Glycerin suppositories used prophylactically in premature infants (supp): A pilot randomized controlled trial.

BACKGROUND: Glycerin suppositories are often used to facilitate meconium evacuation in premature infants. The evidence for this practice is inconclusive. The purpose of this study was to assess the feasibility of a multicenter randomized controlled trial on the effectiveness of this treatment strategy. STUDY DESIGN: We conducted an external pilot study for a multicenter randomized controlled trial of premature infants randomized to glycerin suppositories or placebo procedure. Participants were included if they were gestational age of 24 weeks 0 days to 31 weeks 6 days and/or birthweight of 500 to 1500 grams. We excluded infants with life-threatening congenital anomalies, contraindications to receiving suppositories, or signs of clinical instability. Outcomes included cost, recruitment, and treatment-related adverse events. RESULT: A total of 109 were screened, 79 were initially eligible, and 34 consented to participate. Four of these infants were excluded prior to randomization due to thrombocytopenia, 30 were randomized, and 26 reached full enteral feeds. Three infants (10%) experienced rectal bleeding 5 to 43 days after completing study treatments. An anal fissure was noted in two of these patients. There were no cases of rectal perforation but one infant assigned to active treatment developed necrotizing enterocolitis. CONCLUSIONS: Conducting a multicenter randomized controlled trial on the use of glycerin suppositories in premature infants is feasible. Minor modifications to the study protocol are needed to increase participant recruitment and simplify the administration of study treatments.

Parenting children with neurodevelopmental disorders and/or behaviour problems.

BACKGROUND: Parenting behaviours influence child well-being and development. However, much of the research on parenting behaviours and their correlates has focused on caregivers of healthy, typically developing children. Relatively less is known about the parenting behaviours of caregivers of children with chronic health conditions. OBJECTIVE: To examine and compare three parenting behaviours (positive interactions, consistency and ineffective parenting) among caregivers of children with neurodevelopmental disorders and/or externalizing behaviour problems, before and after accounting for child and family socio-demographic characteristics. METHODS: Participants (n= 14 226) were drawn from the National Longitudinal Survey of Children and Youth, a long-term study of Canadian children that follows their development and well-being from birth to early adulthood. Children (and their caregivers) were divided into four groups according to the presence of a neurodevelopmental disorder (NDD; n= 815), the presence of an externalizing behaviour problem (EBP; n= 1322), the presence of both conditions (BOTH; n= 452) or neither of these conditions (NEITHER; n= 11 376). RESULTS: Caregivers of children in the NEITHER group reported significantly higher positive interaction scores and lower ineffective parenting behaviours than caregivers of children in any of the other three groups. Caregivers of children in the EBP and BOTH groups reported similar levels of consistency, but significantly lower levels than caregivers of NDD or NEITHER children. These associations largely remained after accounting for child and family socio-demographic characteristics, with two exceptions: caregivers' reports of positive interactions were no longer significantly associated with child's NDD and BOTH conditions. CONCLUSIONS: Parenting children with multiple health conditions can be associated with less positive, less consistent and more ineffective parenting behaviours. Understanding the factors that are associated with the challenges of caring for these children may require additional research attention.

Contextual influences of parenting behaviors for children with neurodevelopmental disorders: results from a Canadian national survey.

PURPOSE: This population-based study examined correlates of three parenting behaviors (positive interactions, consistency, and ineffective parenting) that have been shown to differ in children with neurodevelopmental disorders (NDDs), with and without externalizing behavior problems (EBPs), as compared to children with neither condition. METHOD: The sample of children aged 4-11 (N = 14,226) was drawn from the Canadian National Longitudinal Survey of Children and Youth (NLSCY). Analyses examined the associations of child, parental, and social context factors with parenting behaviors, and whether they differed by child health group. RESULTS: Child age, family functioning, and social support variables were significant predictors of all three parenting behaviors. Significant interaction effects highlight the importance of the child's sex, birth order, and support received from community or social service professionals, and that these factors have differential impacts on parenting behaviors depending on the child's health group. CONCLUSIONS: Other Child, parent, and social context factors are associated with parenting behaviors but these associations vary by the child's health group. Parenting behaviors differ for children with NDDs with and without EBPs. These findings offer important implications for practice and research and point to the importance of considering multiple contexts of influence, as well as their interactions, in understanding differences in parenting behaviors.

Proposed motor development assessment protocol for epidemiological studies in children.

This paper proposes an approach to the implementation of a large-scale epidemiological study of child development. It addresses specifically how one might assess gross motor development longitudinally in a large population-based study of children, and recommends a three-phase process. Phase I, applied at key ages with the entire population, involves the use of parent-report screening tools that ask about specific age-appropriate motor skills, as well as any parental concerns about "quantity" or "quality" of their child's motor function and about any loss of motor function. In phase II, children who "fail" the screening phase (at any stage) are evaluated with specified developmental motor assessments. Those who "pass" revert to the screening stream, while those who "fail" continue to phase III. In this third component of the study, children are referred to experts in child development formally engaged in the study (including developmental paediatricians, paediatric neurologists and developmental therapists). These experts will use protocol-based evaluations to ascertain whether a child has a problem in development, what the problem might be from a diagnostic perspective, how "severe" the problem is, and what management services are or should be provided. It is argued that this is an efficient approach to the study of a population that would enable investigators to detect specific relatively common developmental motor disorders (in particular, cerebral palsy and developmental coordination disorder).

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.