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Biomedical subjects

Peter Rosenbaum

Publications and source records attributed to Peter Rosenbaum.

30 records · Page 2Linked to original sources

Health-related quality of life in childhood epilepsy: moving beyond 'seizure control with minimal adverse effects'.

Childhood epilepsy is one of the most important and prevalent neurological conditions in the developing years. Persons with childhood onset epilepsy are at a high risk for poor psychosocial outcomes, even without experiencing co-morbidities. The goal of management of children with epilepsy should be to enable the child and the family to lead a life as free as possible from the medical and psychosocial complications of epilepsy. This comprehensive care needs to go beyond simply trying to control seizures with minimal adverse drug reactions. Seizure frequency and severity is only one important outcome variable. Other factors such as social, psychological, behavioural, educational, and cultural dimensions of their lives affect children with epilepsy, their families and their close social networks. A number of epilepsy-specific health-related quality of life (HRQL) scales for children have been developed with the aim to include and measure accurately the impact and burden of epilepsy. Their target populations, details of the origin of the items, and psychometric properties vary significantly. Their strengths and weaknesses will be identified more clearly through their continued use in the clinical setting and in research studies. Only a few studies to date have utilized these or generic HRQL measures to assess the HRQL of specific populations with epilepsy. Future research needs to develop theory driven models of HRQL and identify measurable factors that have important correlations with outcomes. Since biomedical variables like seizure frequency and severity have only moderate correlations with HRQL, other independent factors including the child's resilience, co-morbid conditions, parental well-being, family factors and societal/cultural variables may play a major role. We also need to learn what encompasses comprehensive patient care, define the goals of management and evaluate the impact of different interventions. Future studies need to include the children's own perspectives of their HRQL in addition to parental reports. Finally, clinicians need to familiarize themselves with outcome measures, be able to evaluate them, and use them routinely in their day-to-day practice.

Child↗

Reliability of classification of cerebral palsy in low-birthweight children in four countries.

The reliability of classification of cerebral palsy (CP) in low-birthweight children was assessed by using clinical and research study records sampled from population-based cohort studies in the USA, The Netherlands, Canada, and Germany. Records of neurological examination findings and functional motor assessments were submitted to up to five pediatricians with expertise in CP diagnosis, who grouped children into categories referred to as 'disabling' CP, 'non-disabling' CP, and no CP. Each study provided between 31 and 51 records of children assessed between 2 and 8 years of age, approximately equally divided among the three groupings. The discrimination between 'any CP' and 'no CP' was only fair (mean Kappa coefficients 0.37 to 0.69). However, when more detailed information describing motor function was used, children with 'disabling' CP could be distinguished, on the basis of records, from those without CP or with 'non-disabling' CP with good to excellent reliability (mean Kappa coefficients 0.69 to 0.88). Because of the substantially higher agreement observed when these functional distinctions are made, we recommend that reports or comparisons of rates of CP should include levels of motor function of children with CP, and not simply total CP, among the outcomes of interest.

Canada↗

Health-related quality of life in children with epilepsy: development and validation of self-report and parent proxy measures.

PURPOSE: To answer a need to include and measure accurately the impact and burden of epilepsy as outcomes of interventions with affected children, we developed and validated self-report and parent-proxy respondent health-related quality of life (HRQL) instruments for preadolescent children with epilepsy. METHODS: We combined qualitative and quantitative research methods. Items were extracted from focus group discussions involving children with epilepsy and their parents. We created scales formatted with alternative paired options of forced responses and used factor analysis to generate relevant subscales and reduce the number of items. We checked internal consistency, assessed test-retest reliability 10-14 days apart, and documented construct validity. RESULTS: A sample of 381 children with epilepsy, age 6-15 years, and their parents independently completed a 67-item questionnaire, from which we chose five items for each subscale. The measures share four subscales, but each measure has an additional distinct subscale. The children and parents could discern differences and report differentially between the various aspects of the HRQL. Internal consistency measured with Cronbach's alpha was acceptable for all subscales; construct validity has been demonstrated from the testing of several hypotheses. Test-retest reliability examined with the intraclass correlation coefficient was satisfactory for the parents and for children age 8 years and older. The correlations between the mothers' and children's responses was poor to moderate. CONCLUSIONS: The data demonstrate sound psychometric properties for both related measures, which are easy to administer for children with epilepsy who are 8 years and older and their parents. The subscales encompass HRQL dimensions judged most important by children with epilepsy for the self-report measure and by parents for the proxy response measure. The parent-proxy measure should be useful as a complement to the child self-report measure in evaluating the validity of parental assessment of the child's health status; in longitudinal outcome research; and in HRQL assessment of children who are unable to respond independently.

Adolescent↗

Controversial treatment of spasticity: exploring alternative therapies for motor function in children with cerebral palsy.

