PubMed Health⌕ Search

Biomedical subjects

P L Rosenbaum

Publications and source records attributed to P L Rosenbaum.

At least 19 recordsLinked to original sources
PubMed2006

Who best to make the assessment? Professionals' and families' classifications of gross motor function in cerebral palsy are highly consistent.

AIM: To determine the reliability of family assessment for the Gross Motor Function Classification System (GMFCS) for children with cerebral palsy in the UK. METHODS: Families of a complete geographically defined population of children with cerebral palsy between 6 and 12 years old were identified from the 4Child epidemiological database. Postal surveys were conducted with the families and any of the child's health professionals that were nominated by the families. RESULTS: Families of 129/314 eligible children took part in the study (41%). The indices of agreement and reliability between families and professionals were also equivalent to those observed between the professionals (kappa = 0.5, ICC > or = 0.9). Reliability coefficients were higher when more of the professionals classified children using direct observation rather than only reviewing their clinical records. CONCLUSIONS: Despite excellent reliability, families and professionals did not always agree exactly on a child's GMFCS level. Classifications may differ due to children's varying performance in different environments, in which case families will almost certainly know their children's ability in a broader range of settings. The indices of reliability of family assessment for the GMFCS meet the recommended criteria for use with individuals and groups, indicating that the method is suitable for use in research studies and clinical practice.

Cerebral Palsy↗
PubMed2001

Gross motor function of children with down syndrome: creation of motor growth curves.

OBJECTIVE: To create gross motor function growth curves for children with Down syndrome (DS) and to estimate the probability that motor functions are achieved by different ages. DESIGN: Nonlinear growth curve analysis by using a 2-parameter (rate, upper limit) model. SETTING: Early intervention programs, schools, and children's homes. PARTICIPANTS: One hundred twenty-one children with DS, ages 1 month to 6 years. MAIN OUTCOME MEASURES: Gross Motor Function Measure (GMFM) and severity of motor impairment. RESULTS: The curves for children with mild (n = 51) and moderate/severe (n = 70) impairment were characterized by a greater increase in GMFM scores during infancy and smaller increases as the children approached the predicted maximum score of 85.9 or 87.9. The estimated probability that a child would roll by 6 months was 51%; sit by 12 months, 78%; crawl by 18 months, 34%; walk by 24 months, 40%; and run, walk up stairs, and jump by 5 years, 45% to 52%. CONCLUSIONS: Children with DS require more time to learn movements as movement complexity increases. Impairment severity affected the rate but not the upper limit of motor function. The results have implications for counseling parents, making decisions about motor interventions, and anticipating the time frame for achievement of motor functions.

Child↗
PubMed2000

Impact of extreme prematurity on families of adolescent children.

OBJECTIVES: To compare the impact of burden of illness on families of teenaged children who were extremely low birth weight (ELBW) with that of members of a term control group (C) and to determine whether the attitudes toward active treatment of very immature infants differ between the 2 cohorts. DESIGN: In a cross-sectional survey, parents of 145 (86%) of 169 members of an ELBW cohort and 123 (85%) of 145 members of a control cohort completed a 23-item self-completed questionnaire encompassing occupational, marital, and family-related issues and attitudes toward treatment of infants of borderline viability. RESULTS: Both positive (P =.0003) and negative (P <.005) effects on marriage were higher in parents of the ELBW group; although more parents in the ELBW group felt that their child had brought their families closer together (P =.0001), their child's health had adversely affected their emotional health (P =.02) and that of other children in the family (P =.003). Despite this result, a significant proportion of parents from both cohorts supported saving all infants (ELBW 68%; C 58%) and favored the role of parents in decision making (ELBW 98%; C 97%). CONCLUSIONS: In the long term, it appears that parents of ELBW children have adjusted fairly well to their work and family life. Although some negative effects were identified, there was still considerable support for active treatment of infants of borderline viability.

Adaptation, Psychological↗
PubMed2000

Quality of life in spina bifida: importance of parental hope.

