keyword
MENU ▼
Read by QxMD icon Read
search

Pediatric quality life

keyword
https://www.readbyqxmd.com/read/28823022/long-term-bisphosphonate-therapy-in-osteogenesis-imperfecta
#1
REVIEW
A Biggin, C F Munns
PURPOSE OF REVIEW: Osteogenesis imperfecta (OI) is a genetic bone disorder resulting in bone fragility. It has a heterogeneous phenotype which typically includes reduced bone mass, multiple fractures, deformity, and chronic disability. Bisphosphonate treatment remains the first-line medical management, but there is still debate on aspects of its effectiveness. This review summarizes current knowledge about long-term bisphosphonate use in OI with recommendations on clinical application...
August 19, 2017: Current Osteoporosis Reports
https://www.readbyqxmd.com/read/28817499/nurse-practitioner-lead-pediatric-baclofen-pump-program-impact-on-safety-and-quality-of-care
#2
Kristin Buxton, Ann Morgan, Jayne Rogers
Children with cerebral palsy experience spasticity that can be debilitating and cause significant pain and contractures. Intrathecal baclofen (ITB) therapy can help relieve this spasticity and improve the quality of life for these patients, but it comes with risk. Withdrawal from the medication in case of abrupt discontinuation of delivery can be life-threatening. Regular maintenance of the system is mandatory. Having a program in place to manage the device and support patients helps to ensure their safety...
August 16, 2017: Journal of Neuroscience Nursing: Journal of the American Association of Neuroscience Nurses
https://www.readbyqxmd.com/read/28817182/centralized-patient-reported-outcome-data-collection-in-transplantation-is-feasible-and-clinically-meaningful
#3
Bronwen E Shaw, Ruta Brazauskas, Heather R Millard, Rachel Fonstad, Kathryn E Flynn, Amy Abernethy, Jenny Vogel, Charney Petroske, Deborah Mattila, Rebecca Drexler, Stephanie J Lee, Mary M Horowitz, J Douglas Rizzo
BACKGROUND: Allogeneic hematopoietic cell transplantation (HCT) cures many patients, but often with the risk of late effects and impaired quality of life. The value of quantifying patient-reported outcomes (PROs) is increasingly being recognized, but the routine collection of PROs is uncommon. This study evaluated the feasibility of prospective PRO collection by an outcome registry at multiple time points from unselected HCT patients undergoing transplantation at centers contributing clinical data to the Center for International Blood and Marrow Transplant Research (CIBMTR), and then it correlated the PRO data with clinical and demographic data...
August 17, 2017: Cancer
https://www.readbyqxmd.com/read/28815341/de-novo-weekly-and-biweekly-darbepoetin-alfa-dosing-in-pediatric-patients-with-chronic-kidney-disease
#4
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/28813080/the-relationship-between-motor-function-cognition-independence-and-quality-of-life-in-myelomeningocele-patients
#5
Carolina Lundberg Luz, Maria Clara Drummond Soares de Moura, Karine Kyomi Becker, Rosani Aparecida Antunes Teixeira, Mariana Callil Voos, Renata Hydee Hasue
Motor function, cognition, functional independence and quality of life have been described in myelomeningocele patients, but no study has investigated their relationships. We aimed to investigate the relationships between motor function, cognition, functional independence, quality of life, age, and lesion level in myelomeningocele patients, and investigate the influence of hydrocephalus on these variables. We assessed 47 patients with the Gross Motor Function Measure (motor function), Raven's Colored Progressive Matrices (cognition), Pediatric Evaluation of Disability Inventory (functional independence) and the Autoquestionnaire Qualité de vie Enfant Imagé (quality of life)...
August 2017: Arquivos de Neuro-psiquiatria
https://www.readbyqxmd.com/read/28811041/post-thrombotic-syndrome-in-children
#6
Marisol Betensky, Neil A Goldenberg
