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Biomedical subjects

Peter L Rosenbaum

Publications and source records attributed to Peter L Rosenbaum.

16 recordsLinked to original sources

Structural equation and log-linear modeling: a comparison of methods in the analysis of a study on caregivers' health.

BACKGROUND: In this paper we compare the results in an analysis of determinants of caregivers' health derived from two approaches, a structural equation model and a log-linear model, using the same data set. METHODS: The data were collected from a cross-sectional population-based sample of 468 families in Ontario, Canada who had a child with cerebral palsy (CP). The self-completed questionnaires and the home-based interviews used in this study included scales reflecting socio-economic status, child and caregiver characteristics, and the physical and psychological well-being of the caregivers. Both analytic models were used to evaluate the relationships between child behaviour, caregiving demands, coping factors, and the well-being of primary caregivers of children with CP. RESULTS: The results were compared, together with an assessment of the positive and negative aspects of each approach, including their practical and conceptual implications. CONCLUSION: No important differences were found in the substantive conclusions of the two analyses. The broad confirmation of the Structural Equation Modeling (SEM) results by the Log-linear Modeling (LLM) provided some reassurance that the SEM had been adequately specified, and that it broadly fitted the data.

Adaptation, Psychological↗

Health-related quality of life in youth with epilepsy: theoretical model for clinicians and researchers. Part I: the role of epilepsy and co-morbidity.

Children and adolescents with epilepsy are at increased risk for poor health-related quality of life (HRQL) even in the absence of active seizures. Clinicians who aim to achieve optimal seizure control also need to focus on improving HRQL. This can only be accomplished by recognizing how different features of the epilepsy itself, co-morbid conditions, as well as psychosocial factors can all make a difference to HRQL. These psychosocial factors include child, family and community/society variables that play a role in the well-being of these children. Conceptual models are relevant insofar as they provide us with a basis for hypothesizing the causal processes that lead to improved HRQL. They delineate what is meant by HRQL and highlight factors relevant to this important outcome. Researchers can use such models to test statistically and clinically relevant relationships. Clinicians can use this knowledge to direct the planning and implementation of services that are informed by these relationships, critically evaluate and then choose HRQL measures for use in clinical practice that most closely approximate what they understand HRQL is. The purpose of this review is to identify what is meant by HRQL as well as outline the theoretical and empirical basis for what it is about epilepsy, co-morbidity, and its treatment that we believe make a difference to HRQL.

Adolescent↗

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.

Child↗

Reliability of the manual ability classification system for children with cerebral palsy.

The aim of this study was to determine the reliability of family and professional assessment of manual ability using the Manual Ability Classification System (MACS) for children with cerebral palsy (CP) in the UK. Families who were taking part in a study measuring the activities and participation of children with CP were invited to classify their child's manual ability using the MACS. Postal surveys were conducted with the families and health professionals nominated by the families. Perfect agreement was assessed as a percentage; chance-corrected agreement was measured using Cohen's kappa (kappa), and reliability was determined using the intraclass correlation coefficient (ICC). Families of 91/128 (71%) children responded to the survey (53 males, 38 females; mean age 9y 11mo [SD 1y 11mo], range 6-12y) out of whom 88 indicated a single MACS level. Seventy-two children (82%) were classified with spastic CP, 12 (14%) with dyskinesia, two (2%) with ataxia, and two (2%) were not classified. There were 21, 27, 11, 10, and 19 children who were classified by their families in Gross Motor Function Classification System Levels I to V respectively; 14, 30, 18, 13, and 13 children classified by their families in MACS levels I to V. The survey of health professionals generated 60/71 (85%) responses from physiotherapists, 55/58 (93%) responses from paediatricians, and 21/24 (88%) responses from occupational therapists. There was perfect agreement between families and professionals for more than 50% of children; the indices of chance-corrected agreement ranged from kappa=0.3 to 0.5, and the reliability coefficients ranged from ICC 0.7 to 0.9. Indices of agreement and reliability between families and professionals were equivalent to those between different professionals. The MACS, therefore, offers a valid and reliable method for communicating about the manual ability of children with CP. Families and professionals may not always agree precisely on a MACS level, particularly if children's performance of manual tasks varies in different environments.

