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The challenge of moving evidence-based measures into clinical practice: Lessons in knowledge translation

Physical and Occupational Therapy in Pediatrics 2008年第2期28卷 191-206页

作者： Ketelaar, Marjolijn Russell, Dianne J. Gorter, Jan Willem Rehabilitation Center de Hoogstraat Center of Excellence for Rehabilitation Medicine Utrecht Netherlands Department of Rehabilitation and Sports Medicine Rudolf Magnus Institute of Neuroscience University Medical Center Utrecht Netherlands NetChild Network for Childhood Disability Research Netherlands School of Rehabilitation Science CanChild Centre for Childhood Disability Research McMaster University Hamilton ON Canada Rehabilitation Center de Hoogstraat Center of Excellence for Rehabilitation Medicine Utrecht Netherlands

Once a measure has been developed and validated, it may take years for implementation into clinical practice. The purpose of this paper is to describe strategies used to increase knowledge translation and use of the gross motor function Measure (GMFM) and the gross motor function classification system (GMFCS) in clinical practice in the Netherlands and reflect on the process. Knowledge translation strategies included peer-reviewed publications, workshops, and posting information on Web sites. The impact of several of these strategies was evaluated using questionnaires focusing on therapists' self-reported familiarity and use of the measures. Peer reviewed publications did not appear to impact clinical practice. Interactive workshops were more successful at increasing use, but a gap remained between knowledge and use;the transfer into clinical practice was not optimal. A stages of change model proposed by Grol and colleagues (2007) was a helpful framework for reflecting on the process, planning, and evaluation of strategies for facilitating change in clinical practice.

关键词： Clinical practice Evidence based gross motor function classification system gross motor function Measure Implementation Knowledge translation Research uptake

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Inconsistencies with physical functioning and the child health questionnaire in children with cerebral palsy

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JOURNAL OF PEDIATRICS 2008年第2期153卷 199-202页

作者： Vargus-Adams, Jilda N. Cincinnati Childrens Hosp Med Ctr Div Pediat Rehabil Dept Pediat Cincinnati OH 45229 USA Cincinnati Childrens Hosp Med Ctr Ctr Biostat & Epidemiol Cincinnati OH 45229 USA Univ Cincinnati Sch Med Dept Phys Med & Rehabil Cincinnati OH USA

Objectives To explore the performance of the Physical functioning (PF) subscale of the Child Health Questionnaire (CHQ) in children with cerebral palsy (CP). Study design Parents of 177 children and adolescents (age 3 to 18 years) with CP completed the CHQ -Parent Form 50. Severity of CP was assessed using the 5-level gross motor function classification system (GMFCS), in which higher levels reflect more severe impairment. Results PF scores were negatively correlated with GMFCS classification (R = -0.62) and were distributed bimodally in subjects with severe motor impairment. For GMFCS classifications IV and V (n = 59), PF scores were very low (means, 9 to 28;medians, 0 to 8);however, 12% of these subjects had excellent PF scores (> 88) despite being nonambulatory. Conclusions Although the CHQ PF subscale correlated well with the GMFCS, the CHQ questions on physical functioning resulted in unexpected responses in approximately I in 8 subjects with severe CP. These unanticipated responses to the PF subscale questions may be due to ambiguity in the questions (which do not differentiate between health problems and disability) or to alternative parental interpretation of physical functioning. Confusion in differentiating health status and functional status may make the CHQ less useful in children with significant disabilities.

关键词： CHQ Child Health Questionnaire CP Cerebral palsy GMFCS gross motor function classification system HUI3 Health Utilities Index–Mark 3 PF Physical functioning (subscale)

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Growth and nutritional status in residential center versus home-living children and adolescents with quadriplegic cerebral palsy

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JOURNAL OF PEDIATRICS 2007年第2期151卷 161-166页

