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Peter Rosenbaum

Publications and source records attributed to Peter Rosenbaum.

At least 19 recordsLinked to original sources
PubMed2006

Classification of abnormal neurological outcome.

When we engage in the systematic follow-up of high-risk neonates it is important to avoid the temptation to assume that any variations in development in this population reflect 'abnormality.' In this chapter I first present some personal reflections and hobby horses to argue that we need to be aware of our possible biases toward interpreting developmental or functional differences in infants as evidence of developmental pathology. Second, I stress the challenges associated with making early 'diagnoses' of developmental disabilities. Instead I suggest that identification of differences and variations in development should be interpreted cautiously, taking account of natural variations in early development and the chance to observe children over time rather than needing to make a decision on the basis of a single assessment. Finally, I discuss cerebral palsy and illustrate the arguments I have presented with discussion of current thinking about diagnosis and classification of CP.

Cerebral Palsy↗
PubMed2006

Patterns of participation in recreational and leisure activities among children with complex physical disabilities.

Children with physical disabilities are at increased risk of limitations to participation in everyday activities. This study describes research examining the participation of children in day-to-day formal and informal activities (excluding mandated academic schooling). Using the Children's Assessment of Participation and Enjoyment (CAPE) measure, data on participation patterns were collected from 427 children (229 males, 198 females; mean age 10 y [SD 2 y 4 mo]; range 6-14 y) with physical limitations and from their families. The primary types of physical disability in the sample included cerebral palsy, spina bifida, acquired brain injury, and musculoskeletal limitations. Findings indicate a broad range of diversity and intensity of participation, with proportionately greater involvement in informal rather than formal activities. Significant differences in participation and enjoyment were found between males and females, and for children more than 12 years of age. Children's participation was less diverse in families reporting lower income, single-parent status, and lower respondent parent education. These findings provide a foundation for an improved understanding of the participation of children with physical disabilities, which can assist families and service providers in planning activities that fit with their child's preferences and ensure active participation.

Adolescent↗
PubMed2006

The Manual Ability Classification System (MACS) for children with cerebral palsy: scale development and evidence of validity and reliability.

The Manual Ability Classification System (MACS) has been developed to classify how children with cerebral palsy (CP) use their hands when handling objects in daily activities. The classification is designed to reflect the child's typical manual performance, not the child's maximal capacity. It classifies the collaborative use of both hands together. Validation was based on the experience within an expert group, a review of the literature, and thorough analysis of children across a spectrum of function. Discussions continued until consensus was reached, first about the constructs, then about the content of the five levels. Parents and therapists were interviewed about the content and the description of levels. Reliability was tested between pairs of therapists for 168 children (70 females, 98 males; with hemiplegia [n=52], diplegia [n=70], tetraplegia [n=19], ataxia [n=6], dyskinesia [n=19], and unspecified CP [n=2]) between 4 and 18 years and between 25 parents and their children's therapists. The results demonstrated that MACS has good validity and reliability. The intraclass correlation coefficient between therapists was 0.97 (95% confidence interval 0.96-0.98), and between parents and therapist was 0.96 (0.89-0.98), indicating excellent agreement.

Activities of Daily Living↗
PubMed2006

Gross Motor Function Classification System used in adults with cerebral palsy: agreement of self-reported versus professional rating.

The present study investigated the reliability of self-reported rating of Gross Motor Function Classification System (GMFCS) levels compared with professional rating, and changes in gross motor function over time, in adults with cerebral palsy. Twenty-nine females and 33 males aged between 18 years 5 months and 62 years 11 months (mean age 34y 7mo [SD 10y 6mo]) participated in the study. Participants rated their current gross motor function using the GMFCS and reported their judgement of their gross motor function at age 10 to 12 years. The project leader, a physical therapist, also classified participants' current GMFCS levels and conducted a chart review on all accessible medical records of participants' gross motor function when they were 10 to 12 years old, rating the GMFCS level accordingly. Intraclass correlation coefficients (ICC) between self-reported and professional ratings showed excellent agreement (ICC=0.93-0.95, 95% confidence interval [CI] 0.89-0.97). More than half the participants experienced a stable gross motor function from the age of 10 to 12 years to the present. Those at GMFCS Levels II and III at the age of 10 to 12 years (according to the professional rating) had significant change for the worse in gross motor function over time, with odds ratios of 9.30 (95% CI 1.2-73.0, p=0.03) and 7.00 (95% CI 1.1-43.0, p=0.04) respectively. Interview data on circumstances regarding changes in gross motor function since childhood are also reported. Changes in GMFCS level were mostly associated with physical or social environmental factors.

