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Cerebral palsy quality of life

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https://www.readbyqxmd.com/read/29768338/botulinum-toxin-injection-to-improve-functional-independence-and-to-alleviate-parenting-stress-in-a-child-with-advanced-pantothenate-kinase-associated-neurodegeneration-a-case-report-and-literature-review
#1
Cho-I Lin, Kuan-Lin Chen, Ta-Shen Kuan, Sheng-Han Lin, Wei-Pin Lin, Yu-Ching Lin
RATIONALE: Pantothenate kinase-associated neurodegeneration (PKAN) is a rare autosomal recessive disease. Progressive motor symptoms such as dystonia and spasticity begin in childhood and relentlessly become incapacitating later in life. Treatments including anticholinergics and iron chelation are usually ineffective. Botulinum toxin type A (BoNT-A) is effective for adult patients with dystonia or spasticity. PATIENT CONCERNS: We reported a 10-year-old female patient with advanced PKAN, manifesting as generalized dystonia and spasticity...
May 2018: Medicine (Baltimore)
https://www.readbyqxmd.com/read/29764869/tele-upcat-study-protocol-of-a-randomised-controlled-trial-of-a-home-based-tele-monitored-upper-limb-children-action-observation-training-for-participants-with-unilateral-cerebral-palsy
#2
Giuseppina Sgandurra, Francesca Cecchi, Elena Beani, Irene Mannari, Martina Maselli, Francesco Paolo Falotico, Emanuela Inguaggiato, Silvia Perazza, Elisa Sicola, Hilde Feys, Katrijn Klingels, Adriano Ferrari, Paolo Dario, Roslyn N Boyd, Giovanni Cioni
INTRODUCTION: A new rehabilitative approach, called UPper Limb Children Action Observation Training (UPCAT), based on the principles of action observation training (AOT), has provided promising results for upper limb rehabilitation in children with unilateral cerebral palsy (UCP). This study will investigate if a new information and communication technology platform, named Tele-UPCAT, is able to deliver AOT in a home setting and will test its efficacy on children and young people with UCP...
May 14, 2018: BMJ Open
https://www.readbyqxmd.com/read/29763510/trihexyphenidyl-for-dystonia-in-cerebral-palsy
#3
REVIEW
Adrienne R Harvey, Louise B Baker, Dinah Susan Reddihough, Adam Scheinberg, Katrina Williams
BACKGROUND: Cerebral palsy occurs in up to 2.1 of every 1000 live births and encompasses a range of motor problems and movement disorders. One commonly occurring movement disorder amongst those with cerebral palsy is dystonia: sustained or intermittent involuntary muscle spasms and contractions that cause twisting, repetitive movements and abnormal postures. The involuntary contractions are often very painful and distressing and cause significant limitations to activity and participation...
May 15, 2018: Cochrane Database of Systematic Reviews
https://www.readbyqxmd.com/read/29736993/children-with-cerebral-palsy-in-ghana-malnutrition-feeding-challenges-and-caregiver-quality-of-life
#4
Sarah Polack, Mel Adams, David O'banion, Marjolein Baltussen, Sandra Asante, Marko Kerac, Melissa Gladstone, Maria Zuurmond
AIM: To assess feeding difficulties and nutritional status among children with cerebral palsy (CP) in Ghana, and whether severity of feeding difficulties and malnutrition are independently associated with caregiver quality of life (QoL). METHOD: This cross-sectional survey included 76 children with CP (18mo-12y) from four regions of Ghana. Severity of CP was classified using the Gross Motor Function Classification System and anthropometric measures were taken. Caregivers rated their QoL (using the Pediatric Quality of Life Inventory Family Impact Module) and difficulties with eight aspects of child feeding...
May 7, 2018: Developmental Medicine and Child Neurology
https://www.readbyqxmd.com/read/29732901/assistive-technology-for-promoting-adaptive-skills-of-children-with-cerebral-palsy-ten-cases-evaluation
#5
Fabrizio Stasolla, Alessandro O Caffò, Viviana Perilli, Adele Boccasini, Rita Damiani, Fiora D'Amico
OBJECTIVES: To extend the use of assistive technology for promoting adaptive skills of children with cerebral palsy. To assess its effects on positive participation of ten participants involved. To carry out a social validation recruiting parents, physiotherapists and support teachers as external raters. METHOD: A multiple probe design was implemented for Studies I and II. Study I involved five participants exposed to a combined program aimed at enhancing choice process of preferred items and locomotion fluency...