作者： Henderson, Richard C. grossberg, Richard I. Matuszewski, Jeanine Menon, Nitasha Johnson, Julie Kecskemethy, Heidi H. Vogel, Lois Ravas, Rebecca Wyatt, Megan Bachrach, Steven J. Stevenson, Richard D. Univ N Carolina Dept Orthopaed Chapel Hill NC 27599 USA Univ N Carolina Dept Biostat Chapel Hill NC 27599 USA Ctr Children Disabil Hattie Larlham Ctr Mantua OH USA Childrens Care Hosp & Sch Sioux Falls SD USA Dupont Hosp Children Neumours Biomed Res Wilmington DE USA HMS Sch Children Cerebal Palsy Philadelphia PA USA Univ Virginia Dept Pediat Charlottesville VA 22903 USA

Objective To describe growth and nutrition in nonambulatory youth (<19 years of age) with cerebral palsy (CP) living in residential centers compared with similar youth living at home. Study design A multicenter, cross-sectional, single observational assessment of 75 subjects living in a residential care facility compared with 205 subjects living at home Primary outcome measures included anthropometric measures of height, weight, triceps, and subscapular skinfolds, and mid-upper-ann muscle area. Z scores were calculated from reference values for healthy children. Age, use of a feeding tube, and gross motor functional classification system (GMFCS) level were included as important confounders. Results Use of a feeding tube was associated with higher shinfold Z scores, and a significantly higher percentage of the residential sul jects had a feeding tube. Height, weight, and arm-muscle area Z scores all diverged (negatively) from reference values with age, and the residential sul jects were on average older than the home-living sub jects. After controlling for age, GMFCS level and use of a feeding tube, residential living was associated with significantly greater weight, height, skinfold thielmesses, and mid-arm muscle area Z scores. Conclusion Poor growth and nutrition in children with CP is a prevalent, important, and complex problem. Although factors intrinsic to the condition of CP likely play a significant role, it is also clear that environmental factors, including the living situation of the child, can have an impact.

关键词： CCHS Children’s Care Hospital and School CP Cerebral palsy GMFC gross motor function classification system HL Hattie Larlham Center for Children with Disabilities HMS HMS School for Children with Cerebral Palsy NAGCePP North American Growth in Cerebral Palsy Project

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Association between gross motor function (GMFCS) and manual ability (MACS) in children with cerebral palsy.: A population-based study of 359 children

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BMC MUSCULOSKELETAL DISORDERS 2007年第1期8卷 1-7页

作者： Carnahan, Katharina Delhusen Arner, Marianne Hagglund, Gunnar Helsingborg Hosp Dept Orthopaed S-25187 Helsingborg Sweden Lund Univ Dept Orthopaed S-22185 Lund Sweden

Background: The gross motor function classification system (GMFCS) has become an important tool to describe motor function in children with Cerebral Palsy (CP). The Manual Ability classification system (MACS) was developed recently as a corresponding classification of manual ability. The aim of this study was to describe the association between gross motor function and manual ability in a total population of children with cerebral palsy. Methods: 365 children, born 1992 to 2001, who were registered in a population-based health care programme (CPUP) for children with CP living in the south of Sweden were included in the study. GMFCS was evaluated by the child's physiotherapist and MACS by the occupational therapist. CP diagnosis and subtype were determined by the neuropaediatrician at or after the age of four. Results: GMFCS levels were available in all 365 children, MACS levels in 359 (98%). There was a poor overall correlation between gross motor function and manual ability. However, different associations between gross motor function and manual ability were found in the different diagnostic subtypes. Children with spastic hemiplegia generally had a lower level of manual ability than gross motor function (p < 0.001). The reverse association was generally found in children with spastic diplegia (p < 0.001). Children with dyskinetic CP had large limitations in both gross motor function and manual ability, with no significant discrepancy between GMFCS and MACS levels. Conclusion: gross motor function and manual ability are often discrepant in children with CP, and the patterns seem to vary across the different subgroups based on the predominant neurological findings. To give a complete clinical picture when evaluating these children, both aspects have to be described. The GMFCS and the MACS seem to work well in this context and seem very useful in population-based studies, in health care registers for children with CP, and in clinical practice.

