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Cerebral palsy quality of life rosenbaum

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https://www.readbyqxmd.com/read/27283848/is-a-family-centred-initiative-a-family-centred-service-a-case-of-a-conductive-education-setting-for-children-with-cerebral-palsy
#1
R Schenker, S Parush, P Rosenbaum, A Rigbi, A Yochman
BACKGROUND: From the moment a child is diagnosed as having cerebral palsy, families have to cope on a daily basis with the multifaceted challenges of life-long disability management. Family-centred service is embraced as a 'best practice' model because of accumulating evidence supporting its positive influence on parents and children's outcomes. Nevertheless, research comparing parent and provider perspectives on family-centred practices of educational service providers in education settings is scarce...
June 9, 2016: Child: Care, Health and Development
https://www.readbyqxmd.com/read/26469801/quality-of-life-in-children-with-epilepsy-how-does-it-compare-with-the-quality-of-life-in-typical-children-and-children-with-cerebral-palsy
#2
COMPARATIVE STUDY
Meron Mezgebe, Gileh-Gol Akhtar-Danesh, David L Streiner, Nora Fayed, Peter L Rosenbaum, Gabriel M Ronen
Our objective was to compare the quality of life (QoL) of children with epilepsy to that of typical children and children with cerebral palsy (CP). We measured self- and proxy-reported QoL of children with epilepsy and contrasted that with data for typical children (European KIDSCREEN project) and children with CP (SPARCLE study). Children ages 8-12 years with epilepsy were recruited from six Canadian sites. Same-aged children with CP and children in the general population aged 8-11 years came from several European countries...
November 2015: Epilepsy & Behavior: E&B
https://www.readbyqxmd.com/read/24127787/determinants-of-gross-motor-function-of-young-children-with-cerebral-palsy-a-prospective-cohort-study
#3
MULTICENTER STUDY
Doreen J Bartlett, Lisa A Chiarello, Sarah W McCoy, Robert J Palisano, Lynn Jeffries, Alyssa L Fiss, Peter Rosenbaum, Piotr Wilk
AIM: The aim of this study was to test a model of determinants of gross motor function of young children with cerebral palsy (CP). METHOD: Four hundred and twenty-nine children with CP (242 males, 187 females; mean age 3 y 2 mo, SD 11 mo) representing all levels of the Gross Motor Function Classification System (GMFCS) participated. Children in levels I to II and III to V were classified as Groups 1 and 2 respectively. Distribution of CP was quadriplegia, 44%; hemiplegia, 24%; diplegia, 23%; triplegia, 6%; and monoplegia, 2% (data not available for 1%)...
March 2014: Developmental Medicine and Child Neurology
https://www.readbyqxmd.com/read/22919403/play-and-be-happy-leisure-participation-and-quality-of-life-in-school-aged-children-with-cerebral-palsy
#4
Keiko Shikako-Thomas, NoƩmi Dahan-Oliel, Michael Shevell, Mary Law, Rena Birnbaum, Peter Rosenbaum, Chantal Poulin, Annette Majnemer
The objective of this study was to examine the association between leisure participation and quality of life (QoL) in school-age children with cerebral palsy (CP). Leisure participation was assessed using the Children's Assessment of Participation and Enjoyment (CAPE) and QoL using the Pediatric Quality of Life Inventory (PedsQL). Pearson correlation coefficients were calculated to examine the association between CAPE and PedsQL scores, and a multiple linear regression model was used to estimate QoL predictors...
2012: International Journal of Pediatrics
https://www.readbyqxmd.com/read/21955967/functional-assessments-in-the-future-of-nbpp
#5
Peter Rosenbaum
No abstract text is available yet for this article.
2011: Journal of Pediatric Rehabilitation Medicine
https://www.readbyqxmd.com/read/21950398/family-and-quality-of-life-key-elements-in-intervention-in-children-with-cerebral-palsy
#6
REVIEW
Peter Rosenbaum
Modern thinking about children's health, as embodied in the framework of the World Health Organization's International Classification of Functioning, Disability and Health - Child and Youth Version, requires that we be attentive to the 'context' of children's lives, namely their families and the well-being of their families. Family-centred services provide both a guide to the 'processes' of service by service providers and measurable evidence-based outcomes that link better 'processes' with better parental 'outcomes'...