Adolescent↗
PubMed2006

Growth and health in children with moderate-to-severe cerebral palsy.

BACKGROUND: Children with cerebral palsy frequently grow poorly. The purpose of this study was to describe observed growth patterns and their relationship to health and social participation in a representative sample of children with moderate-severe cerebral palsy. METHODS: In a 6-site, multicentered, region-based cross-sectional study, multiple sources were used to identify children with moderate or severe cerebral palsy. There were 273 children enrolled, 58% male, 71% white, with Gross Motor Function Classification System levels III (22%), IV (25%), or V (53%). Anthropometric measures included: weight, knee height, upper arm length, midupper arm muscle area, triceps skinfold, and subscapular skinfold. Intraobserver and interobserver reliability was established. Health care use (days in bed, days in hospital, and visits to doctor or emergency department) and social participation (days missed of school or of usual activities for child and family) over the preceding 4 weeks were measured by questionnaire. Growth curves were developed and z scores calculated for each of the 6 measures. Cluster analysis methodology was then used to create 3 distinct groups of subjects based on average z scores across the 6 measures chosen to provide an overview of growth. RESULTS: Gender-specific growth curves with 10th, 25th, 50th, 75th, and 90th percentiles for each of the 6 measurements were created. Cluster analyses identified 3 clusters of subjects based on their average z scores for these measures. The subjects with the best growth had fewest days of health care use and fewest days of social participation missed, and the subjects with the worst growth had the most days of health care use and most days of participation missed. CONCLUSIONS: Growth patterns in children with cerebral palsy were associated with their overall health and social participation. The role of these cerebral palsy-specific growth curves in clinical decision-making will require further study.

Adolescent↗
PubMed2005

Effective rehabilitation for children and adolescents with brain injury: evaluating and disseminating the evidence.

OBJECTIVE: To develop and evaluate literature reviews of the effectiveness of rehabilitation interventions for children with brain injury. DESIGN: We wrote 6 research summaries, which were evaluated by study participants. SETTING: Community. PARTICIPANTS: A convenience sample that included 18 parents of children with brain injury, 18 service providers, and 12 insurance industry representatives. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Questionnaire designed for the evaluation of printed material. RESULTS: Few articles were found that focused on evaluation of rehabilitation interventions for children with brain injury. Study participants were representative of a broad range of educational and professional backgrounds. Before reading the research summaries, service providers reported greater familiarity with the topics than did parents and insurance representatives. Despite this finding, there were no significant between-group differences in the format, content, and impact ratings provided by the 3 participant groups. CONCLUSIONS: Research summaries written in a clear, straightforward manner are appropriate for people with different educational and professional backgrounds. Further research into the effectiveness of rehabilitation interventions is needed to support informed decision-making that results in the best outcomes for children with brain injury.

Adolescent↗
PubMed2005

Proposed definition and classification of cerebral palsy, April 2005.

Because of the availability of new knowledge about the neurobiology of developmental brain injury, information that epidemiology and modern brain imaging is providing, the availability of more precise measuring instruments of patient performance, and the increase in studies evaluating the efficacy of therapy for the consequences of injury, the need for reconsideration of the definition and classification of cerebral palsy (CP) has become evident. Pertinent material was reviewed at an international symposium participated in by selected leaders in the preclinical and clinical sciences. Suggestions were made about the content of a revised definition and classification of CP that would meet the needs of clinicians, investigators, and health officials, and provide a common language for improved communication. With leadership and direction from an Executive Committee, panels utilized this information and have generated a revised Definition and Classification of Cerebral Palsy. The Executive Committee presents this revision and welcomes substantive comments about it.