May 6, 2018: Disability and Rehabilitation. Assistive Technology
https://www.readbyqxmd.com/read/29690795/child-s-quality-of-life-and-mother-s-burden-in-spastic-cerebral-palsy-a-topographical-classification-perspective
#6
Yasemin Ozkan
Objective To evaluate the child's quality of life (QoL), mother's burden, and correlation between these parameters in children with spastic cerebral palsy (CP). Methods Children with spastic CP (n = 120; mean age: 8.64 ± 3.45 years; range: 2-17 years) were classified into three groups of diplegia, hemiplegia, and quadriplegia based on topographical classification. The Pediatric Quality of Life Inventory and Zarit Burden Interview were used to determine the child's QoL and the mother's burden scores, respectively...
January 1, 2018: Journal of International Medical Research
https://www.readbyqxmd.com/read/29673348/path-analysis-of-strength-spasticity-gross-motor-function-and-health-related-quality-of-life-in-children-with-spastic-cerebral-palsy
#7
Eun-Young Park
BACKGROUND: Measures of health-related quality of life may predict the future status of individuals with illnesses, and could therefore be a good indicator in children with cerebral palsy (CP). This study examines the causal relationship between spasticity, weakness, gross motor function, and health-related quality of life (QOL) in school-aged children with spastic CP and tests models of functional outcome mediated by gross motor function. METHODS: A total of 62 children (44 males, 18 females) with spastic CP were recruited...
April 19, 2018: Health and Quality of Life Outcomes
https://www.readbyqxmd.com/read/29671771/analgesic-effects-of-botulinum-toxin-in-children-with-cp
#8
REVIEW
Josephine Sandahl Michelsen, Gitte Normann, Christian Wong
Experiencing pain is the greatest contributor to a reduced quality of life in children with cerebral palsy (CP). The presence of pain is quite common (~60%) and increases with age. This leads to missed school days, less participation, and reduced ambulation. Despite these alarming consequences, strategies to relieve the pain are absent and poorly studied. Moreover, it is difficult to evaluate pain in this group of children, especially in cases of children with cognitive deficits, and tools for pain evaluation are often inadequate...
April 19, 2018: Toxins
https://www.readbyqxmd.com/read/29648488/the-long-term-effects-of-conductive-education-courses-in-young-children-with-cerebral-palsy-a-randomized-controlled-trial
#9
Hilde Tinderholt Myrhaug, Jan Odgaard-Jensen, Reidun Jahnsen
PURPOSE: To assess the additional long-term effects of multiple conductive education (CE) courses followed by conventional practice on functional skills and quality of life in children with cerebral palsy (CP) compared to a 4-month CE-course delay including conventional practice. METHODS: Twenty-one children with CP, 3-6 years and varied functional levels, were randomized to 3-week CE course(s) followed by conventional practice or 4 months on a waiting list, including conventional practice and followed by CE-courses...
April 12, 2018: Developmental Neurorehabilitation
https://www.readbyqxmd.com/read/29629589/flexed-knee-gait-in-children-with-cerebral-palsy
#10
C Church, J Ge, S Hager, T Haumont, N Lennon, T Niiler, R Hulbert, F Miller
Aims The purpose of this study was to evaluate the long-term outcome of adolescents with cerebral palsy who have undergone single-event multilevel surgery for a flexed-knee gait, followed into young adulthood using 3D motion analysis. Patients and Methods A total of 59 young adults with spastic cerebral palsy, with a mean age of 26 years (sd 3), were enrolled into the study in which their gait was compared with an evaluation that had taken place a mean of 12 years (sd 2) previously. At their visits during adolescence, the children walked with excessive flexion of the knee at initial contact and surgical or therapeutic interventions were not controlled between visits...
April 1, 2018: Bone & Joint Journal
https://www.readbyqxmd.com/read/29613924/assessing-the-risk-benefit-ratio-of-scoliosis-surgery-in-cerebral-palsy-surgery-is-worth-it
#11
Firoz Miyanji, Luigi A Nasto, Paul D Sponseller, Suken A Shah, Amer F Samdani, Baron Lonner, Burt Yaszay, David H Clements, Unni Narayanan, Peter O Newton
BACKGROUND: The true benefits of scoliosis surgery in cerebral palsy (CP) remain uncertain. Our aims were to determine the benefits of spinal fusion according to health-related quality of life (HRQoL) improvement at long-term follow-up and to explore the effect of surgery-related complications on clinical outcomes. METHODS: The cases of consecutive patients who had Gross Motor Function Classification System (GMFCS) level-IV or V cerebral palsy with 5-year follow-up from a prospective, longitudinal, multicenter database were analyzed...