关键词： Cerebral Palsy functional Grade gross motor function classification system Manual Ability Spastic Diplegia

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Focus on function - A randomized controlled trial comparing two rehabilitation interventions for young children with cerebral palsy

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BMC Pediatrics 2007年第1期7卷 1-12页

作者： Law, Mary Darrah, Johanna Pollock, Nancy Rosenbaum, Peter Russell, Dianne Walter, Stephen D. Petrenchik, Theresa Wilson, Brenda Wright, Virginia CanChild Centre for Childhood Disability Research McMaster University Hamilton ON L8S 1C7 1400 Main St W. Canada School of Rehabilitation Science McMaster University Hamilton ON L8S 1C7 Main St W. Canada Department of Physical Therapy Faculty of Rehabilitation Medicine University of Alberta Edmonton Edmonton AB T6G 2G4 Canada Department of Pediatrics McMaster University Hamilton ON L8S 1C7 1400 Main St W. Canada Department of Clinical epidemiology and Biostatistics McMaster University Hamilton ON L8N 3Z5 1200 Main Street West Canada Decision Support Research Team Calgary Health Region Calgary AB T2W 3N2 10101 Southport Road SW Canada Bloorview Research Institute Toronto ON M4G 1R8 150 Kilgour Road Canada

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. The primary objective of this project is to conduct a multi-site randomized clinical trial to evaluate the efficacy of a task/context-focused approach compared to a child-focused remediation approach in improving performance of functional tasks and mobility, increasing participation in everyday activities, and improving quality of life in children 12 months to 5 years of age who have cerebral palsy. Method/Design: A multi-centred randomized controlled trial research design will be used. Children will be recruited from a representative sample of children attending publicly-funded regional children's rehabilitation centers serving children with disabilities in Ontario and Alberta in Canada. Target sample size is 220 children with cerebral palsy aged 12 months to 5 years at recruitment date. Therapists are randomly assigned to deliver either a context-focused approach or a child-focused approach. Children follow their therapist into their treatment arm. Outcomes will be evaluated at baseline, after 6 months of treatment and at a 3-month follow-up period. Outcomes represent the components of the International classification of functioning, Disability and Health, including body function and structure (range of motion), activities (performance of functional tasks, motor function), participation (involvement in formal and informal activities), and environment (parent perceptions of care, paren

关键词： Cerebral Palsy Body function Dynamic system Theory functional Task gross motor function classification system

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Cerebral palsy in a total population of 4-11 year olds in southern Sweden. Prevalence and distribution according to different CP classification systems

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BMC Pediatrics 2007年第1期7卷 1-8页

作者： Westbom, Lena Hagglund, Gunnar Nordmark, Eva Division of Paediatrics Department of Clinical Sciences (Lund) Lund University Lund Sweden Department of Orthopaedics Department of Clinical Sciences (Lund) Lund University Lund Sweden Division of Physiotherapy Department of Health Sciences Lund University Lund Sweden Children's Hospital University Hospital SE 221 85 Lund Sweden

Background: The aim of this study was to investigate the prevalence of cerebral palsy (CP) as well as to characterize the CP population, its participation in a secondary prevention programme (CPUP) and to validate the CPUP database. Methods: The study population was born 1990-1997 and resident in Skåne/Blekinge on Jan 1st 2002. Multiple sources were used. Irrespective of earlier diagnoses, neuropaediatrician and other professional medical records were evaluated for all children at the child habilitation units. The CPUP database and diagnosis registers at hospital departments were searched for children with CP or psychomotor retardation, whose records were then evaluated. To enhance early prevention, CP/probable CP was searched for also in children below four years of age born 1998-2001. Results: The prevalence of CP was 2.4/1,000 (95% CI 2.1-2.6) in children 4-11 years of age born in Sweden, excluding post-neonatally acquired CP. Children born abroad had a higher prevalence of CP with more severe functional limitations. In the total population, the prevalence of CP was 2.7/1,000 (95% CI 2.4-3.0) and 48% were GMFCS-level I (the mildest limitation of gross motor function). One third of the children with CP, who were born or had moved into the area after a previous study in 1998, were not in the CPUP database. The subtype classification in the CPUP database was adjusted in the case of every fifth child aged 4-7 years not previously reviewed. Conclusion: The prevalence of CP and the subtype distribution did not differ from that reported in other studies, although the proportion of mild CP tended to be higher. The availability of a second opinion about the classification of CP/CP subtypes is necessary in order to keep a CP register valid, as well as an active search for undiagnosed CP among children with other impairments. © 2007 Westbom et al;licensee BioMed Central Ltd.