Cerebral Palsy↗
PubMed2005

Relationship between cytokine concentration in serum and preovulatory follicular fluid and in vitro fertilization/intracytoplasmic sperm injection outcome.

Differences in follicle cell function and follicular fluid biochemistry have been suggested to influence the developmental potential of human oocytes at both cellular and chromosomal levels. Follicular fluids provide the environment in which oocyte maturation occurs. Therefore, follicular fluids may affect fertilization and early embryonic development. In humans, it has been shown that follicular fluid exerts chemotactic activity towards neutrophilic granulocytes and that the concentrations of this activity are related to the outcome of in vitro fertilization (IVF) treatment. The present study focuses on growth and cytokine presence in serum and follicular fluid of patients of reproductive age and their role in ovarian follicles, fertilization, embryo development, and implantation and to find out which growth factor could be a useful predictive parameter of IVF/intracytoplasmic sperm injection outcome.

Animals↗
PubMed2005

The health and well-being of caregivers of children with cerebral palsy.

OBJECTIVE: Most children enjoy healthy childhoods with little need for specialized health care services. However, some children experience difficulties in early childhood and require access to and utilization of considerable health care resources over time. Although impaired motor function is the hallmark of the cerebral palsy (CP) syndromes, many children with this development disorder also experience sensory, communicative, and intellectual impairments and may have complex limitations in self-care functions. Although caregiving is a normal part of being the parent of a young child, this role takes on an entirely different significance when a child experiences functional limitations and possible long-term dependence. One of the main challenges for parents is to manage their child's chronic health problems effectively and juggle this role with the requirements of everyday living. Consequently, the task of caring for a child with complex disabilities at home might be somewhat daunting for caregivers. The provision of such care may prove detrimental to both the physical health and the psychological well-being of parents of children with chronic disabilities. It is not fully understood why some caregivers cope well and others do not. The approach of estimating the "independent" or "direct" effects of the care recipient's disability on the caregiver's health is of limited value because (1) single-factor changes are rare outside the context of constrained experimental situations; (2) assumptions of additive relationships and perfect measurements rarely hold; and (3) such approaches do not provide a complete perspective, because they fail to examine indirect pathways that occur between predictor variables and health outcomes. A more detailed analytical approach is needed to understand both direct and indirect effects simultaneously. The primary objective of the current study was to examine, within a single theory-based multidimensional model, the determinants of physical and psychological health of adult caregivers of children with CP. METHODS: We developed a stress process model and applied structural equation modeling with data from a large cohort of caregivers of children with CP. This design allowed the examination of the direct and indirect relationships between a child's health, behavior and functional status, caregiver characteristics, social supports, and family functioning and the outcomes of caregivers' physical and psychological health. Families (n = 468) of children with CP were recruited from 19 regional children's rehabilitation centers that provide outpatient disability management and supports in Ontario, Canada. The current study drew on a population available to the investigators from a previous study, the Ontario Motor Growth study, which explored patterns of gross motor development in children with CP. Data on demographic variables and caregivers' physical and psychological health were assessed using standardized, self-completed parent questionnaires as well as a face-to-face home interview. Structural equation modeling was used to test specific hypotheses outlined in our conceptual model. This analytic approach involved a 2-step process. In the first step, observed variables that were hypothesized to measure the underlying constructs were tested using confirmatory factor analysis; this step led to the so-called measurement model. The second step tested hypotheses about relationships among the variables in the structural model. All of the hypothesized paths in the conceptual model were tested and included in the structural model. However, only paths that were significant were shown in the final results. The direct, indirect, and total effects of theoretical constructs on physical and psychological health were calculated using the structural model. RESULTS: The most important predictors of caregivers' well-being were child behavior, caregiving demands, and family function. A higher level of behavior problems was associated with lower levels of both psychological (beta = -.22) and physical health (beta = -.18) of the caregivers, whereas fewer child behavior problems were associated with higher self-perception (beta = -.37) and a greater ability to manage stress (beta = -.18). Less caregiving demands were associated with better physical (beta = .23) and psychological (beta = .12) well-being of caregivers, respectively. Similarly, higher reported family functioning was associated with better psychological health (beta = .33) and physical health (beta = .33). Self-perception and stress management were significant direct predictors of caregivers' psychological health but did not directly influence their physical well-being. Caregivers' higher self-esteem and sense of mastery over the caregiving situation predicted better psychological health (beta = .23). The use of more stress management strategies was also associated with better psychological health of caregivers (beta = .11). Gross income (beta = .08) and social support (beta = .06) had indirect overall effects only on psychological health outcome, whereas self-perception (beta = .22), stress management (beta = .09), gross income (beta = .07), and social support (beta = .06) had indirect total effects only on physical health outcomes. CONCLUSIONS: The psychological and physical health of caregivers, who in this study were primarily mothers, was strongly influenced by child behavior and caregiving demands. Child behavior problems were an important predictor of caregiver psychological well-being, both directly and indirectly, through their effect on self-perception and family function. Caregiving demands contributed directly to both the psychological and the physical health of the caregivers. The practical day-to-day needs of the child created challenges for parents. The influence of social support provided by extended family, friends, and neighbors on health outcomes was secondary to that of the immediate family working closely together. Family function affected health directly and also mediated the effects of self-perception, social support, and stress management. In families of children with CP, strategies for optimizing caregiver physical and psychological health include supports for behavioral management and daily functional activities as well as stress management and self-efficacy techniques. These data support clinical pathways that require biopsychosocial frameworks that are family centered, not simply technical and short-term rehabilitation interventions that are focused primarily on the child. In terms of prevention, providing parents with cognitive and behavioral strategies to manage their child's behaviors may have the potential to change caregiver health outcomes. This model also needs to be examined with caregivers of children with other disabilities.