April 4, 2018: Journal of Bone and Joint Surgery. American Volume
https://www.readbyqxmd.com/read/29589480/threshold-values-of-ankle-dorsiflexion-and-gross-motor-function-in-60-children-with-cerebral-palsy
#12
Helle M Rasmussen, Joachim Svensson, Maria Thorning, Niels W Pedersen, Søren Overgaard, Anders Holsgaard-Larsen
Background and purpose - Threshold values defining 3 categories of passive range of motion are used in the Cerebral Palsy follow-Up Program to guide clinical decisions. The aim of this study was to investigate the threshold values by testing the hypothesis that passive range of motion in ankle dorsiflexion is associated with gross motor function and that function differs between the groups of participants in each category. Patients and methods - We analyzed data from 60 ambulatory children (aged 5-9 years) with spastic cerebral palsy...
March 28, 2018: Acta Orthopaedica
https://www.readbyqxmd.com/read/29569017/a-review-of-preference-based-measures-for-the-assessment-of-quality-of-life-in-children-and-adolescents-with-cerebral-palsy
#13
REVIEW
Christine Mpundu-Kaambwa, Gang Chen, Elisabeth Huynh, Remo Russo, Julie Ratcliffe
PURPOSE: To examine the psychometric properties and suitability for use within the context of cerebral palsy research in children and adolescents of generic preference-based outcome measures (PROMs). METHODS: Nine electronic databases were searched in this systematic review. The consensus-based standards for the selection of health measurement instruments (COSMIN) checklist were used to measure the psychometric properties of the PROMs. A meta-analysis was used to pool correlation coefficients for convergent validity using the Schmidt-Hunter method...
March 22, 2018: Quality of Life Research
https://www.readbyqxmd.com/read/29564711/documenting-an-epidemic-of-suffering-low-health-related-quality-of-life-among-transgender-youth
#14
Yuanshu Zou, Rhonda Szczesniak, Alexis Teeters, Lee Ann E Conard, Daniel H Grossoehme
PURPOSE: To quantify HRQOL of TGN patients using the PedsQL 4.0 generic core scales, and to compare reported HRQOL of TGN adolescents with published data from comparison populations. METHODS: Transgender children and adolescents (N = 142; 68% natal females) ages 6-23 years (M = 15.9, SD = 3.7) attending an outpatient clinic for TGN care at an academic pediatric hospital and caregivers of children and adolescents (N = 95) completed the PedsQL 4.0 generic core scales...
March 21, 2018: Quality of Life Research
https://www.readbyqxmd.com/read/29552921/a-randomized-controlled-trial-to-compare-two-methods-of-constraint-induced-movement-therapy-to-improve-functional-ability-in-the-affected-upper-limb-in-pre-school-children-with-hemiplegic-cerebral-palsy-catch-trial
#15
Pauline M Christmas, Catherine Sackley, Max G Feltham, Carole Cummins
OBJECTIVE: To determine the feasibility and short-term efficacy of caregiver-directed constraint-induced movement therapy to improve upper limb function in young children with hemiplegic cerebral palsy. DESIGN: Randomized controlled trial with masked assessment. SETTING: Community paediatric therapy services. SUBJECTS: Pre-school children with hemiplegic cerebral palsy. INTERVENTIONS: Caregiver-directed constraint-induced movement therapy administered using either 24-hour short-arm restraint device (prolonged) or intermittent holding restraint during therapy (manual)...