关键词： Cerebral Palsy gross motor function classification system Spastic Diplegia gross motor function classification system Level Spastic Hemiplegia

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Pediatric endurance and limb strengthening for children with cerebral palsy (PEDALS) - A randomized controlled trial protocol for a stationary cycling intervention

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BMC Pediatrics 2007年第1期7卷 1-9页

作者： Fowler, Eileen G. Knutson, Loretta M. DeMuth, Sharon K. Sugi, Mia Siebert, Kara Simms, Victoria Azen, Stanley P. Winstein, Carolee J. Department of Orthopedics UCLA Orthopaedic Hospital Center for Cerebral Palsy Los Angeles CA United States Department of Physical Therapy Missouri State University Springfield MO United States Division of Biokinesiology and Physical Therapy University of Southern California Los Angeles CA United States Department of Preventive Medicine Keck School of Medicine University of Southern California Los Angeles CA United States

Background: In the past, effortful exercises were considered inappropriate for children with spastic cerebral palsy (CP) due to concern that they would escalate abnormalities including spasticity and abnormal movement patterns. Current scientific evidence indicates that these concerns were unfounded and that therapeutic interventions focused on muscle strengthening can lead to improved functional ability. However, few studies have examined the potential benefits of cardiorespiratory fitness exercises in this patient population. Methods/design: The rationale and design of a randomized controlled trial examining the effects of a stationary cycling intervention for children with CP are outlined here. Sixty children with spastic diplegic CP between the ages of 7 and 18 years and gross motor function classification system (GMFCS) levels of I, II, or III will be recruited for this study. Participants will be randomly assigned to either an intervention (cycling) or a control (no cycling) group. The cycling intervention will be divided into strengthening and cardiorespiratory endurance exercise phases. During the strengthening phase, the resistance to lower extremity cycling will be progressively increased using a uniquely designed limb-loaded mechanism. The cardiorespiratory endurance phase will focus on increasing the intensity and duration of cycling. Children will be encouraged to exercise within a target heart rate (HR) range (70 - 80% maximum HR). Thirty sessions will take place over a 10-12 week period. All children will be evaluated before (baseline) and after (follow-up) the intervention period. Primary outcome measures are: Knee joint extensor and flexor moments, or torque;the gross motor function Measure (GMFM);the 600 Yard Walk-Run test and the Thirty-Second Walk test (30 sec WT). Discussion: This paper presents the rationale, design and protocol for Pediatric Endurance and Limb Strengthening (PEDALS);a Phase I randomized controlled trial evaluating the efficacy

关键词： Cerebral Palsy Cardiorespiratory Fitness gross motor function classification system Spastic Cerebral Palsy Cycling Intervention

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Determinants of life quality in school-age children with cerebral palsy

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JOURNAL OF PEDIATRICS 2007年第5期151卷 470-475页

作者： Majnemer, Annette Shevell, Michael Rosenbaum, Peter Law, Mary Poulin, Chantal McGill Univ Dept Neurol & Neurosurg Sch Phys & Occupat Therapy Montreal PQ Canada McGill Univ Dept Pediat Montreal PQ Canada McMaster Univ Dept Pediat Hamilton ON Canada McMaster Univ Sch Rehabil Sci Hamilton ON Canada

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 9.3 +/- 2.1 years;63.2% were male, and almost half had mild motor impairment (47% gross motor function classification system level 1). Mean physical well-being (Child Health Questionnaire) was 39.6 +/- 16.9 with 50% < 40;and mean psychosocial well-being was 43.0 +/- 11.3 with 53.8% < 40. Similarly, with the Pediatric Quality of Life Inventory, 61% had summary scores < 1 SD. Scores of parents and their children were significantly correlated (physical: r = .59, P < .0001: psychosocial: r = .39, P = .01);however, children rated themselves higher. Conclusions Results indicate that quality of life is highly variable in children with cerebral palsy, with about half experiencing a life quality similar to typically developing children. motor and other activity limitations are indicators of physical but not psychosocial -well-being. Family functioning, behavioral difficulties, and motivation are important predictors of social-emotional adaptation. Determinants of life quality may guide resource allocation and health promotion initiatives to optimize health of the child and family.