The post-thrombotic syndrome (PTS) is the most common long-term complication of pediatric deep venous thrombosis (DVT). It is a burdensome condition that can lead to severe disability and poor quality-of-life of affected children. Although its pathophysiology remains poorly understood, it is thought to be the result of chronic venous hypertension. Recent studies have shown that the inflammatory response associated with an acute DVT likely plays a key role in the development of PTS. The Manco-Johnson Instrument and the modified Villalta Scale are the most widely used instruments for the diagnosis of pediatric PTS...
July 24, 2017: Thrombosis Research
https://www.readbyqxmd.com/read/28809993/adalimumab-in-chronic-plaque-psoriasis-a-clinical-guide
#7
Jashin J Wu, W C Valdecantos
<p>Psoriasis is a common, inflammatory disease that manifests itself as lesions on the skin, which greatly impacts the physical and psychological wellbeing of those affected. The current goal of treatment in psoriasis is to improve the signs and symptoms of disease, whilst minimizing the burden of disease on patient health-related quality of life. Psoriasis can also be associated with other comorbidities such as joint disease, cardiovascular disease, and depression, which can add to the complexity of treatment...
August 1, 2017: Journal of Drugs in Dermatology: JDD
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
#8
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 15, 2017: Journal of Pediatric Endocrinology & Metabolism: JPEM
https://www.readbyqxmd.com/read/28807702/factors-associated-with-use-of-u-s-community-based-palliative-care-for-children-with-life-limiting-or-life-threatening-illnesses-and-their-families-an-integrative-review
#9
REVIEW
Jackelyn Y Boyden, Martha A Q Curley, Janet A Deatrick, Mary Ersek
CONTEXT: As children with life-limiting and life-threatening illnesses live longer, challenges to meeting their complex health care needs arise in homes and communities, as well as in hospitals. Integrated knowledge regarding community-based pediatric palliative care (CBPPC) is needed to strategically plan for a seamless continuum of care for children and their families. OBJECTIVE: The purpose of this integrative review paper is to explore factors that are associated with the use of CBPPC for U...
August 11, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28806187/pain-is-an-underestimated-symptom-in-cystic-fibrosis
#10
Alexandra Masson, Maya Kirszembaum, Isabelle Sermet-Gaudelus
PURPOSE OF REVIEW: Life expectancy is increasing in cystic fibrosis and new aspects of the disease have to be taken into account in cystic fibrosis care. RECENT FINDINGS: Pain is encountered among 70% of adult and pediatric patients with cystic fibrosis. This symptom is underestimated by the multidisciplinary team. It has been reported as impacting quality of life and adherence to treatments. The location of pain is inconstant among the different studies but the major symptoms are headaches, gastrointestinal, and chest pain...
August 12, 2017: Current Opinion in Pulmonary Medicine
https://www.readbyqxmd.com/read/28803432/quality-of-life-in-home-ventilated-children-and-their-families
#11
Rafael González, Amaya Bustinza, Sarah N Fernandez, Miriam García, Silvia Rodriguez, Ma Ángeles García-Teresa, Mirella Gaboli, Silvia García, Olaia Sardón, Diego García, Antonio Salcedo, Antonio Rodríguez, Ma Carmen Luna, Arturo Hernández, Catalina González, Alberto Medina, Estela Pérez, Alicia Callejón, Juan D Toledo, Mercedes Herranz, Jesús López-Herce
HMV (home mechanical ventilation) in children has increased over the last years. The aim of the study was to assess perceived quality of life (QOL) of these children and their families as well as the problems they face in their daily life.We performed a multicentric cross-sectional study using a semi-structured interview about the impact of HMV on families and an evaluation questionnaire about perceived QOL by the patient and their families (pediatric quality of life questionnaire (PedsQL4.0)). We studied 41 subjects (mean age 8...
August 12, 2017: European Journal of Pediatrics