Aptitude↗

Do the abilities of children with cerebral palsy explain their activities and participation?

The aim of this study was to use family-assessed instruments and details of children's impairments to explore factors affecting the activities and participation of children with cerebral palsy (CP). A postal survey was conducted with families of a geographically defined population of children with CP aged 6 to 12 years. Family-assessed indices of children's activities and participation were the Activities Scale for Kids (ASK) and Lifestyle Assessment Questionnaire (LAQ-CP). Families also assessed children's abilities using the Gross Motor Function and Manual Ability Classification Systems (GMFCS; MACS). Details of children's impairments were available from the 4Child epidemiological database and used with the GMFCS and MACS as explanatory variables in multiple regression analyses to identify their effect on children's activities and participation. Families of 175/314 (56%) children returned an assessment using the GMFCS and 129 (41%) children participated fully by returning all the questionnaires. Full participants (72 males, 57 females) did not differ from those who did not take part by their age, sex, CP characteristics, or associated impairments: GMFCS Level I-25, Level II-43, Level III-15, Level IV-14, Level V-23; MACS Level I-14, Level II-30, Level III-18, Level IV-13, Level V-13. Scores for the ASK and LAQ-CP Physical Independence and Mobility domains were predicted well by children's movement, manual, and intellectual disability, and also, to some extent, by the presence of seizures or speech problems. LAQ-CP domains for Economic and Clinical Burden and Social Integration were not well explained by children's abilities and impairments. Family assessment, therefore, offers a useful method for measuring children's activities and participation; however, currently available instruments do not fully represent all the domains in the International Classification of Functioning, Disability and Health. Children's abilities only partially explain their activities and participation.

Aptitude↗

Reliability of family report for the Gross Motor Function Classification System.

The aim of this study was to determine the reliability of family reports for the Gross Motor Function Classification System (GMFCS), a condition-specific discriminative measure of severity of movement disability for children with cerebral palsy (CP). We conducted a cross-sectional survey using a short questionnaire with families of children with CP for whom we already had ratings of GMFCS level made by a health professional. We assessed the potentially confounding effect of whether the family had discussed the GMFCS with a professional. Two hundred and one questionnaires were posted to families of which 97 (48%) were completed and returned. Mean age of the children (53 males, 40 females) was 9 years 5 months (SD 1 year 1 month), range 6 to 11 years. Children of the families who responded encompassed the spectrum of types and distribution of impairment and severity of movement disability. The intraclass correlation coefficient (ICC) of agreement between professionals and families who had discussed their child's GMFCS level with a health professional (n=35) was 0.97 (95% confidence interval [CI] 0.96 to 0.98); for those who had not (n=52) the ICC was 0.92 (95% CI 0.91 to 0.93); and for the whole sample (n=93) the ICC was 0.94 (95% CI 0.90 to 0.96). Stability between ratings made by health professionals for children when they were in the 4 to 6 year age band of the GMFCS and ratings made by families for the same children when they were in the 6 to 12 year age band (n=35) was ICC=0.96 (95% CI 0.95 to 0.97). The excellent agreement demonstrated in this study suggests that family reports of the GMFCS made by using our questionnaire provide a reliable method for measuring gross motor function in children between 6 and 12 years old. This might be more efficient for observational studies of large populations, experimental research, or community health administration than direct observation, particularly when professional assessment is not feasible.

Adult↗

Limb distribution, motor impairment, and functional classification of cerebral palsy.