March 1, 2018: Clinical Rehabilitation
https://www.readbyqxmd.com/read/29542813/a-common-data-language-for-clinical-research-studies-the-national-institute-of-neurological-disorders-and-stroke-and-american-academy-for-cerebral-palsy-and-developmental-medicine-cerebral-palsy-common-data-elements-version-1-0-recommendations
#16
REVIEW
Verónica Schiariti, Eileen Fowler, Joline E Brandenburg, Eric Levey, Sarah Mcintyre, Theresa Sukal-Moulton, Sharon L Ramey, Jessica Rose, Susan Sienko, Elaine Stashinko, Laura Vogtle, Robin S Feldman, James I Koenig
To increase the efficiency and effectiveness of clinical research studies, cerebral palsy (CP) specific Common Data Elements (CDEs) were developed through a partnership between the National Institute of Neurological Disorders and Stroke (NINDS) and the American Academy of Cerebral Palsy and Developmental Medicine (AACPDM). International experts reviewed existing NINDS CDEs and tools used in studies of children and young people with CP. CDEs were compiled, subjected to internal review, and posted online for external public comment in September 2016...
March 15, 2018: Developmental Medicine and Child Neurology
https://www.readbyqxmd.com/read/29538382/a-systematic-review-of-randomised-controlled-trials-assessing-effectiveness-of-prosthetic-and-orthotic-interventions
#17
Aoife Healy, Sybil Farmer, Anand Pandyan, Nachiappan Chockalingam
BACKGROUND: Assistive products are items which allow older people and people with disabilities to be able to live a healthy, productive and dignified life. It has been estimated that approximately 1.5% of the world's population need a prosthesis or orthosis. OBJECTIVE: The objective of this study was to systematically identify and review the evidence from randomized controlled trials assessing effectiveness and cost-effectiveness of prosthetic and orthotic interventions...
2018: PloS One
https://www.readbyqxmd.com/read/29521937/intraoperative-traction-may-be-a-viable-alternative-to-anterior-surgery-in-cerebral-palsy-scoliosis-%C3%A2-100-degrees
#18
Taylor J Jackson, Burt Yaszay, Joshua M Pahys, Anuj Singla, Firoz Miyanji, Suken A Shah, Paul D Sponseller, Peter O Newton, John M Flynn, Patrick J Cahill
BACKGROUND: For large scoliosis, 2 strategies to maximize correction include intraoperative traction and/or anterior release. It is unclear which patients will benefit the most form either approach. The purpose of our study is to compare the radiographic, perioperative clinical outcomes, and health-related quality of life (HRQoL) outcomes of 2 approaches when used in severe neuromuscular scoliosis in the setting of cerebral palsy (CP). METHODS: In total, 23 patients with minimum 2-year follow-up, major curves ≥100 degrees, and in whom treatment included posterior spinal fusion were evaluated...
May 2018: Journal of Pediatric Orthopedics
https://www.readbyqxmd.com/read/29504042/bone-mineral-density-and-nutritional-status-in-children-with-quadriplegic-cerebral-palsy
#19
Citlalli Alvarez Zaragoza, Edgar Manuel Vasquez Garibay, Andrea A García Contreras, Alfredo Larrosa Haro, Enrique Romero Velarde, Alejandro Rea Rosas, José Luis Cabrales de Anda, Israel Vega Olea
This study demonstrated the relationship of low bone mineral density (BMD) with the degree of motor impairment, method of feeding, anthropometric indicators, and malnutrition in children with quadriplegic cerebral palsy (CP). The control of these factors could optimize adequate bone mineralization, avoid the risk of osteoporosis, and would improve the quality of life. PURPOSE: The purpose of the study is to explore the relationship between low BMD and nutritional status in children with quadriplegic CP...
March 4, 2018: Archives of Osteoporosis
https://www.readbyqxmd.com/read/29486504/impact-of-hippotherapy-on-gross-motor-function-and-quality-of-life-in-children-with-bilateral-cerebral-palsy-a-randomized-open-label-crossover-study
#20
Ute Deutz, Nicole Heussen, Katharina Weigt-Usinger, Steffen Leiz, Christa Raabe, Tilman Polster, Steinbüchel Daniela, Christine Moll, Thomas Lücke, Ingeborg Krägeloh-Mann, Helmut Hollmann, Martin Häusler
This study investigated the effect of hippotherapy on gross motor function (Gross Motor Function Measure [GMFM]-66, GMFM dimension E and D) and quality of life (Child Health Questionnaire [CHQ 28], KIDSCREEN-27 parental versions) in children with bilateral spastic cerebral palsy. Seventy-three children (age: 9.1 ± 3.3 years; male = 44; GMFCS levels II = 27; III = 17; IV = 29) were randomized to an early ( n  = 35) or late ( n  = 38) treatment group. Data from 66 probands were available for further analysis...
June 2018: Neuropediatrics
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