https://www.readbyqxmd.com/read/28803331/impact-of-monitoring-health-related-quality-of%C3%A2-life-in-clinical-practice-in-children-with-type-1-diabetes-mellitus
#12
Marta Murillo, Joan Bel, Jacobo Pérez, Raquel Corripio, Gemma Carreras, Xavier Herrero, Josep-Maria Mengibar, Dolors Rodriguez-Arjona, Ulrike Ravens-Sieberer, Hein Raat, Luis Rajmil
PURPOSE: To test whether the systematic monitoring of health-related quality of life (HRQOL) in clinical practice in Spanish pediatric patients with T1DM helps improve their daily life in a multicenter longitudinal study. METHODS: One hundred thirty-six patients participated, recruited from five centers in Barcelona, Spain (72 girls, mean age 13.4 years). Complete data were collected for 119 patients (85%). Pediatricians were randomly assigned to the HRQOL intervention (n = 70), or control group (n = 49)...
August 12, 2017: Quality of Life Research
https://www.readbyqxmd.com/read/28803186/asthma-exacerbations-and-triggers-in-children-in-tenor-impact-on-quality-of-life
#13
Bradley E Chipps, Tmirah Haselkorn, Karin Rosén, David R Mink, Benjamin L Trzaskoma, Allan T Luskin
BACKGROUND: Data examining associations between asthma exacerbations, triggers, and asthma-related quality of life (QOL) in children with severe/difficult-to-treat asthma are unavailable. OBJECTIVE: To evaluate real-world data on relationships between asthma exacerbations, triggers, and QOL in children using data from TENOR (The Epidemiology and Natural History of Asthma Outcomes and Treatment Regimens), a 3-year observational study of patients with severe/difficult-to-treat asthma, including those aged 6 to 12 years...
August 9, 2017: Journal of Allergy and Clinical Immunology in Practice
https://www.readbyqxmd.com/read/28800266/impact-of-shared-decision-making-on-asthma-quality-of-life-and-asthma-control-among-children
#14
Yhenneko J Taylor, Hazel Tapp, Lindsay E Shade, Tsai-Ling Liu, Jessica Lauren Mowrer, Michael F Dulin
OBJECTIVE: Few studies have examined the effectiveness of shared decision making (SDM) in clinical practice. This study evaluated the impact of SDM on quality of life and symptom control in children with asthma. METHODS: We conducted a prospective 3-year study in six community-based practices serving a low-income patient population. Practices received training on SDM using an evidence-based toolkit. Patients aged 2 to 17 with a diagnosis of asthma were identified from scheduling and billing data...
August 11, 2017: Journal of Asthma: Official Journal of the Association for the Care of Asthma
https://www.readbyqxmd.com/read/28797854/why-computerized-adaptive-testing-in-pediatric-brain-tumor-clinics
#15
Jin-Shei Lai, Jennifer L Beaumont, Cindy J Nowinski, David Cella, William F Hartsell, John Han-Chih Chang, Peter E Manley, Stewart Goldman
CONTEXT: Monitoring of health-related quality of life (HRQOL) and symptoms of patients with brain tumors is needed yet not always feasible. This is partially due to lack of brief-yet-precise assessments with minimal administration burden that are easily incorporated into clinics. Dynamic computerized adaptive testing (CAT) or static fixed-length short-forms, derived from psychometrically-sound item banks, are designed to fill this void. OBJECTIVE: This study evaluated the comparability of scores obtained from CATs and short-forms...
August 7, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28797007/cerebrospinal-fluid-biomarkers-of-pediatric-hydrocephalus
#16
David D Limbrick, Leandro Castaneyra-Ruiz, Roland H Han, Daniel Berger, James P McAllister, Diego M Morales
Hydrocephalus (HC) is a common, debilitating neurological condition that requires urgent clinical decision-making. At present, neurosurgeons rely heavily on a patient's history, physical examination findings, neuroimaging, and clinical judgment to make the diagnosis of HC or treatment failure (e.g., shunt malfunction). Unfortunately, these tools, even in combination, do not eliminate subjectivity in clinical decisions. In order to improve the management of infants and children with HC, there is an urgent need for new biomarkers to complement currently available tools and enable clinicians to confidently establish the diagnosis of HC, assess therapeutic efficacy/treatment failure, and evaluate current and future developmental challenges, so that every child has access to the resources they need to optimize their outcome and quality of life...