The treatment and management of children with cerebral palsy is an ever-evolving story. In the past 20 years, a number of exciting innovations in treatment have expanded the opportunities to help children. At the same time, the field has experienced a remarkable proliferation of "alternative" therapies-approaches based on ideas about the biologic basis of neurodevelopmental disabilities and their management that differ considerably from conventional thinking in Western medicine. Professionals working with children with cerebral palsy and their families are frequently asked for an opinion about or even endorsement of these new and "promising" approaches to therapy. These can be very difficult to provide when the evidence is limited, peer-reviewed reports are scarce, and the primary source of information is the World Wide Web. The purposes of this article are to discuss briefly why it can be difficult to ascertain whether any treatment--conventional or alternative--does more harm than good, and to consider what rules of evidence can be applied to make a sound judgment about a new treatment. The article then discusses several current controversial alternative therapies, reviewing the available literature and offering a critical appraisal of each. Topics addressed include hyperbaric oxygen therapy, conductive education, the Adeli suit, and therapeutic (subthreshold) electrical stimulation because these approaches have been applied to children with cerebral palsy.

Cerebral Palsy↗

A conceptual model of the factors affecting the recreation and leisure participation of children with disabilities.

Participation in everyday activities is considered to be a vital part of children's development, which is related to their quality of life and future life outcomes. Research studies indicate that children with disabilities are at risk for lower participation in ordinary activities at home and in the community. This article presents a conceptual model of 11 environmental, family, and child factors that are thought to influence children's participation in recreation and leisure activities. The article outlines the existing evidence for the influence of these factors on one another and on children's participation. The review encompasses four bodies of literature: the participation of children or adults with disabilities, the risk and resilience of children facing adversity, the determinants of leisure and recreation activities, and the factors influencing physical activity and exercise. The proposed model is expected to be a useful tool for guiding future research studies and for developing policies and programs for children with disabilities and their families.

Child↗

Feeding dysfunction is associated with poor growth and health status in children with cerebral palsy.

OBJECTIVE: To describe parent-reported feeding dysfunction and its association with health and nutritional status in children with cerebral palsy. DESIGN: Anthropometry was measured and z scores calculated. The Child Health Questionnaire was used to assess health status, and a categorical scale (none to severe) was used to classify subjects according to severity of feeding dysfunction. SUBJECTS: 230 children (9.7+/-4.6 years; 59% boys) with moderate to severe cerebral palsy were recruited from 6 centers in the United States and Canada. STATISTICAL ANALYSES: Descriptive statistics, the Kruskal-Wallis and Pearson chi2 tests. RESULTS: Severity of feeding dysfunction was strongly associated with indicators of poor health and nutritional status. The mean weight z scores were -1.7, -2.5, -3.3, and -1.8 among children with none, mild, moderate, or severe (largely tube-fed) feeding dysfunction, respectively (P= .003). Similar results were observed for height z score (P=.008), triceps z score (P=.03), and poor Global Health score (part of the Child Health Questionnaire) (P<.001). Subjects who were tube fed were taller (P=.014) and had greater body fat stores (triceps z score, P=.001) than orally fed subjects with similar motor impairment. For subjects exclusively fed by mouth, a dose-response relationship was observed between feeding dysfunction severity and poor nutritional status. Subjects with only mild feeding dysfunction had reduced triceps z score (-0.9) compared with those with no feeding problems (-0.3). CONCLUSION: For children with moderate to severe cerebral palsy, feeding dysfunction is a common problem associated with poor health and nutritional status. Even children with only mild feeding dysfunction, requiring chopped or mashed foods, may be at risk for poor nutritional status. Parental report of feeding dysfunction with a structured questionnaire may be useful in screening children for nutritional risk.

Adolescent↗

Selective dorsal rhizotomy: meta-analysis of three randomized controlled trials.

This study is a comparative analysis and meta-analysis of three randomized clinical trials. Children with spastic diplegia received either 'selective' dorsal rhizotomy (SDR) plus physiotherapy (SDR+PT) or PT without SDR (PT-only). Common outcome measures were used for spasticity (Ashworth scale) and function (Gross Motor Function Measure [GMFM]). Baseline and 9- to 12-month outcome data were pooled (n=90). At baseline, 82 children were under 8 years old and 65 had Gross Motor Function Classification System level II or III disability. Pooled Ashworth data analysis confirmed a reduction of spasticity with SDR+PT (mean change score difference -1.2; Wilcoxonp<0.001). Pooled GMFM data revealed greater functional improvement with SDR+PT (difference in change score +4.0, p=0.008). Multivariate analysis in the SDR+PT group revealed a direct relationship between percentage of dorsal root tissue transected and functional improvement. SDR+PT is efficacious in reducing spasticity in children with spastic diplegia and has a small positive effect on gross motor function.

Cerebral Palsy↗

Health status of school-aged children with cerebral palsy: information from a population-based sample.