September 2011: Developmental Medicine and Child Neurology
https://www.readbyqxmd.com/read/21569012/focus-on-function-a-cluster-randomized-controlled-trial-comparing-child-versus-context-focused-intervention-for-young-children-with-cerebral-palsy
#7
RANDOMIZED CONTROLLED TRIAL
Mary C Law, Johanna Darrah, Nancy Pollock, Brenda Wilson, Dianne J Russell, Stephen D Walter, Peter Rosenbaum, Barb Galuppi
AIM: This study evaluated the efficacy of a child-focused versus context-focused intervention in improving performance of functional tasks and mobility in young children with cerebral palsy. METHOD: A randomized controlled trial cluster research design enrolled 128 children (49 females, 79 males; age range 12 mo to 5 y 11 mo; mean age 3 y 6 mo, SD -1 y 5 mo) who were diagnosed with cerebral palsy. Children across levels I to V on the Gross Motor Classification System (GMFCS) were included in the study...
July 2011: Developmental Medicine and Child Neurology
https://www.readbyqxmd.com/read/21569011/context-therapy-a-new-intervention-approach-for-children-with-cerebral-palsy
#8
RANDOMIZED CONTROLLED TRIAL
Johanna Darrah, Mary C Law, Nancy Pollock, Brenda Wilson, Dianne J Russell, Stephen D Walter, Peter Rosenbaum, Barb Galuppi
AIM: To describe the development of context therapy, a new intervention approach designed for a randomized controlled trial. METHOD: Therapists were trained to change task and environmental factors to achieve parent-identified functional goals for children with cerebral palsy. Therapists did not provide any remediation strategies to change the abilities of the child. Theoretical constructs were developed using dynamic systems theory and the principles of family-centered care...
July 2011: Developmental Medicine and Child Neurology
https://www.readbyqxmd.com/read/19811516/development-and-validation-of-item-sets-to-improve-efficiency-of-administration-of-the-66-item-gross-motor-function-measure-in-children-with-cerebral-palsy
#9
Dianne J Russell, Lisa M Avery, Stephen D Walter, Steven E Hanna, Doreen J Bartlett, Peter L Rosenbaum, Robert J Palisano, Jan Willem Gorter
AIM: To develop an algorithmic approach to identify item sets of the 66-item version of the Gross Motor Function Measure (GMFM-66) to be administered to individual children, and to examine the validity of the algorithm for obtaining a GMFM-66 score. METHOD: An algorithmic approach was used to identify item sets of the GMFM-66 (GMFM-66-IS) using data from 95 males and 79 females with cerebral palsy (CP; mean age 14y 7mo, SD 1y 8mo, range 12y 7mo to 17y 8mo). The GMFM-66-IS scores were then validated using combined data from three Dutch studies involving 134 males and 92 females with CP (mean age 7y, SD 4y 6mo, range 1y 4mo to 13y 8mo), representing all levels of the Gross Motor Function Classification System...
February 2010: Developmental Medicine and Child Neurology
https://www.readbyqxmd.com/read/19627340/quality-of-life-instruments-for-children-and-adolescents-with-neurodisabilities-how-to-choose-the-appropriate-instrument
#10
REVIEW
Elizabeth Waters, Elise Davis, Gabriel M Ronen, Peter Rosenbaum, Michael Livingston, Saroj Saigal
AIM: There are many misconceptions about what constitutes 'quality of life' (QoL). It is often difficult for researchers and clinicians to determine which instruments will be most appropriate to their purpose. The aim of the current paper is to describe QoL instruments for children and adolescents with neurodisabilities against criteria that we think are important when choosing or developing a QoL instrument. METHOD: QoL instruments for children and adolescents with neurodisabilities were reviewed and described based on their purpose, conceptual focus, origin of domains and items, opportunity for self report, clarity (lack of ambiguity), potential threat to self-esteem, cognitive or emotional burden, number of items and time to complete, and psychometric properties...
