Maureen O'Donnell

Health status of children with moderate to severe cerebral palsy

The aim of the study was to evaluate the health of children with cerebral palsy (CP) using a global assessment of quality of life, condition-specific measures, and assessments of health care use. A multicenter population-based cross-sectional survey of 235 children, aged 2 to 18 years, with moderate to severe impairment, was carried out using Gross Motor Function Classification System (GMFCS) levels III (n = 56), IV (n = 55), and V (n = 122). This study group scored significantly below the mean on the Child Health Questionnaire (CHQ) for Pain, General Health, Physical Functioning, and Impact on Parents. These children used more medications than children without CP from a national sample. Fifty-nine children used feeding tubes. Children in GMFCS level V who used a feeding tube had the lowest estimate of mental age, required the most health care resources, used the most medications, had the most respiratory problems, and had the lowest Global Health scores. Children with the most severe motor disability who have feeding tubes are an especially frail group who require numerous health-related resources and treatments. Also, there is a relationship among measures of health status such as the CHQ, functional abilities, use of resources, and mental age, but each appears to measure different aspects of health and well-being and should be used in combination to reflect childrens overall health status.

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.

Use of melatonin in the treatment of paediatric sleep disorders

Abstract: A group of Vancouver health professionals, including the authors, have studied the use of oral melatonin in the treatment of chronic sleep disorders in children with disabilities since the Fall of 1991. This review article is based on the first 100 patients, half of whom were visually impaired or blind. Children with neurological, neuropsychiatric, and developmental disabilities are predisposed to chronic sleep‐wake cycle disturbances. Disorders such as blindness, deafblindness, mental retardation, autism, and central nervous system diseases, among others, diminish the ability of these individuals to perceive and interpret the multitude of cues for synchronizing their sleep with the environment. Melatonin, which benefitted slightly over 80% of our patients, appears to be a safe, inexpensive, and a very effective treatment of sleep‐wake cycle disorders. The oral dose of fast release melatonin taken at bed‐time ranged from 2.5 mg to 10 mg. Side effects or the development of tolerance have not been observed. Since the causes of sleep difficulties are extremely variable, not all children are candidates for treatment. For successful melatonin treatment, clinical experience is required, and the influences of other health problems and medications need to be considered. Further clinical and laboratory research in this field is imperative because melatonin treatment offers enormous health, emotional, social, and economic benefits to society, especially since multidisabled children with chronic sleep difficulties do not respond well to current therapeutic regimes.

Impact of Caring for a Child With Cancer on Parents’ Health-Related Quality of Life

PURPOSE To compare the health-related quality of life (QOL) of parents of children who are undergoing treatment for cancer with that of Canadian population norms and to identify important parent and child predictors of parental QOL. PATIENTS AND METHODS A total of 411 respondents of 513 eligible parents were recruited from five pediatric oncology centers in Canada between November 2004 and February 2007. Parents were asked to complete a questionnaire booklet that included a measure of adult QOL (SF-36), a measure of child health status (functional status IIR), and questions to assess health-promoting self-care actions (eg, sleep, diet, and exercise habits) and characteristics of the child with cancer (eg, relapse status, time since diagnosis, prognosis, treatment intensity). RESULTS Compared with population norms, parents of children with cancer reported poorer physical and psychosocial QOL in all psychosocial domains (effect sizes range, -0.71 to -1.58) and in most physical health domains (effect sizes range, -0.08 to -0.63). Parent characteristics associated with better parental QOL included better eating, exercise and sleep habits, younger age, and higher income. Child characteristics associated with better parental QOL included better child health status (functional status IIR scores), lower treatment intensity, and longer time since diagnosis. CONCLUSION Parents of children with cancer report poorer QOL compared with population norms. Interventions directed at parents should be included as part of the treatment plan for a child with cancer. Modifiable variables associated with poorer parental QOL, such as sleep quality and diet and exercise habits, indicate those parents most likely to experience poor QOL and may be potential areas for intervention.