关键词： CHQ Child Health Questionnaire CP Cerebral palsy DMQ Dimensions of Mastery Questionnaire GMFCS gross motor function classification system GMFM gross motor function Measure HUI-3 Health Utilities Index PedsQL Pediatric Quality of Life Inventory QOL Quality of life SD Standard deviation VABS Vineland Adaptive Behavior Scale

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Parenting style impacts on quality of life in children with cerebral palsy

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JOURNAL OF PEDIATRICS 2007年第1期151卷 56-60页

作者： Aran, Adi Shalev, Ruth S. Biran, Gau gross-Tsur, Varda Shaare Zedek Med Ctr Neuropediat Unit IL-91031 Jerusalem Israel

Objective To assess the impact of parenting style and disease severity on quality of life (QOL) in children with cerebral Palsy (CP). Study design Thirty-nine children with CP, their siblings, and their parents participated in the study. Probands and siblings, ages 6 to 18 years, completed questionnaires on parenting style (accepting, rejecting, controlling, and autonomy allowing) using the Children's Report of Parental Behavior Inventory. Parents completed generic (Child Health Questionnaire [CHQ]) and disease-specific (Pediatric Outcomes Data Collecting Instrument [PODCI]) QOL questionnaires for both children. A physician determined disease severity with the gross motor function classification system. Results In children with CP, parenting style positively correlated with the CHQ scores: physical summary and psychosocial summary (r = 0.40, P = .01) and family activities scale (r = 0.34, P = .03). Autonomy allowing parenting style impacted on psychosocial aspects of QOL, as reflected by CHQ scores, more than the degree of disability. In other domains of QOL, the effect of parenting style was greater than IQ, anxiety, and socioeconomic status. Conclusions Parenting style is a significant factor in QOL in CP and the only known factor to impact on the psychosocial domains of the CHQ, exceeding the effect of disease severity. Because QOL is an important treatment goal in children with CP, early family interventions, particularly those focusing on parenting style, should be considered.

关键词： CHQ Child Health Questionnaire CP Cerebral palsy GMFCS gross motor function classification system PODCI Pediatric Outcomes Data Collecting Instrument QOL Quality of life

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Serum prealbumin and albumin concentrations do not reflect nutritional state in children with cerebral palsy

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JOURNAL OF PEDIATRICS 2005年第5期147卷 695-697页

作者： Lark, RK Williams, CL Stadler, D Simpson, SL Henderson, RC Samson-Fang, L Worley, G Duke Univ Med Ctr Dept Surg Div Orthoped Durham NC 27710 USA Duke Univ Med Ctr Dept Pediat Durham NC 27710 USA Univ Utah Dept Gen Pediat Salt Lake City UT USA Univ Utah Ctr Pediat Nutr Res Salt Lake City UT USA Oregon Hlth Sci Univ Gen Clin Res Ctr Portland OR 97201 USA Univ N Carolina Dept Biostat Chapel Hill NC USA Univ N Carolina Dept Orthoped Chapel Hill NC USA Univ N Carolina Dept Pediat Chapel Hill NC USA

Serum prealbumin concentration (PALB) and albumin concentration (ALB) were evaluated as markers of undernutrition in 107 children with cerebral palsy (CP) age 2 to 18 years. PALB and ALB were rarely below the normal reference ranges and showed little to no correlation with anthropoinetric measures (eg, skinfolds, midarm fat area), growth (height), severity of CP (eg, feeding dysfunction, motor impairment), or general health.

关键词： ALB Albumin concentration CP Cerebral palsy GMFCS gross motor function classification system PALB Prealbumin concentration

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