August 11, 2017: Pediatric Neurosurgery
https://www.readbyqxmd.com/read/28794060/assessment-of-health-related-quality-of-life-and-psychological-well-being-of-children-and-adolescents-with-obesity-enrolled-in-a-new-zealand-community-based-intervention-programme-an-observational-study
#17
Yvonne C Anderson, Lisa E Wynter, Katharine F Treves, Cameron C Grant, Joanna M Stewart, Tami L Cave, Trecia A Wouldes, José G B Derraik, Wayne S Cutfield, Paul L Hofman
OBJECTIVE: To describe health-related quality of life (HRQOL) and psychological well-being of children and adolescents at enrolment in a multidisciplinary community-based obesity programme and to determine association with ethnicity. This programme targeted indigenous people and those from most deprived households. Further, this cohort was compared with other populations/normative data. METHODS: This study examines baseline demographic data of an unblinded randomised controlled clinical trial...
August 9, 2017: BMJ Open
https://www.readbyqxmd.com/read/28791278/venous-thromboembolism-in-pediatric-vascular-anomalies
#18
REVIEW
Taizo A Nakano, Chadi Zeinati
The presence of a vascular anomaly suggests that capillaries, veins, arteries, and/or lymphatic vessels have demonstrated abnormal development and growth. Often dilated and misshaped, these vessels augment normal flow of blood and lymphatic fluids that increases the overall risk to develop intralesional thrombosis. Abnormal endothelial and lymphoendothelial cells activate hemostasis and hyperfibrinolytic pathways through poorly understood mechanisms, which contribute to the development of localized intravascular coagulopathy...
2017: Frontiers in Pediatrics
https://www.readbyqxmd.com/read/28777689/the-role-of-pediatric-palliative-care-in-complex-congenital-heart-disease-three-illustrative-cases
#19
Rachna May, Jess Thompson
BACKGROUND: Although the role of pediatric palliative care (PPC) is well described in oncology, neonatal, and pediatric intensive care patients, the involvement of PPC in patients with congenital heart disease (CHD) is not well explored. CHD is a leading cause of neonatal morbidity and can cause ongoing morbidity throughout the course of a child's life. PPC, with its focus on quality of life and longitudinal care through the course of an illness, could be of benefit to this population...
August 4, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28776749/psychosocial-functioning-self-image-and-quality-of-life-in-children-and-adolescents-with-neurofibromatosis-type-1
#20
S Cipolletta, G Spina, A Spoto
BACKGROUND: Neurofibromatosis type 1 (NF1) is a genetic disorder associated with neurocutaneus manifestations, as well as attention and learning problems. The aim of this study was to examine the psychosocial functioning, quality of life, and self-image of children with NF1. METHOD: Two hundred forty participants were recruited, comprising 60 children and adolescents with NF1, 60 parents of children with NF1, 60 children and adolescents without NF1, and 60 parents of children without NF1...
August 3, 2017: Child: Care, Health and Development
keyword
keyword
103993
1
2
Fetch more papers »
Fetching more papers... Fetching...
Read by QxMD. Sign in or create an account to discover new knowledge that matter to you.
Remove bar
Read by QxMD icon Read
×

Search Tips

Use Boolean operators: AND/OR

diabetic AND foot
diabetes OR diabetic

Exclude a word using the 'minus' sign

Virchow -triad

Use Parentheses

water AND (cup OR glass)

Add an asterisk (*) at end of a word to include word stems

Neuro* will search for Neurology, Neuroscientist, Neurological, and so on

Use quotes to search for an exact phrase

"primary prevention of cancer"
(heart or cardiac or cardio*) AND arrest -"American Heart Association"