BACKGROUND AND AIMS: Prognosis in spina bifida (SB) is often based only on neurological deficits present at birth. We hypothesised that both parental hope and the neurophysical examination predict quality of life in children and adolescents with SB. METHODS: A previously validated disease and age specific health related quality of life (HRQL) instrument was posted to families of children (aged 5-12 years) and adolescents (aged 13-20 years) with SB. We measured parental hope, determined the child's current physical function, and obtained retrospective data on the neonatal neurophysical examination (NPE). Regression analysis modelled HRQL firstly as a dependent variable on parental hope and NPE ("birth status"); and secondly on parental hope and current physical function ("current function"). RESULTS: Response rates were 71% (137 of 194) for families of children, and 54% (74 of 138) for families of adolescents. NPE data were available for 121 children and 60 adolescents. In children, the birth status model predicted 26% of the variability (R(2) hope 21%) compared with 23% of the variability (R(2) hope 23%)in the adolescents. The current function model explained 47% of the variability (R(2) hope 19%) in children compared with 31% of the variability (R(2) hope 24%) in the adolescents. CONCLUSIONS: In both age groups, parental hope was more strongly associated with the HRQL than neonatal or current physical deficits. A prospective study is required to determine whether a causal relation exists between parental hope and HRQL of children and adolescents with SB.

Adolescent↗
PubMed2000

School difficulties at adolescence in a regional cohort of children who were extremely low birth weight.

OBJECTIVES: To compare measures of psychometric assessment and school difficulties in a cohort of extremely low birth weight (ELBW) teenagers and term controls, and to determine whether there is stability in psychometric measures between age 8 and the teen years. STUDY DESIGN: Longitudinal follow-up; geographically defined region. PARTICIPANTS: 150 of 169 (89%) ELBW survivors born between 1977 and 1982 and 124 of 145 (86%) sociodemographically matched term controls between 12 and 16 years of age. Psychometric measures: Wechsler Intelligence Scale for Children-Revised, Wide Range Achievement Test-Revised, and a validated parent questionnaire. RESULTS: Neurosensory impairments were present in 28% of ELBW and 1% of controls. The mean Wechsler Intelligence Scale for Children-Revised scores were ELBW: 89 +/- 19 and controls: 102 +/- 13. ELBW children did less well on Wide Range Achievement Test-Revised Reading, Spelling, and Arithmetic measures with mean scores in the range from 75 to 85. ELBW children <750 g were more disadvantaged, compared with those >/=750 g. A significantly higher proportion of ELBW children were receiving special educational assistance and/or had repeated a grade (ELBW: 58%; controls: 13%; odds ratio: 9.0). Paired analysis of within-cohort data at age 8 and teen years showed that for both cohorts Arithmetic scores declined, but there were small improvements in other measures, predominantly in the term children. CONCLUSIONS: Differences of 13 to 18 points in psychometric measures in ELBW teens compared with controls are both statistically significant and clinically relevant. Decreasing birth weight was associated with increased risk on all measures. The high utilization of special educational resources has economic implications, and the incremental cost attributable to being extremely premature needs to be determined.

Achievement↗
PubMed2000

Parental perspectives of the health status and health-related quality of life of teen-aged children who were extremely low birth weight and term controls.

OBJECTIVES: To compare the health status and health-related quality of life of teen-aged children who were extremely low birth weight (ELBW) with matched controls from the perspective of their parents. STUDY DESIGN: Geographically defined cohort; longitudinal follow-up; cross-sectional interviews. PARTICIPANTS: parents of 149/169 (88%) ELBW children between 12 and 16 years of age (including 41 children with neurosensory impairments) and 126/145 (87%) parents of term controls. Health status of the teenagers was classified according to the 6 attributes of the Health Utilities Index Mark 2, based on information obtained during parent interviews. Parents were asked to imagine themselves living in their own child's health state and 4 preselected hypothetical health states when providing directly measured standard gamble utility scores. RESULTS: Parents of ELBW children reported a higher frequency and more complex functional limitations than parents of controls for their own children's health status. Also, the mean utilities were lower (ELBW =.91 vs controls =. 97) and the variability in their scores was greater. There were no differences in the valuation of the hypothetical health states provided by parents of ELBW and control children. CONCLUSIONS: ELBW children were reported to have a greater burden of disability than were control children based on parental descriptions. Nonetheless, parents of ELBW children, on average, rated the health-related quality of life of their children fairly high. Thus, differences in reported functional status are not necessarily associated with lower utility scores.