This study explored the relationships between the Gross Motor Function Classification System (GMFCS), limb distribution, and type of motor impairment. Data used were collected in the Ontario Motor Growth study, a longitudinal cohort study with a population-based sample of children with cerebral palsy (CP) in Canada (n=657; age 1 to 13 years at study onset). The majority (87.8%) of children with hemiplegia were classified as level I. Children with a bilateral syndrome were represented in all GMFCS levels, with most in levels III, IV, and V. Classifications by GMFCS and 'limb distribution' or by GMFCS and 'type of motor impairment' were statistically significantly associated (Pearson's chi2 p<0.001), though the correlation for limb distribution (two categories) by GMFCS was low (tau-b=0.43). An analysis of function (GMFCS) by impairment (limb distribution) indicates that the latter clinical characteristic does not add prognostic value over GMFCS. Although classification of CP by impairment level is useful for clinical and epidemiological purposes, the value of these subgroups as an indicator of mobility is limited in comparison with the classification of severity with the GMFCS.

Adolescent↗

Gross motor capability and performance of mobility in children with cerebral palsy: a comparison across home, school, and outdoors/community settings.

BACKGROUND AND PURPOSE: Mobility of children with cerebral palsy (CP) has generally been examined in terms of capability (what a child can do) in a controlled environment, rather than performance (what a child does do) in everyday settings. The purpose of this study was to compare gross motor capability and performance across environmental settings in children with CP. SUBJECTS: The subjects were 307 children with CP, aged 6 to 12 years, who were randomly selected across Ontario, Canada. METHODS: Children were grouped by capability (the highest of 3 items achieved on the Gross Motor Function Measure). Performance was measured via a parent-completed questionnaire on usual mobility methods in the home, at school, and in the outdoors or community. RESULTS: There were statistically significant differences in performance across settings for children in all capability groups. Children who were capable of crawling performed crawling more at home than at school or in the outdoors or community. Children who were capable of walking with support performed walking with support more at school than in the outdoors or community. Children who were capable of walking alone performed walking alone more at home than at school or in the outdoors or community, and more at school than in the outdoors or community. DISCUSSION AND CONCLUSION: The results provide evidence that children with CP with similar capability demonstrate differences in performance across settings. The results suggest that physical therapists should examine performance in the settings that are important to the child's daily life.

Cerebral Palsy↗

Stability of maternal preferences for pediatric health states in the perinatal period and 1 year later.

BACKGROUND: We have previously shown that parents of premature children provided relatively high valuation of their children's health state in adolescence. However, stability of parental preferences for future pediatric health states is unknown during the antenatal and neonatal periods and infancy. OBJECTIVE: To determine whether preference-based, health-related quality-of-life scores obtained serially from 2 cohorts (women with high-risk pregnancies [antenatal cohort] and mothers of very low-birth-weight newborns [VLBW cohort]) are stable during the first year after birth. DESIGN AND METHODS: Longitudinal cohort study. Participants included 80 high-risk pregnant women recruited at 24 +/- 2 weeks of gestation, and 75 mothers of VLBW infants recruited within 1 week of delivery. We conducted 2 to 3 standardized interviews (antenatally, at 1 week after delivery, and at the 12-month corrected age visit) using the Standard Gamble technique to elicit preferences for 5 pediatric hypothetical health states with varying disabilities. RESULTS: Seventy-three mothers with high-risk pregnancies (91%) and 72 mothers of VLBW infants (96%) completed all scheduled interviews. As expected, preference scores were affected by the level of severity of the hypothetical health states (antenatal cohort, F(4,288) = 87.0 [P<.001]; VLBW cohort, F(4,284) = 64.2 [P<.001]). At each assessment, at least 38% of mothers rated 1 or more health states as worse than death. Repeated-measures analysis showed no change in preference scores over time (antenatal cohort, F(2,144) = 1.3 [P =.29]; VLBW cohort, F(1,71) = 0.7 [P =.42]). Maternal socioemotional factors, infant severity of illness at birth, and global health at 12 months did not affect preference scores. CONCLUSION: In our population, maternal preference scores for disabling health states appear to be stable during the first year of life and are unaffected by key maternal and infant variables.

Adult↗

Rasch analysis of the Gross Motor Function Measure: validating the assumptions of the Rasch model to create an interval-level measure.

