Robert J. Palisano

Development and reliability of a system to classify gross motor function in children with cerebral palsy

To address the need for a standardized system to classify the gross motor function of children with cerebral palsy, the authors developed a five‐level classification system analogous to the staging and grading systems used in medicine. Nominal group process and Delphi survey consensus methods were used to examine content validity and revise the classification system until consensus among 48 experts (physical therapists, occupational therapists, and developmental pediatricians with expertise in cerebral palsy) was achieved. Interrater reliability (k) was 0.55 for children less than 2 years of age and 0.75 for children 2 to 12 years of age. The classification system has application for clinical practice, research, teaching, and administration.

Content validity of the expanded and revised Gross Motor Function Classification System

The aim of this study was to validate the expanded and revised Gross Motor Function Classification System (GMFCS‐E&R) for children and youth with cerebral palsy using group consensus methods. Eighteen physical therapists participated in a nominal group technique to evaluate the draft version of a 12‐ to 18‐year age band. Subsequently, 30 health professionals from seven countries participated in a Delphi survey to evaluate the revised 12‐ to 18‐year and 6‐ to 12‐year age bands. Consensus was defined as agreement with a question by at least 80% of participants. After round 3 of the Delphi survey, consensus was achieved for the clarity and accuracy of the descriptions for each level and the distinctions between levels for both the 12‐ to 18‐year and 6‐ to 12‐year age bands. Participants also agreed that the distinction between capability and performance and the concept that environmental and personal factors influence methods of mobility were useful for classification of gross motor function. The results provide evidence of content validity of the GMFCS‐E&R. The GMFCS‐E&R has utility for communication, clinical decision making, databases, registries, and clinical research.

Stability of the Gross Motor Function Classification System

The aim of this study was to assess the stability of the Gross Motor Function Classification System (GMFCS) by examining whether children with cerebral palsy (CP) remain in the same level over time. Participants were 610 children with CP (342 males, 268 females; mean age 6y 9mo [SD 2y 10mo]), range 16mo-13y). Children were assessed 2 to 7 times (mean 4.3) at 6-month (children <6y old) or 12-month(children >or=6y old) intervals. Seventy-three per cent of children remained in the same level for all ratings. The weighted kappa coefficient between the first and last ratings was 0.84 for children less than 6 years old and 0.89 for children at least 6 years old, indicating excellent chance-corrected agreement. Children initially classified in Levels I and V were least likely to be reclassified. There was a tendency for children younger than 6 years who were reclassified to be done so to a lower level of ability. The results provide evidence of stability of the GMFCS.

Development of the Gross Motor Function Classification System for cerebral palsy

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.

Stability and Decline in Gross Motor Function among Children and Youth with Cerebral Palsy Aged 2 to 21 Years

This paper reports the construction of gross motor development curves for children and youth with cerebral palsy (CP) in order to assess whether function is lost during adolescence. We followed children previously enrolled in a prospective longitudinal cohort study for an additional 4 years, as they entered adolescence and young adulthood. The resulting longitudinal dataset comprised 3455 observations of 657 children with CP (369 males, 288 females), assessed up to 10 times, at ages ranging from 16 months to 21 years. Motor function was assessed using the 66‐item Gross Motor Function Measure (GMFM‐66). Participants were classified using the Gross Motor Function Classification System (GMFCS). We assessed the loss of function in adolescence by contrasting a model of function that assumes no loss with a model that allows for a peak and subsequent decline. We found no evidence of functional decline, on average, for children in GMFCS Levels I and II. However, in Levels III, IV, and V, average GMFM‐66 was estimated to peak at ages 7 years 11 months, 6 years 11 months, and 6 years 11 months respectively, before declining by 4.7, 7.8, and 6.4 GMFM‐66 points, in Levels III, IV, and V respectively, as these adolescents became young adults. We show that these declines are clinically significant.

Effect of environmental setting on mobility methods of children with cerebral palsy.

The aim of this study was to: (1) describe the usual mobility methods of children with cerebral palsy (CP) at home, school, and outdoors or in the community and (2) examine whether children with CP are more dependent on adult assistance for mobility in certain settings. The participants were a stratified random sample of 636 children with CP (355 males and 281 females; 2 to 12 years of age, mean 6.8 years SD 2.7), receiving rehabilitation services in Ontario, Canada. Children were grouped by age and Gross Motor Function Classification System (GMFCS) level. Among the five levels of the GMFCS, there were 185 children classified at level I, 81 children at level II, 113 children at level III, 132 children at level IV, and 125 children at level V. Information on childrens usual mobility was obtained by parent report. The results of logistic regression indicated that compared with the school setting, children were more dependent on adult assistance for mobility when outdoors/in the community and less dependent at home. The majority of children aged from 4 to 12 years at levels III to V used wheelchair mobility at school and outdoors or in the community, however, only a small percentage self-propelled their wheelchair or used powered mobility. Of the children aged 4 to 12 years at level V, 39% were carried at home. The findings suggest that environmental setting is an important consideration for assessment and intervention to improve mobility of children with CP. For children who do not walk, attention should be given to the needs of caregivers and factors that are important for successful powered mobility.

Quality of life among adolescents with cerebral palsy: what does the literature tell us?

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. Second, functional status measures such as the Gross Motor Function Classification System are reliable indicators of variations in physical function, but do not correlate consistently with psychosocial well‐being. Third, although adolescents with CP have different life issues than adults or children, limited research on factors associated with QOL and HRQOL has been described for this age range. We recommend that clinicians and researchers interested in assessing well‐being among adolescents with CP include participants from across the spectrum of motor impairment, allow adolescents to self‐report whenever possible, and assess adolescents independently, rather than including them with individuals from other age groups or clinical populations.

Participation in Home, Extracurricular, and Community Activities among Children and Young People with Cerebral Palsy.

Aim  Participation in home, extracurricular, and community activities is a desired outcome of rehabilitation services for children and young people with cerebral palsy (CP). The purpose of this study was to investigate the effect of age and gross motor function on participation among children and young people with CP.

Goal Attainment Scaling: Its Use in Evaluating Pediatric Therapy Programs

Goal attainment scaling is becoming an increasingly popular technique for evaluating the functional goal attainment of children receiving pediatric therapy services. This article reports on the experiences of the authors in conducting formal program evaluations using this individualized measurement approach. Goal attainment scaling is described, its utility is assessed, and issues in its use are identified. The article considers the pros and cons of the technique, highlights the key decisions required to use goal attainment scaling effectively, and provides standard criteria and procedures for its use in pediatric settings.

Quality of life and health-related quality of life of adolescents with cerebral palsy

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. GMFCS level was not a source of variation for QOL domain scores but was significantly associated with the eight HRQOL attributes and overall HUI3 utility scores (p<0.05). Some QOL domain scores varied significantly by type of respondent (self vs proxy; p<0.05). Overall HUI3 utility values were significantly but weakly correlated with QOL Instrument scores for Being (r=0.37), Belonging (r=0.17), Becoming (r=0.20), and Overall QOL (r=0.28), and thus explain up to 14% of the variance (r2). These findings suggest that although QOL and HRQOL are somewhat related conceptually, they are different constructs and need to be considered as separate dimensions of the lives of people with functional limitations.