Adaptation, Psychological↗
PubMed2004

Caregiving process and caregiver burden: conceptual models to guide research and practice.

BACKGROUND: Parental care for a child with a developmental disability is an enormous responsibility, one that can far exceed that of typical parental care. While most parents adapt well to the situation of caring for a child with a disability, some do not. To understand parents' adaptations to their children's disabilities, the complex nature of stress processes must be accounted for and the constructs and factors that play a role in the caregiving must be considered. DISCUSSION: Evidence suggests that there is considerable variation in how caregivers adapt to their caregiving demands. Many studies have sought to qualify the association between caregiving and health outcomes of the caregivers. Contextual factors such as SES, child factors such as child behaviour problems and severity of disability, intra-psychic factors such as mastery and self-esteem, coping strategies and social supports have all been associated with psychological and/or physical outcome or parents or primary caregivers. In reviewing these issues, the literature appears to be limited by the use of traditional analytic approaches which examine the relationship between a factor and an outcome. It is clear, however, that changes to single factors, as represented in these studies, occur very rarely even in the experimental context. The literature has also been limited by lack of reliance on specific theoretical frameworks. SUMMARY: This conceptual paper documents the state of current knowledge and explores the current theoretical frameworks that have been used to describe the caregiving process from two diverse fields, pediatrics and geriatrics. Integration of these models into one comprehensive model suitable for this population of children with disabilities and their caregivers is proposed. This model may guide future research in this area.

Adaptation, Psychological↗
PubMed2004

The World Health Organization International Classification of Functioning, Disability, and Health: a model to guide clinical thinking, practice and research in the field of cerebral palsy.

The way we think about health and disease determines to a considerable extent what we do and say in our clinical encounters with patients. The recent publication and promotion of the World Health Organization's International Classification of Function, Health, and Disability (known as the ICF) represents an exciting new way to consider health and disease. In the context of children and youth with cerebral palsy, this model offers many heretofore ignored "point of entry" for counselling and intervention with these conditions. This model also provides many possibilities to explore research questions with a fresh approach. This article outlines the ICF model and discusses these opportunities.

Activities of Daily Living↗
PubMed2004

Family-centered service for children with cerebral palsy and their families: a review of the literature.