OBJECTIVES: To describe the Rasch analysis of the Gross Motor Function Measure (GMFM-88) and to demonstrate how the assumptions of unidimensionality, sample-free measurement, and test-free measurement were validated to create an interval level measure. DESIGN: Cross-sectional and longitudinal (12-mo) data from a prospective study of motor development in children with cerebral palsy (CP) were used for the analysis. SETTING: Motor assessments were completed at 18 children's ambulatory rehabilitation centers in Ontario, Canada, by pediatric physical therapists trained in the use of the GMFM-88. PARTICIPANTS: The first 537 of 682 children enrolled into a longitudinal study of motor development in children with CP. Children had a mean age of 6.43+/-2.75 years (range, 11mo-12y) with varying types and severity of CP. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: The GMFM-88. RESULTS: The Rasch analysis, in conjunction with clinical decisions, identified 66 items from the GMFM-88 that formed a unidimensional measure (GMFM-66). Assumptions of sample-free and test-free measurement were confirmed, and a user-friendly scoring program was developed. CONCLUSIONS: The GMFM-66 is an interval-level measure of gross motor function for children with CP; it should improve the scoring, interpretation, and overall clinical and research utility over the original GMFM.

Algorithms↗

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 children's 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.

Activities of Daily Living↗

Development of hand function among children with cerebral palsy: growth curve analysis for ages 16 to 70 months.

This study documents the development of hand and upper-extremity function in young children who have cerebral palsy (CP) with upper-extremity involvement using longitudinal data. Assessments of hand function and the quality of upper-extremity movement were conducted on 29 males and 22 females (mean age 36.2 months, SD 10.6; age range 16 to 60 months at baseline) and on four other occasions over 10 months. Linear mixed effects modeling was used to estimate average developmental curves and the degree of individual differences in the patterns of development which were conditional on the body-site distribution of CP and severity of impairments. Results indicate that hand function in this clinical population develops differently from overall upper-extremity skills with declines in function in upper-extremity skills being more common and pronounced among older children. However, there is substantial interindividual variation. Distribution of CP and severity of impairments were significant predictors of development. Results are discussed in terms of their clinical implications.

Age Factors↗

Accessibility and perceived clinical utility of the GMFM-66: evaluating therapists' judgements of a computer-based scoring program.

The 66-item Gross Motor Function Measure (GMFM-66) requires a computer program for scoring. The primary purpose of this study was to pilot test the scoring software and examine the perceived clinical utility of the GMFM-66 as judged by 48 pediatric physical therapists. Sixty-one percent of therapists were confident in their ability to interpret the information from the computer program following one hour spent reading the tutorial and interpretation guidelines. Ninety-three percent of respondents perceived the overall clinical utility of the GMFM-66 in terms of administration, scoring and interpretation to be the same or more clinically useful than the GMFM-88.

Cerebral Palsy↗

Prognosis for gross motor function in cerebral palsy: creation of motor development curves.

CONTEXT: Lack of a valid classification of severity of cerebral palsy and the absence of longitudinal data on which to base an opinion have made it difficult to consider prognostic issues accurately. OBJECTIVE: To describe patterns of gross motor development of children with cerebral palsy by severity, using longitudinal observations, as a basis for prognostic counseling with parents and for planning clinical management. DESIGN: Longitudinal cohort study of children with cerebral palsy, stratified by age and severity of motor function and observed serially for up to 4 years during the period from 1996 to 2001. SETTING: Nineteen publicly funded regional children's ambulatory rehabilitation programs in Ontario. PARTICIPANTS: A total of 657 children aged 1 to 13 years at study onset, representing the full spectrum of clinical severity of motor impairment in children with cerebral palsy. MAIN OUTCOME MEASURES: Severity of cerebral palsy, classified with the 5-level Gross Motor Function Classification System; function, formally assessed with the Gross Motor Function Measure (GMFM). RESULTS: Based on a total of 2632 GMFM assessments, 5 distinct motor development curves were created; these describe important and significant differences in the rates and limits of gross motor development among children with cerebral palsy by severity. There is substantial within-stratum variation in gross motor development. CONCLUSIONS: Evidence-based prognostication about gross motor progress in children with cerebral palsy is now possible, providing parents and clinicians with a means to plan interventions and to judge progress over time. Further work is needed to describe motor function of adolescents with cerebral palsy.

