Young
https://www.readbyqxmd.com/read/29313440/validations-of-the-om-6-parent-proxy-survey-for-infants-toddlers-with-otitis-media
#4
Joy Tao, Kristine Schulz, Donna B Jeffe, Judith E C Lieu
Objective To validate the Otitis Media-6 (OM-6), a parent-proxy quality-of-life (QOL) questionnaire for infants/young children with OM, against other previously validated generic QOL questionnaires. Study Design Multi-institutional cross-sectional study. Setting Twenty-three otolaryngology, pediatric, and family practices across the United States. Subjects and Methods Caregivers of 6- to 24-month-old children with a history of OM completed the OM-6, OM History Form, and Pediatric Quality of Life (PedsQL) Infant Scales survey...
January 1, 2018: Otolaryngology—Head and Neck Surgery
https://www.readbyqxmd.com/read/29277313/quality-of-life-and-mood-in-children-with-cystic-fibrosis-associations-with-sleep-quality
#5
Moya Vandeleur, Lisa M Walter, David S Armstrong, Philip Robinson, Gillian M Nixon, Rosemary S C Horne
BACKGROUND: We aimed to investigate the relationship between sleep quality, mood and health-related quality of life (HRQOL) in children with CF and controls. METHODS: Children (7-12years) and adolescents (13-18years) with CF and controls completed sleep evaluation: overnight oximetry and 14days of actigraphy. Age-appropriate questionnaires assessed mood (Children's Depression Inventory; CDI or Beck's Depression Inventory), HRQOL (CF Questionnaire-Revised; CFQ-R or PedsQL), and sleepiness (Pediatric Daytime Sleepiness Scale)...
December 22, 2017: Journal of Cystic Fibrosis: Official Journal of the European Cystic Fibrosis Society
https://www.readbyqxmd.com/read/29273891/pedsql-neurofibromatosis-type-1-module-for-children-adolescents-and-young-adults-feasibility-reliability-and-validity
#6
Kavitha Nutakki, James W Varni, Nancy L Swigonski
The objective of the present study was to report on the measurement properties of the Pediatric Quality of Life Inventory (PedsQL) Neurofibromatosis Type 1 Module for pediatric patients ages 5-25 from the perspectives of patients and parents. The 104-item PedsQL NF1 Module and 23-item PedsQL Generic Core Scales were completed in a multi-site national study by 323 patients and 335 parents (343 families). Patients were diagnosed with NF1 using the National Institutes of Health diagnostic criteria. In addition to a Total Scale Score, 18 unidimensional scales were derived measuring skin itch bother, skin sensations, pain, pain impact, pain management, cognitive functioning, speech, fine motor, balance, vision, perceived physical appearance, communication, worry, treatment anxiety, medicines, stomach discomfort, constipation, and diarrhea...
December 22, 2017: Journal of Neuro-oncology
https://www.readbyqxmd.com/read/29222303/responsiveness-of-patient-reported-outcome-measurement-information-system-promis-pain-domains-and-disease-specific-patient-reported-outcome-measures-in-children-and-adults-with-sickle-cell-disease
#7
REVIEW
Susanna Curtis, Amanda M Brandow
Case 1: A 33-year-old man with hemoglobin SS (homozygous hemoglobin S) disease presents for his regular clinic visit. He had 6 hospital admissions for pain over the past year. He also has avascular necrosis of the right hip. He takes daily hydroxyurea with hematologic changes indicative of compliance. He also takes morphine sustained release twice daily and morphine immediate release every 6 hours as needed for pain. He feels that more optimal pain control at home would help him reduce his number of hospital admissions in the upcoming year and improve his daily functioning at home...
December 8, 2017: Hematology—the Education Program of the American Society of Hematology
https://www.readbyqxmd.com/read/29210313/pain-predicts-poorer-health-related-quality-of-life-in-childhood-onset-systemic-lupus-erythematosus-a-cohort-study
#8
Ji Li, Jordan T Jones, Catherine Donnelly, Natoshia Cunningham, Susmita Kashikar-Zuck, Hermine I Brunner
Objectives To investigate the predictive value of pain on health-related quality of life (HRQoL) among patients with childhood-onset systemic lupus erythematous (cSLE), as increased adverse psychosocial events are reported in patients with cSLE, but the predictive impact of psychological events on HRQoL remains unclear. Methods This cohort study recruited patients with cSLE from the Cincinnati Children's Hospital Medical Centre rheumatology clinic. Data regarding pain due to lupus in past week, and HRQoL, were collected during a baseline and 6-month follow-up visit...