August 2009: Developmental Medicine and Child Neurology
https://www.readbyqxmd.com/read/18821030/reliability-in-the-ratings-of-quality-of-life-between-parents-and-their-children-of-school-age-with-cerebral-palsy
#11
Annette Majnemer, Michael Shevell, Mary Law, Chantal Poulin, Peter Rosenbaum
BACKGROUND: Quality of life is recognized as an important outcome of health services. Ideally, the child's perspectives should be sought directly to define their quality of life; however, this may be limited by age and cognitive and language abilities. PURPOSE: In a sample of school-aged children with cerebral palsy (CP), we compared a parent's perspective of their child's quality of life with their child's own perspective, when feasible. METHODS: Forty-eight children completed the Pediatric Quality of Life Inventory (PedsQL) measure independently (n = 33/48, 69% Gross Motor Function Classification System (GMFCS) I; n = 6/48, 12% III-V)...
November 2008: Quality of Life Research
https://www.readbyqxmd.com/read/18754920/adolescents-with-cerebral-palsy-stability-in-measurement-of-quality-of-life-and-health-related-quality-of-life-over-1-year
#12
Michael H Livingston, Peter L Rosenbaum
This study assessed stability of measurement of quality of life (QOL) and health-related quality of life (HRQOL) over the course of 1 year among 185 adolescents (mean age 16y, SD 1 y 9 mo) with cerebral palsy (CP). Participants were classified on the Gross Motor Function Classification System as level I (n=55), II (n=30), III (n=27), IV (n=46), or V (n=27). QOL was assessed by self- (n=125) or proxy-report (n=60) with the Short Version of the Quality of Life Instrument for People with Developmental Disabilities (QOL Instrument), which describes domains of Being, Belonging, and Becoming...
September 2008: Developmental Medicine and Child Neurology
https://www.readbyqxmd.com/read/18318732/development-of-the-gross-motor-function-classification-system-for-cerebral-palsy
#13
Peter L Rosenbaum, Robert J Palisano, Doreen J Bartlett, Barbara E Galuppi, Dianne J Russell
The Gross Motor Function Classification System (GMFCS) for cerebral palsy has been widely used internationally for clinical, research, and administrative purposes. This paper recounts the ideas and work behind the creation of the GMFCS, reports on the lessons learned, and identifies some philosophical challenges inherent in trying to develop an ordered, valid, and consistent system to describe function in children and adolescents with developmental differences. It is hoped that these ideas will be useful to others who choose to expand the field with additional systems in other areas of childhood neurodisability...
April 2008: Developmental Medicine and Child Neurology
https://www.readbyqxmd.com/read/18208987/children-s-quality-of-life-separating-the-person-from-the-disorder
#14
REVIEW
Peter Rosenbaum
No abstract text is available yet for this article.
February 2008: Archives of Disease in Childhood
https://www.readbyqxmd.com/read/17961687/determinants-of-life-quality-in-school-age-children-with-cerebral-palsy
#15
Annette Majnemer, Michael Shevell, Peter Rosenbaum, Mary Law, Chantal Poulin
OBJECTIVE: To characterize the quality of life of children with cerebral palsy from the parents' and children's perspectives. STUDY DESIGN: Ninety-five children were recruited; a parent, and when feasible, the child also completed the Child Health Questionnaire and Pediatric Quality of Life Inventory. A range of predictor variables was measured relating to impairments, activity limitations, personal and environmental factors. RESULTS: Mean age was 9...
November 2007: Journal of Pediatrics
https://www.readbyqxmd.com/read/17900362/focus-on-function-a-randomized-controlled-trial-comparing-two-rehabilitation-interventions-for-young-children-with-cerebral-palsy
#16
RANDOMIZED CONTROLLED TRIAL
Mary Law, Johanna Darrah, Nancy Pollock, Peter Rosenbaum, Dianne Russell, Stephen D Walter, Theresa Petrenchik, Brenda Wilson, Virginia Wright
BACKGROUND: Children with cerebral palsy receive a variety of long-term physical and occupational therapy interventions to facilitate development and to enhance functional independence in movement, self-care, play, school activities and leisure. Considerable human and financial resources are directed at the "intervention" of the problems of cerebral palsy, although the available evidence supporting current interventions is inconclusive. A considerable degree of uncertainty remains about the appropriate therapeutic approaches to manage the habilitation of children with cerebral palsy...