Adolescent↗

Secondary sexual characteristics in children with cerebral palsy and moderate to severe motor impairment: a cross-sectional survey.

OBJECTIVES: To compare the development of secondary sexual characteristics in children with cerebral palsy (CP) of moderate to severe motor impairment to children in the general population and to relate their sexual maturation to a measure of their body fat. METHODS: A multicenter, cross-sectional survey of 207 children who were 3 to 18 years of age and had CP of moderate to severe motor impairment (Gross Motor Functional Classification System [GMFCS] levels 3, 4, and 5) was conducted at 6 geographic sites; attempts were made to identify all eligible children through multiple methods and enroll them in the study. Trained research assistants performed anthropometric measurements, including subscapular skinfold thickness, determined GMFCS level, and assessed sexual maturation by Tanner stage. Secondary sexual characteristics were compared with the general population of children using cross-sectional surveys of the American Academy of Pediatrics Pediatric Research in Office Settings network and of the National Center for Health Statistics National Health and Nutrition Examination Survey (NHANES) III. Girls were classified as having begun puberty when they were at Tanner stage 2 or greater for pubic hair and breast development and to have completed puberty when they were at Tanner stage 4 or greater for pubic hair and breast development. Boys were classified as having begun puberty when they were at Tanner stage 2 or greater for pubic hair and genital development and to have completed puberty when they were at Tanner stage 4 or greater for pubic hair and genital development. RESULTS: The mean age (standard deviation) of subjects was 9.6 (4.6) years. Of the 207 subjects, 71% were white, 21% were black, and 8% were of other races; 59% were boys, and 41% were girls. Girls with CP (n = 84) entered puberty earlier than did boys with CP (n = 123). In contrast, girls with CP tended to complete puberty later than did boys with CP. Black boys and girls with CP (n = 43) entered puberty earlier than did white boys and girls with CP (n = 147). No difference between races was found in completion of puberty. Only for white children with CP were there a sufficient number of subjects for comparisons of sexual maturation to race-matched children in the general population, using data from the American Academy of Pediatrics Pediatric Research in Office Settings network and the NHANES III study. White girls with CP initiated pubic hair development (Tanner stage 2 or greater) earlier than in the general population, but the age of onset of breast development was similar to the general population, although the age distribution was different. A greater proportion of white girls with CP had early onset of breast development (Tanner stage 2 or greater), and a greater proportion had delayed onset of breast development than in the general population. White girls with CP completed breast development later than in the general population but not pubic hair development. For white boys ages 8 to 18 years with CP (n = 75), pubic hair and genital development both began earlier than in the general population, but genital development was completed later. The estimated median age of menarche for white girls with CP was 14.0 years, which was 1.3 years later (95% confidence interval: 0.7-2.3) than for the general population (estimated median age: 12.8 years; NHANES III). Relationships between sexual maturation and nutritional state, as assessed by subscapular skinfold thickness z score, were determined separately in white boys and in white girls with CP, between the ages of 8 and 18 years. For white girls with CP, more advanced sexual maturation was associated with more body fat, adjusting for age and GMFCS level (Spearman partial correlation: 0.41). In contrast, for white boys with CP, the opposite relationship pertained: more advanced sexual maturation was associated with less body fat (-0.29). CONCLUSIONS: The pattern of sexual maturation in children with CP of moderate to severe motor impairment differs from that of children in the general population. Puberty begins earlier but ends later in white children with CP, compared with white children in the general population. In addition, menarche occurs later in white girls with CP. More advanced sexual maturation was associated with more body fat in girls but less body fat in boys.

Adolescent↗