In this study parents' systematic accounts of the health status of 408 school-aged children with cerebral palsy (CP) are reported (221 males, 187 females; mean age 8 years 5 months, SD 1 year 11 months; range 5 to 13 years), as are relations between severity of functional motor impairment and eight functional health status domains. Data were collected as part of a longitudinal study of the motor development of a population-based, stratified, random sample of children with CP from across Ontario, Canada. The Gross Motor Function Classification System (GMFCS) was used to classify severity of CP and functional health status was described with the eight-level Health Utilities Index-Mark 3. Rates of functional limitations in Mobility, Dexterity, Speech, and Vision were statistically significantly associated with GMFCS levels (all p<0.01), with correlation values (tau-b) of 0.82, 0.58, 0.46, and 0.36, respectively. Functional limitations in hearing (tau-b=0.16; p=0.04) and cognition (tau-b=0.27; p<0.01) were both statistically significantly associated with GMFCS levels, though correlations were low. Neither emotion (tau-b=0.03; p=0.24) nor pain (tau-b=0.07; p=0.37) was associated with degree of functional limitation as described by the GMFCS. Clinical and epidemiological implications of findings are discussed.

Activities of Daily Living↗

Immunoglobulins and cytokines level in follicular fluid in relation to etiology of infertility and their relevance to IVF outcome.

OBJECTIVE: The aims of the present study were to (i) determine the presence and concentration of albumin fractions (alpha1, alpha2, beta, gamma), immunoglobulins (IgA, IgG, IgM) and cytokines [interleukin (IL)-6, IL-8, granulocyte-macrophage colony-stimulating factor (GM-CSF)] in periovulatory ovarian follicular fluid (FF) of in vitro fertilization (IVF) patients, (ii) examine the relationship between these parameters and the etiology of infertility as well as the IVF outcome and (iii) find out if these parameters in FF could be used as a predictive factor of IVF outcome. DESIGN: The levels of albumin fractions, immunoglobulin and cytokines were measured from women who underwent IVF therapy for various indications and the results were compared between the patient groups and IVF outcome. MATERIALS AND METHODS: Follicular fluid was obtained from 160 IVF patients. A total of 79 patients underwent controlled ovarian hyperstimulations (COH) either with follicle-stimulating hormone (FSH) or HMG. Whereas, the HMG was used for the second set of patients (n=81) - after down regulation with gondotropin-releasing hormone agonists (Gn-RHa) - the protein fractions were determined using electrophoresis separation. Immunoglobulins were measured using a commercial kits and the concentration of cytokines was determined by the highly sensitive enzyme-linked immunosorbent assay (ELISA) methods. RESULTS: The stimulation regimens used have no effect on albumin (alpha1, alpha2, beta, gamma) and immunoglobulin (IgA, IgG, IgM) concentrations, as no significant difference was observed between the two groups. Besides, no specific relationship was found between the concentration of these investigated parameter in FF and etiology of infertility or fertilization, cleavage and pregnancy rate. Besides, there were no significant differences between the groups for any cytokine investigated. Moreover, there were no correlations between the concentration of IL-6, IL-8 and GM-CSF in FF and steroid hormone concentration in the blood at the day of oocytes retrieval or IVF outcome. IN CONCLUSION: Total protein, albumin fraction, immunoglobulins and cytokines level in FF of patients undergoing COH for IVF therapy for various etiology of infertility could not be a useful parameter for predicting IVF outcome.

Adult↗

Relationship of nutritional status to health and societal participation in children with cerebral palsy.

OBJECTIVES: To describe nutritional status in a population-based sample of children with moderate or severe cerebral palsy (CP) and to explore the relationships between nutritional status and health and functional outcomes. STUDY DESIGN: A population-based strategy was used to enroll children with CP at 6 geographic sites. Research assistants performed anthropometric assessment, determined severity of motor impairment, and interviewed caregivers with the Child Health Questionnaire and a questionnaire designed specifically for this study. Anthropometric measures were converted to Z scores and the relationship between health and nutritional status was assessed using regression models. RESULTS: Among the 235 participants, indicators of malnutrition were common. Poor nutritional status correlated with increased health care utilization (hospitalizations, doctor visits) and decreased participation in usual activities by the child and parent. CONCLUSIONS: Malnutrition is common in children with moderate or severe CP and associated with poorer health status and limitations in societal participation. Further studies are needed to determine the nature of these associations and how to manage nutrition in children with CP to optimize growth and health outcomes.

Absenteeism↗

From research to clinical practice: considerations in moving research into people's hands. Personal reflections that may be useful to others.

It may take many years for published clinical research findings to be found, understood, adopted and applied in practice. In recognition of this delay, many jurisdictions and agencies are now promoting a stronger link between research and its dissemination in useable forms that will enable practitioners to access, understand and use new ideas. The purpose of this paper, first presented as a keynote address at the 15th Annual Meeting of the European Academy of Childhood Disability in Oslo in October 2003, is to share experiences of the author and his colleagues at a childhood disability system-linked research centre in Ontario, Canada. The lessons learned include the value of striving to describe one's findings in plain language; writing study reports for parents and children who are involved in research studies; using multiple methods to disseminate one's work; and making explicit the potential importance and applicability of the findings to readers of the work. Engaging end users at many stages of the development and field testing of one's work will enhance buy-in and lend added credibility to the work, as well as influencing content and process as the research unfolds. The result is likely to be greater recognition of 'familiar' aspects of the research and the adoption of relevant findings.

Diffusion of Innovation↗