January 1, 2017: Journal of International Medical Research
https://www.readbyqxmd.com/read/29198542/kawasaki-disease-substantially-impacts-health-related-quality-of-life
#9
Soultana Kourtidou, April E Slee, Margaret E Bruce, Haaland Wren, Rita M Mangione-Smith, Michael A Portman
OBJECTIVE: To prospectively evaluate the acute impact of Kawasaki disease (KD) on health-related quality of life (HRQoL) and to assess deterioration in the HRQoL experienced by children with KD compared with other childhood diseases. STUDY DESIGN: We merged the Outcomes Assessment Program database obtained prospectively with the existing KD database and queried for KD admissions between 1 month and 13 years of age. HRQoL was evaluated with the parent-proxy Pediatric Quality of Life Inventory (PedsQL) 4...
November 30, 2017: Journal of Pediatrics
https://www.readbyqxmd.com/read/29193603/quality-of-life-in-adolescents-with-hepatitis-c-treated-with-sofosbuvir-and-ribavirin
#10
Zobair M Younossi, Maria Stepanova, Kathleen B Schwarz, Stefan Wirth, Philip Rosenthal, Regino Gonzalez-Peralta, Karen Murray, Linda Henry, Sharon Hunt
Chronic HCV infection has been associated with impairment of health-related quality of life (HRQL) in both adults and pediatric patients. Our aim was to assess the HRQL of HCV-positive children treated with SOF+RBV. The data for this post-hoc analysis was collected in a phase 2 open-label multinational study that evaluated safety and efficacy of sofosbuvir (400mg/day) plus ribavirin (weight-based up to 1400mg/day) for 12 or 24 weeks in adolescents with chronic HCV (GS-US-334-1112). Patients and their parents/guardians completed the PedsQL-4...
November 28, 2017: Journal of Viral Hepatitis
https://www.readbyqxmd.com/read/29184580/the-impact-of-an-interactive-computer-game-on-the-quality-of-life-of-children-undergoing-chemotherapy
#11
Zahra Fazelniya, Mostafa Najafi, Alireza Moafi, Sedigheh Talakoub
Background: Quality of life (QOL) of children with cancer reduces right from the diagnosis of disease and the start of treatment. Computer games in medicine are utilized to interact with patients and to improve their health-related behaviors. This study aimed to investigate the effect of an interactive computer game on the QOL of children undergoing chemotherapy. Materials and Methods: In this clinical trial, 64 children with cancer aged between 8 and12 years were selected through convenience sampling and randomly assigned to experimental or control group...
November 2017: Iranian Journal of Nursing and Midwifery Research
https://www.readbyqxmd.com/read/29183328/initial-psychometric-validation-of-the-questionnaire-on-pain-caused-by-spasticity-qps
#12
Thorin L Geister, Donald M Bushnell, Jie Yang, Yuqiong Zhang, Mona L Martin, Alev Heilbronn, Zhenhuan Liu
BACKGROUND: The Questionnaire on Pain caused by Spasticity (QPS) is a modular patient- and observer-reported outcome measure of spasticity-related pain (SRP) in children with cerebral palsy (CP). Originally developed for an English-speaking population, we conducted a psychometric validation of a recently developed Chinese language version of the QPS. METHODS: This was a prospective, observational study involving 137 children/adolescents with CP and upper and/or lower limb spasticity and their parents at three sites in China...
November 28, 2017: Health and Quality of Life Outcomes
https://www.readbyqxmd.com/read/29155956/associations-between-parental-ses-and-children-s-health-related-quality-of-life-the-role-of-objective-and-subjective-social-status
#13
Kay W Kim, Jan L Wallander, Melissa Peskin, Paula Cuccaro, Marc N Elliott, Mark A Schuster
Objective: We examined (1) the relationship that parental objective social status (OSS) and subjective social status (SSS) have with children's health-related quality of life (HRQOL), (2) whether SSS mediates the association between OSS and HRQOL, and (3) whether these associations differ among Black, Latino, and White children. Method: Data came from 4,824 Black, Latino, and White 5th graders in the Healthy PassagesTM study. OSS was measured as parent educational attainment and net equivalent household income...
November 15, 2017: Journal of Pediatric Psychology
https://www.readbyqxmd.com/read/29151251/quality-of-life-following-hospitalization-associated-acute-kidney-injury-in-children
#14
Kelsey L Richardson, R Scott Watson, Sangeeta Hingorani
OBJECTIVES: Acute kidney injury (AKI) is common in hospitalized children. The impact of AKI following hospitalization is not fully understood, particularly the impact on health related quality of life (HRQOL). The goal of this study was to determine the relationship between hospitalization-associated AKI and HRQOL in a pediatric population. STUDY DESIGN: We conducted a retrospective cohort study of children with hospitalization-associated AKI. Eligible children were 1-19 years old with AKI defined by kidney disease improving global outcomes (KDIGO) criteria and had at least one completed pediatric quality of life (PedsQL) 4...