2007: BMC Pediatrics
https://www.readbyqxmd.com/read/17593124/quality-of-life-and-health-related-quality-of-life-of-adolescents-with-cerebral-palsy
#17
Peter L Rosenbaum, Michael H Livingston, Robert J Palisano, Barbara E Galuppi, Dianne J Russell
This study assessed quality of life (QOL) and health-related quality of life (HRQOL) of 203 adolescents with cerebral palsy (111 males, 92 females; mean age 16y [SD 1y 9mo]). Participants were classified using the Gross Motor Function Classification System (GMFCS), as Level I (n=60), Level II (n=33), Level III (n=28), Level IV (n=50), or Level V (n=32). QOL was assessed by self (66.5%) or by proxy (33.5%) with the Quality of Life Instrument for People With Developmental Disabilities, which asks about the importance and satisfaction associated with the QOL domains of Being, Belonging, and Becoming; HRQOL was captured through proxy reports with the Health Utilities Index, Mark 3 (HUI3), which characterizes health in terms of eight attributes, each having five or six ordered levels of function...
July 2007: Developmental Medicine and Child Neurology
https://www.readbyqxmd.com/read/17355481/quality-of-life-among-adolescents-with-cerebral-palsy-what-does-the-literature-tell-us
#18
REVIEW
Michael H Livingston, Peter L Rosenbaum, Dianne J Russell, Robert J Palisano
This review describes trends in quality of life (QOL) and health-related quality of life (HRQOL) among adolescents with cerebral palsy (CP). Twenty original articles were identified by a structured search of multiple databases and grouped by design. Categories included descriptive cross-sectional studies (n=8), measurement validation studies (n=9), and exploratory qualitative studies (n=3). Several trends were apparent. First, individuals with CP are reported to have decreased QOL and HRQOL compared with a normative population in some but not all areas of well-being...
March 2007: Developmental Medicine and Child Neurology
https://www.readbyqxmd.com/read/12410191/relationship-of-nutritional-status-to-health-and-societal-participation-in-children-with-cerebral-palsy
#19
Lisa Samson-Fang, Ellen Fung, Virginia A Stallings, Mark Conaway, Gordon Worley, Peter Rosenbaum, Randy Calvert, Maureen O'donnell, Richard C Henderson, W Cameron Chumlea, Gregory S Liptak, Richard D Stevenson
OBJECTIVES: To describe nutritional status in a population-based sample of children with moderate or severe cerebral palsy (CP) and to explore the relationships between nutritional status and health and functional outcomes. STUDY DESIGN: A population-based strategy was used to enroll children with CP at 6 geographic sites. Research assistants performed anthropometric assessment, determined severity of motor impairment, and interviewed caregivers with the Child Health Questionnaire and a questionnaire designed specifically for this study...
November 2002: Journal of Pediatrics
https://www.readbyqxmd.com/read/11902369/feeding-dysfunction-is-associated-with-poor-growth-and-health-status-in-children-with-cerebral-palsy
#20
MULTICENTER STUDY
Ellen B Fung, Lisa Samson-Fang, Virginia A Stallings, Mark Conaway, Gregory Liptak, Richard C Henderson, Gordon Worley, Maureen O'Donnell, Randy Calvert, Peter Rosenbaum, William Chumlea, Richard D Stevenson
OBJECTIVE: To describe parent-reported feeding dysfunction and its association with health and nutritional status in children with cerebral palsy. DESIGN: Anthropometry was measured and z scores calculated. The Child Health Questionnaire was used to assess health status, and a categorical scale (none to severe) was used to classify subjects according to severity of feeding dysfunction. SUBJECTS: 230 children (9.7+/-4.6 years; 59% boys) with moderate to severe cerebral palsy were recruited from 6 centers in the United States and Canada...
March 2002: Journal of the American Dietetic Association
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