Activities of Daily Living↗
PubMed2000

Improved scaling of the gross motor function measure for children with cerebral palsy: evidence of reliability and validity.

BACKGROUND AND PURPOSE: This study examined the reliability, validity, and responsiveness to change of measurements obtained with a 66-item version of the Gross Motor Function Measure (GMFM-66) developed using Rasch analysis. SUBJECTS AND METHODS: The validity of measurements obtained with the GMFM-66 was assessed by examining the hierarchy of items and the GMFM-66 scores for different groups of children from a stratified random community-based sample of 537 children with cerebral palsy (CP). A subset of 228 children who had been reassessed at 12 months was used to test the hypothesis that children who are young (<5 years of age) and have "mild" CP will demonstrate greater change in GMFM-66 scores than children who are older ((5 years of age) and whose CP is more severe. Data from an additional 19 children with CP who were assessed twice, one week apart, were used to examine test-retest reliability. RESULTS: The overall changes in GMFM-66 scores over 12 months and a time ( severity ( age interaction supported our hypotheses. Test-retest reliability was high (intraclass correlation coefficient=.99). CONCLUSION AND DISCUSSION: This study demonstrated that the GMFM-66 has good psychometric properties. By providing a hierarchical structure and interval scaling, the GMFM-66 can provide a better understanding of motor development for children with CP than the 88 item GMFM and can improve the scoring and interpretation of data obtained with the GMFM.

Activities of Daily Living↗
PubMed2000

Validation of a model of gross motor function for children with cerebral palsy.

BACKGROUND AND PURPOSE: Development of gross motor function in children with cerebral palsy (CP) has not been documented. The purposes of this study were to examine a model of gross motor function in children with CP and to apply the model to construct gross motor function curves for each of the 5 levels of the Gross Motor Function Classification System (GMFCS). SUBJECTS: A stratified sample of 586 children with CP, 1 to 12 years of age, who reside in Ontario, Canada, and are known to rehabilitation centers participated. METHODS: Subjects were classified using the GMFCS, and gross motor function was measured with the Gross Motor Function Measure (GMFM). Four models were examined to construct curves that described the nonlinear relationship between age and gross motor function. RESULTS: The model in which both the limit parameter (maximum GMFM score) and the rate parameter (rate at which the maximum GMFM score is approached) vary for each GMFCS level explained 83% of the variation in GMFM scores. The predicted maximum GMFM scores differed among the 5 curves (level I=96.8, level II=89.3, level III=61.3, level IV=36.1, and level V=12.9). The rate at which children at level II approached their maximum GMFM score was slower than the rates for levels I and III. The correlation between GMFCS levels and GMFM scores was (.91. Logistic regression, used to estimate the probability that children with CP are able to achieve gross motor milestones based on their GMFM total scores, suggests that distinctions between GMFCS levels are clinically meaningful. CONCLUSION AND DISCUSSION: Classification of children with CP based on functional abilities and limitations is predictive of gross motor function, whereas age alone is a poor predictor. Evaluation of gross motor function of children with CP by comparison with children of the same age and GMFCS level has implications for decision making and interpretation of intervention outcomes.

Activities of Daily Living↗
PubMed1999

Differences in preferences for neonatal outcomes among health care professionals, parents, and adolescents.