November 18, 2017: Journal of Nephrology
https://www.readbyqxmd.com/read/29145889/quality-of-life-in-children-with-infantile-hemangioma-a-case-control-study
#15
Chuan Wang, Yanan Li, Bo Xiang, Fei Xiong, Kai Li, Kaiying Yang, Siyuan Chen, Yi Ji
BACKGROUND: Infantile hemangioma (IH) is the most common vascular tumor in children. It is controversial whether IHs has effects on the quality of life (QOL) in patients of whom IH poses no threat or potential for complication. Thus, we conducted this study to evaluate the q QOL in patients with IH and find the predictors of poor QOL. METHODS: The PedsQL 4.0 Genetic Core Scales and the PedsQL family information form were administered to parents of children with IH and healthy children both younger than 2-year-old...
November 16, 2017: Health and Quality of Life Outcomes
https://www.readbyqxmd.com/read/29144963/translation-and-validation-of-pediatric-quality-of-life-inventory%C3%A2-3-0-diabetes-module-pedsql%C3%A2-3-0-diabetes-module-in-brazil-portuguese-language
#16
Leila F Dos S Garcia, Thais Della Manna, Caroline de Gouveia Buff Passone, Lygia Spassapan de Oliveira
OBJECTIVE: The aim of the present study was to create a translated version of the Pediatric Quality of Life Inventory™ 3.0 Diabetes Module (PedsQL™ 3.0 Diabetes Module) in Brazilian Portuguese that was conceptually equivalent to the original American English version and to linguistically validate it in a Brazilian pediatric population with type 1 diabetes mellitus and their parents or caregivers. METHODS: The instrument was translated, back-translated, and then administered to 83 children/adolescents (5-18 years) with type 1 diabetes mellitus and their family members and to 25 parents/caregivers of patients aged between 2 and 4 years...
November 13, 2017: Jornal de Pediatria
https://www.readbyqxmd.com/read/29131705/early-education-and-employment-outcomes-after-cancer-in-adolescents-and-young-adults
#17
Silja Kosola, Maria C McCarthy, Robyn McNeil, Lisa M Orme, Sarah Drew, Susan M Sawyer
PURPOSE: This study describes the early educational and vocational outcomes of Australian adolescents and young adults (AYAs) after cancer diagnosis and examines factors associated with these outcomes. METHODS: Within this cross-sectional national Australian study, 196 AYAs aged 15-25 years at cancer diagnosis and within 6-24 months of diagnosis were recruited from 18 sites. Participants completed a survey that included questions about school and work outcomes, support received regarding necessary changes to education and vocation, and validated measures of anxiety, depression, and post-traumatic stress...
November 13, 2017: Journal of Adolescent and Young Adult Oncology
https://www.readbyqxmd.com/read/29130034/the-effects-of-disease-related-symptoms-on-daily-function-in-wolfram-syndrome
#18
Tasha Doty, Erin R Foster, Bess Marshall, Samantha Ranck, Tamara Hershey
OBJECTIVE: To investigate daily function among individuals with Wolfram Syndrome (WFS) and examine whether any limitations are related to disease-related symptoms. METHODS: WFS (n = 31), Type 1 diabetic (T1DM; n = 25), and healthy control (HC; n = 29) participants completed the Pediatric Quality of Life Questionnaire (PEDSQL) Self and Parent Report. PEDSQL domain scores were compared among these groups and between WFS patients with and without specific disease-related symptoms...
2017: Translational Science of Rare Diseases
https://www.readbyqxmd.com/read/29129379/children-with-epilepsy-against-their-healthy-peers-and-those-with-headaches-differences-similarities
#19
Dorota Talarska, Michał Michalak, Patrycja Talarska, Barbara Steinborn
INTRODUCTION: Epilepsy, like most chronic diseases, affects bio-psycho-social functioning of children and adolescents. The aim of this work was to assess functioning of children with epilepsy compared with the group of healthy children and those with headaches carried out by children themselves and their mothers. MATERIAL AND METHODS: The study included 209 children with epilepsy and 173 children with headaches and 182 healthy students and their mothers. The research tool was Pediatric Quality of Life Inventory 4...
October 27, 2017: Neurologia i Neurochirurgia Polska
https://www.readbyqxmd.com/read/29117847/the-impact-of-school-visits-on-siblings-of-children-with-cancer
#20
Isabelle Sjoberg, Jason D Pole, Marilyn Cassidy, Claudette Boilard, Sharon Costantini, Donna L Johnston
BACKGROUND: Childhood cancer affects the entire family. Siblings experience similar stress to that of the ill child, including anger, depression, jealousy, guilt, and social isolation. School reentry programs are shown to be positive interventions for patients, it is hypothesized that similar outcomes exist for siblings. OBJECTIVE: To examine the feasibility of studying the impact of the Ontario Oncology Nurse School Visitation Program on the well-being and school adjustment of siblings of pediatric cancer patients...
November 1, 2017: Journal of Pediatric Oncology Nursing: Official Journal of the Association of Pediatric Oncology Nurses
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