Pediatric neurologists and other specialists working with children with cerebral palsy or other disabilities play important roles in providing services in ways that make a difference in the lives of these children and their families. This article defines family-centered service and outlines a conceptual framework of the premises and principles underlying this approach to service delivery. Research evidence supporting family-centered service is presented for child, parent/family and service system outcomes, with a focus on community-based rehabilitation or health care services. The research evidence shows strong support for family-centered service in promoting the psychosocial well-being of children and their parents and in leading to increased satisfaction with services. There is less evidence for other outcomes. It is recommended that all service providers assess their beliefs and behaviors about family-centered service.

Caregivers↗
PubMed2004

Relationship between cytokine concentrations (FGF, sICAM-1 and SCF) in serum, follicular fluid and ICSI outcome.

OBJECTIVE: The aim of this study was (i) to investigate the existence of fibroblast growth factor (FGF), soluble intracellular adhesion molecule-1 (sICAM-1), and stem cell factor (SCF) in serum and human follicular fluid (FF) of intracytoplasmic sperm injection (ICSI) patients, and (ii) to determine the relationship between these parameters and ICSI outcome. MATERIAL AND METHOD: Seventy-five patients undergoing controlled ovarian hyperstimulation with human menopausal gonadotropin (hMG) after down-regulation with GnRHa were included in this study. The concentrations of FGF, SCF, and sICAM-1 were measured by using commercially available enzyme-linked immunosorbent assay test kits. RESULTS: The FGF, sICAM-1, and SCF concentrations in the serum of women who become pregnant (group I) were 8.5 +/- 1.5 pg/mL, 235.8 +/- 81.1 ng/mL, and 597.7 +/- 139.9 pg/mL, and the corresponding concentrations of women who did not (group II) were 6.4 +/- 3.6 pg/mL, 230.6 +/- 66.5 ng/mL, and 569.6 +/- 91.4 pg/mL respectively. No significant difference was observed between the two investigated groups with regard to the number of hMG ampoules administered for controlled ovarian hyperstimulation, estradiol concentration on the day of human chorionic gonadotropin (hCG) injection, number of retrieved oocytes and fertilization rate. CONCLUSION: The concentration of FGF, sICAM-1, and SCF did not differ significantly between the two groups in serum or in FF. Besides, the ICSI outcome was not related to their concentrations in serum or FF. Therefore, these parameters could not be used as a prognostic factor in ICSI program.

Adult↗
PubMed2004

Changes in mobility of children with cerebral palsy over time and across environmental settings.

This study examined changes in mobility methods of children with cerebral palsy (CP) over time and across environmental settings. Sixty-two children with CP, ages 6-14 years and classified as levels II-IV on the Gross Motor Function Classification System, were randomly selected from a larger data base and followed for three to four years. On each of several assessments, parents completed a questionnaire on their child's usual mobility methods in the home, school, and outdoors/community settings. During the first assessment interval, mobility methods increased to methods requiring more gross motor control. During the second assessment interval, mobility methods were unchanged or decreased to methods requiring less gross motor control. Changes within the child and within the environment are hypothesized to occur and to impact changes in mobility methods. Screening at regular intervals is recommended to monitor changes in mobility. Interventions to enhance mobility may be indicated during periods of change in the child or exposure to new environments.

Adolescent↗
PubMed2004

The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers?