CONTEXT: In neonatal intensive care, parents make important clinical management decisions in conjunction with health care professionals. Yet little information is available on whether preferences of health care professionals and parents for the resulting health outcomes differ. OBJECTIVE: To measure and compare preferences for selected health states from the perspectives of health care professionals (ie, neonatologists and neonatal nurses), parents of extremely low-birth-weight (ELBW) or normal birth-weight infants, and adolescents who were either ELBW or normal birth-weight infants. DESIGN: Cross-sectional cohort study. SETTING AND PARTICIPANTS: A total of 742 participants were recruited and interviewed between 1993 and 1995, including 100 neonatologists from hospitals throughout Canada; 103 neonatal nurses from 3 regional neonatal intensive care units; 264 adolescents (aged 12-16 years), including 140 who were ELBW infants and 124 sociodemographically matched term controls; and 275 parents of the recruited adolescents. MAIN OUTCOME MEASURE: Preferences (utilities) for 4 to 5 hypothetical health states of children were obtained by direct interviews using the standard gamble method. RESULTS: Overall, neonatologists and nurses had similar preferences for the 5 health states, and a similar proportion rated some health states as worse than death (59% of neonatologists and 68% of nurses; P=.20). Health care professionals rated the health states lower than did parents of ELBW and term infants (P<.001). Overall, 64% of health care professionals and 45% of parents rated 1 or more health states to be worse than death (P<.001). Differences in mean utility scores between health care professionals and parents and adolescent respondents were most pronounced for the 2 most severely disabled health states (P<.001). CONCLUSIONS: When asked to rate the health-related quality of life for the hypothetical conditions of children, health care professionals tend to provide lower utility scores than do adolescents and their parents. These findings have implications for decision making in the neonatal intensive care unit.

Adolescent↗
PubMed1997

Development of a health-related quality of life instrument for use in children with spina bifida.

The objective of this study was to develop a spina bifida health-related quality of life (HRQOL) instrument. Items were generated through semistructured interviews, and reduced by frequency-importance product ranking. Validity was assessed by correlating the HRQOL score with a global question concerning the child's well-being using the Spearman's rank coefficient, and the Piers-Harris Children's Self-Concept Scale (P-H) using the Pearson correlation coefficient. Reproducibility was assessed at 2-week intervals using the intra-class correlation coefficient (ICC). Field testing was undertaken in a larger sample to evaluate item-total correlation, internal consistency and construct validity. Patients taking part in the study were 329 children and adolescents with spina bifida attending two treatment centres. Over 600 items were generated. These were reduced to 47 questions and 50 questions, for children and adolescents respectively. The correlation between the HRQOL score and the global question was r = 0.57, and with the P-H was 0.26 (children). These values for adolescents were 0.63, and 0.89, respectively. Reproducibility was ICC = 0.78 (children) and 0.96 (adolescents). Following field testing, the questionnaire was further reduced to 44 questions (children) and 47 questions (adolescents) by eliminating questions with an item- total correlation less than 0.20. Cronbach's alphas for the final instrument were 0.93 (children) and 0.94 (adolescents), and construct validity correlations were 0.63 (children) and 0.37 (adolescents). The spina bifida HRQOL instrument has good measurement properties and may be used as a discriminative instrument. Assessment of responsiveness is necessary before using it to evaluate therapy in clinical trials.

Adolescent↗
PubMed1997

Evaluating family-centred service using a measure of parents' perceptions.

This article describes the use of a newly-developed measure of parents' perceptions of health care providers' behaviours (Measure of Processes of Care-MPOC) to evaluate the family centredness of children's rehabilitation services. The measure was developed with the participation of more than 1600 parents of children with chronic neurodevelopmental conditions throughout Ontario. It assesses five domains: enabling and partnership; providing general information; providing specific information about the child; coordinated and comprehensive care; and respectful and supportive care. By comparing the perceptions of parents receiving services from three different types of organizations or programmes, we demonstrated that the MPOC can pick up differences between parents in their experiences of caregiving. We also demonstrated that the MPOC is able to detect differences in how parents view the family-centredness of services provided by individual centres. The data indicate that the MPOC has appreciable utility in providing programmes and services with a description of their current level of family-centred service as perceived by parents. The strengths, limitations and potential uses of the measure in other contexts are discussed.

Adolescent↗
PubMed1996

How mothers and fathers view professional caregiving for children with disabilities.