Biobehavioral Responses to Acute Pain in Adolescents with a Significant Neurologic Impairment

OBJECTIVE To further understand acute pain response in children with a significant neurologic impairment (SNI), we undertook a descriptive hypothesis-generating study of the response to a routine vaccine among adolescents with SNI. DESIGN Within-subject crossover design. SETTING Tertiary care facility for children and adolescents with SNI. PATIENTS Eight adolescents (mean age = 15 years). INTERVENTIONS Mock and real vaccine injections. OUTCOME MEASURES Quantitative measures of heart rate, videotaped facial action, Child Facial Coding System (CFCS), and Facial Action Coding System (FACS); observer ratings visual analog scale (VAS) were obtained before, during, and after a mock injection and routine annual influenza vaccine injection presented in a counterbalanced order. RESULTS VAS scores were significantly higher during the injection phase than during the other time periods; however, there were no significant differences across study time periods when using the other outcome measures. CONCLUSIONS Although the dampened behavioral and physiologic reactions to an acute noxious stimulus were similar to those of previous work with developmentally delayed children and frail elderly, it remains unclear what underlies the apparent reduced pain response in this setting. These findings have potentially important implications for the daily care of individuals with significant neurologic impairment and illustrate the compelling need tor further study of the unique character of the pain experience in this setting.

Effects of gastrostomy feeding in children with cerebral palsy: an AACPDM evidence report.

The objective of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) evidence reports is to provide the biomedical research and clinical practice communities with the current state of evidence about various interventions for the management of developmental disabilities. The AACPDM evidence reports aggregate all that has been published about outcomes of an intervention for a medical condition, gauge the credibility (i.e. strength of the internal validity) of that evidence, and identify gaps in our scientific knowledge. Methodology for developing and procedures for approving these systematic reviews can be found on the internet at www.aacpdm.org in the AACPDM Database of Evidence Reports, which contains initial and updated reports.

Performance measurement and improvement frameworks in health, education and social services systems: a systematic review

PURPOSE To perform a systematic review, supplemented by a targeted grey literature scan, for performance measurement and improvement frameworks within and across the health, education and social service systems. The intended outcome was the creation of a foundation of evidence to inform the development of cross-sectoral quality improvement frameworks. DATA SOURCES MEDLINE, CINAHL, PsycINFO, ERIC, EMBASE, Social Services Abstracts, Social Work Abstracts and Education Index Full Text were searched up to April/May 2007. In addition, 26 governmental and 27 organizational websites were searched. STUDY SELECTION English language material with a publication date of 1986 or more recent that described a health, education or social services multidimensional framework for performance measurement and improvement. Data extraction The framework name; administrative sector; level of application; setting; population of interest; categories of quality described within the framework; country of application; and citations to other performance measurement and improvement frameworks were extracted from each article. RESULTS In total, 111 frameworks were identified. Most frameworks (n = 97) were developed in or for the health sector. A concept sorting exercise identified 16 quality concepts applicable across many settings, sectors and levels of application. CONCLUSION This systematic review of quality domains will be relevant and useful to those who are developing and using performance measurement and improvement frameworks for adult and child populations within or across the health, social service or education sectors.

International Classification of Functioning, Disability and Health Core Sets for children and youth with cerebral palsy: a consensus meeting.

The objective of this article is to report on the Core Sets developed for children and youth aged 0 to 18 years, with cerebral palsy (CP) based on the pediatric International Classification of Functioning, Disability and Health (ICF) by the World Health Organization (WHO).

Parents of children with cancer: Which factors explain differences in health-related quality of life

Research with parents of children with cancer has identified factors related to their adjustment and coping, but it is not fully understood why some parents do well and others do not. Guided by a stress process model, we examined the interrelationships among a comprehensive set of factors to identify the most important determinants of health‐related quality of life (HRQoL) in parents of children in active treatment for cancer. A cross‐sectional survey of 411 parents (80% response rate) of children receiving cancer treatment in Canada was conducted between November 2004 and February 2007. The following constructs were measured: background and context factors, child characteristics, family‐centered service delivery, caregiver strain, intrapsychic factors, coping/supportive factors and parental HRQoL. The model was evaluated using structural equation modeling. Analysis was stratified by time since diagnosis (i.e., <12 months and ≥12 months). For those within 12 months of their childs diagnosis, family‐centred service provision, caregiver strain, and self‐perception accounted for 58% of the variation in psychosocial health, whereas caregiver strain and social support explained 50% of the variation in physical health. For parents in the >12 month group, caregiving strain was the only factor with a direct relationship with parental psychosocial and physical health, accounting for 66% and 55% of the variance in these constructs, respectively. Our findings reinforce the need for health professionals to be particularly attuned to family caregivers in the early stages of treatment and identify potential areas for interventions to promote parental health.

'He does not see himself as being different': the perspectives of children and caregivers on relevant areas of functioning in cerebral palsy.

In the context of the development of the International Classification of Functioning, Disability and Health (ICF) Core Sets for children and adolescents with cerebral palsy (CP), we investigated the strengths and limitations in functioning important to children with CP, through either child self‐reports or caregiver proxy reports, using components of the International Classification of Functioning, Disability and Health for Children and Youth (ICF‐CY).