BACKGROUND: Caring for any child involves considerable resources, but the demands for these resources are often increased when caring for a child with a disability. These demands have implications for the psychologic and physical health of the caregiver (CG). Although a number of recent trends in health care stress the importance of studying and promoting the health of CGs of children with disabilities, the literature in this area exhibits 2 major weaknesses, ie, most studies draw conclusions from relatively small, potentially biased, clinic-based samples and the majority of work has focused on the psychologic health of CGs, whereas little research has been undertaken to study their physical well-being. The goal of this study was to compare the physical and psychologic health of CGs of children with cerebral palsy (CP) with that of the general population of CGs. METHODS: Data on the physical and psychologic health of 468 primary CGs of children with CP, drawn from 18 of 19 publicly funded children's rehabilitation centers in Ontario, Canada, were collected with a self-completed questionnaire and a face-to-face interview. Identical items and scales had been administered previously to nationally representative samples of the Canadian population in 2 large-scale Canadian surveys, ie, the National Population Health Survey (NPHS) and the National Longitudinal Study of Children and Youth (NLSCY). Subsamples of those data, restricted to adult residents of the province of Ontario who were parents, allowed a comparison of our sample of CGs of children with CP with parent samples from both the NLSCY (n = 2414) and the NPHS (n = 5549). OUTCOME MEASURES: Demographic variables included CG age, gender, education, income, and work-related variables. Psychologic health and support variables included social support, family functioning, frequency of contacts, distress, and emotional and cognitive problems. Physical health variables included the number and variety of chronic conditions, vision, hearing, and mobility problems, and experience of pain. RESULTS: CGs of children with CP had lower incomes than did the general population of CGs (proportion with income over 60,000 dollars: CG: 40.9%; NLSCY: 51.4%), despite the absence of any important differences in education between the 2 samples. Results showed that CGs of children with CP were less likely to report working for pay (CG: 66%; NLSCY: 81.2%), less likely to be engaged in full-time work (CG: 67.5%; NLSCY: 73.2%), and more likely to list caring for their families as their main activity (CG: 37.2%; NLSCY: 28.4%). Measures of support showed no difference in reported social support (CG: mean score: 14.5; SD: 3.4; NLSCY: mean score: 14.3; SD: 2.7) or family functioning (CG: mean score: 8.6; SD: 5.6; NLSCY: mean score: 9.0; SD: 4.9) between the 2 samples, although the CG sample did report a statistically greater number of support contacts (CG: mean score: 4.5; SD: 0.7; NPHS: mean score: 4.2; SD: 0.9). Measures of psychologic health showed greater reported distress (CG: mean score: 4.7; SD: 4.4; NPHS: mean score: 2.2; SD: 2.7), chronicity of distress (CG: mean score: 5.5; SD: 1.4; NPHS: mean score: 5.2; SD: 1.1), emotional problems (CG: 25.3% indicating problems; NPHS: 13.7%), and cognitive problems (CG: 38.8%; NPHS: 14.3%) among CGs of children with CP. They also reported a greater likelihood of a variety of physical problems, including back problems (CG: 35.5% reporting the condition; SE: 2.2%; NLSCY: 12.2%; SE: 0.7%), migraine headaches (CG: 24.2%; SE: 2.0%; NLSCY: 11.2%; SE: 0.7%), stomach/intestinal ulcers (CG: 8.4%; SE: 1.3%; NLSCY: 1.7%; SE: 0.3%), asthma (CG: 15.8%; SE: 1.7%; NLSCY: 6.3%; SE: 0.5%), arthritis/rheumatism (CG: 17.3%; SE: 1.8%; NLSCY: 7.3%; SE: 0.5%), and experience of pain (CG: 28.8%; SE: 2.1%; NPHS: 11.0%; SE: 0.5), as well as a greater overall number of chronic physical conditions (CG: 24.1% reporting no chronic conditions; NLSCY: 55.2%). CONCLUSIONS: Although many families cope well despite the added challenges of caring for a child with a disability, our findings suggest that the demands of their children's disabilities can explain differences in the health status of parents and that parents of children with CP are more likely to have a variety of physical and psychologic health problems. Many of these findings are consistent with a stress process model, in which stress from caregiving can directly or indirectly affect a variety of measures of health, although some of the findings (asthma and arthritis) seem to strain this hypothesis. Alternate interpretations of these findings include the possibility that parents who are in regular contact with the health care system may have more opportunities to discuss and receive attention for their own health concerns than do comparison adults or that the greater number of health issues reported by CGs is related to the nature of our study, perhaps leading these parents to focus on their health and well-being in more depth than is usually feasible in a population survey. CGs of children with CP also had lower incomes, despite the absence of any important differences in education. The findings are consistent with the idea that the financial burden of caring for a child with a disability results in part from a reduced availability of these parents to work for pay. IMPLICATIONS FOR SERVICE PROVIDERS: Physicians and other health care professionals should be aware of the important relationship between child disability and CG health. Family-centered policies and services that explicitly consider CG health are likely to benefit the well-being of both CGs and their families. Future work should address the extent to which the family-centeredness of services, as experienced by CGs, is associated with better health outcomes for parents and their families.

Adult↗