The authors compared mothers' and fathers' perceptions of professional caregiving, using the MPOC, a self-administered questionnaire for parents. The authors looked at the aspects of caregiving 128 couples judged to be important, their perceptions of the actual caregiving received from health professionals and their stress. The data, from a relatively large sample of intact families, indicated that there were more similarities than differences between the mothers' and fathers' replies. Both valued the enabling and partnership aspect of caregiving most highly. Only one difference in reported experience was found: mothers reported experiencing significantly more coordinated and comprehensive care than did their spouses. The clinical implications of the findings are discussed, particularly with respect to the involvement of fathers in clinical intervention, and the belief that fathers are uninterested in their children's care.

Adolescent↗
PubMed1996

Parents' perceptions of caregiving: development and validation of a measure of processes.

The authors describe the development of a 56-item questionnaire, the Measure of Processes of Care (MPOC-56), designed to find out what parents of a child with a chronic health problem think of the services they and their child receive and of how those services affect psychosocial outcome. The instrument is internally consistent and is reliable on retests. Its validity was shown by positive correlations of its five scales with parents' satisfaction, and negative correlations with parents' stress in relation to services received. The MPOC-56 is a generic measure which can be used for clinical, quality assurance and research purposes.

Caregivers↗
PubMed1995

Reliability of the Gross Motor Performance Measure.

BACKGROUND AND PURPOSE: The reporting of reliability coefficients and the method of their determination is expected of test developers. The purpose of this study was to estimate the interrater, intrarater, and test-retest reliability of the Gross Motor Performance Measure, a measure of quality of movement designed to accompany the Gross Motor Function Measure. SUBJECTS: Subjects were 28 children (25 with cerebral palsy, 2 nondisabled, 1 with head injury) between the ages of 1 and 10 years. METHODS: Reliability data were obtained from assessments of 19 therapists. RESULTS: Intraclass correlation coefficients for reliability varied from .92 to .96 for the total scores and from .84 to .94 for the five attribute scores. CONCLUSION AND DISCUSSION: When the Gross Motor Performance Measure was administered by therapists who are familiar with the Gross Motor Function Measure and had a 1-day training workshop, reliability of the total scores was above recommended minimums. Scores of single attributes were less reproducible.

Cerebral Palsy↗
PubMed1995

The Gross Motor Performance Measure: validity and responsiveness of a measure of quality of movement.

BACKGROUND AND PURPOSE: This article presents the results of a study to validate a measure of gross motor performance for its capacity to detect changes in the quality of movement in children with cerebral palsy aged 0 to 12 years. SUBJECTS AND METHODS: On two occasions, 4 to 6 months apart, physical therapists from three children's treatment centers assessed 106 children with cerebral palsy, 18 children who had sustained an acute head injury, and 29 nondisabled children. Validity was demonstrated by comparing changes on the measure across diagnoses, severity, and age groups. RESULTS: Several a priori hypotheses were supported; however, relationships with parent and therapist ratings were not clearly demonstrated. CONCLUSION AND DISCUSSION: The measure was found to be differentially responsive to changes in "stable" and "responsive" groups.

Analysis of Variance↗
PubMed1994

Training users in the gross motor function measure: methodological and practical issues.

BACKGROUND AND PURPOSE: The Gross Motor Function Measure (GMFM) is a criterion-referenced observational measure for assessing change in gross motor function for children with cerebral palsy (CP). The purposes of this report are to present data on the effects of training pediatric developmental therapists to administer and score the GMFM and to discuss some practical and methodological issues associated with training. SUBJECTS AND METHODS: A weighted kappa estimate pretraining and posttraining workshop was used to determine participants' agreement of scoring a videotaped GMFM assessment against experts' scoring of the same videotaped assessment. Several children with CP, representing a spectrum of ages, severities, and levels of function, were shown on the videotape. RESULTS: There was a significant improvement in agreement from a mean kappa of .58 to .82 (t = 15.38, df = 75, P < .001) for the first group and from .81 to .92 (t = 10.91, df = 72, P < .001) for the second group following training. CONCLUSION AND DISCUSSION: Although there are a number of advantages to using videotapes to train test users and to assess scoring reliability, this method does not evaluate participants' ability to administer the measure. Further work is needed to determine whether reliability is maintained in a clinical situation in which it is necessary to both administer and score the GMFM.

Adolescent↗