Psychopathology in young adults born at extremely low birth weight.

BACKGROUND: Little is known about the long-term mental health of extremely low birth weight (ELBW) (<1000 g) survivors. We test whether young adults aged 22 to 26 years born at ELBW differ from normal birth weight (NBW) controls in self-reported levels of psychopathology. METHOD: Participants included 142 ELBW survivors (86% response) born between 1977 and 1982 to residents of central-west Ontario, Canada and 133 NBW control subjects (92% response). The Young Adult Self-Report measure was used to create five DSM-IV oriented scales aggregated to form internalizing (depressive problems, anxiety problems, avoidant personality problems) and externalizing (attention deficit-hyperactivity disorder problems and antisocial personality problems) scales. RESULTS: After adjusting for family background characteristics, mean scores for ELBW survivors were 3.02 [95% confidence interval (CI) 0.78-5.26] points higher for internalizing problems and no different, i.e. 0.00 (95% CI -1.17 to 1.17), for externalizing problems. There was a sex × group statistical interaction such that being male muted the risk for externalizing problems among those born at ELBW: -2.11 (95% CI -4.21 to -0.01). Stratifying ELBW adults as born small for gestational age (SGA) versus appropriate weight for gestational age (AGA) revealed a significant gradient of risk for levels of internalizing problems that was largest for SGA, i.e. 4.75 (95% CI 1.24-8.26), and next largest for AGA, 2.49 (95% CI 0.11-4.87), compared with NBW controls. CONCLUSIONS: Depression, anxiety and avoidant personality problems (internalizing problems) are elevated in young adulthood among ELBW survivors. This effect is relatively small overall but noticeably larger among ELBW survivors born SGA.

Development, reliability and validity of a new measure of overall health for pre-school children.

BACKGROUND: Few comprehensive systems are available for assessing and reporting the overall health of preschool children. OBJECTIVES: (i) To develop a multi-dimension health status classification system (HSCS) to describe pre-school (PS) children 2.5-5 years of age; (ii) to report reliability and validity of the newly developed measure. DESIGN: Existing systems (Health Utilities Index, Mark 2 and 3) were adapted for application to a pre-school population. The new system was tested for acceptability, validity and reliability. PARTICIPANTS: Three cohorts of children and their parents from Canada and Australia were utilized: Cohort 1 (MAC)-101 3-years old very low birthweight (VLBW, <1500 g) and 50 same age term children from Canada; Cohort 2 (AUS)-150 VLBW 3-years old from Australia; Cohort 3 (OMG)-222 3-years old with cerebral palsy (CP) from Ontario. METHODS: Parental intra-rater reliability was evaluated by completion of the HSCS-PS Parent questionnaire (MAC) at the clinic visit and again 14 days later. Health professionals (MAC) completed the HSCS-PS Clinician questionnaire. Percent agreement and Kappa values were used to assess parent-clinician agreement. Concurrent validity was tested in two populations of VLBW children (MAC and AUS) and a reference group of term children (MAC) by exploring the relationships between dimensions of the HSCS-PS and well-recognized norm-referenced measures: the Bayley Scales of Infant Development (BSID-II), the Vineland Adaptive Behavior Scales (VABS) and the Stanford-Binet (SB). Construct validity was tested by comparing ratings on both the HSCS-PS and the Gross Motor Function classification system (GMFCS) using a population of pre-school children with CP. Analyses were done using chi2, ANOVA and correlations with tau-b statistic. RESULTS: The HSCS-PS has 12 dimensions and 3-5 levels per dimension. Response rate for parental intra-rater reliability was 95%, with percent agreement ranging between 86 and 100%. Kappa values for various dimensions ranged from 0.38 to 1.00. Inter-rater reliability between parents and clinicians showed agreement ranging from 72 to 100%. Kappa values ranged from 0.30 to 1.00. CONCURRENT VALIDITY: There was a statistically significant gradient between HSCS-PS Mobility levels and motor scale scores of the BSID-II and VABS. A significant gradient also occurred when comparing HSCS-PS cognition levels to psychometric scores on the BSID-II and SB, as well as HSCS-PS self-care levels compared to VABS Daily Living scores. DISCRIMINATIVE AND CONSTRUCT VALIDITY: Birthweight category was shown to be a significant determinant of proportion of children with multiple HSCS-PS dimensions affected. In addition, HSCS-PS dimension levels were congruent with GMFCS levels where expected: mobility had excellent correlation; self-care, dexterity, speech and cognitive dimensions had moderate correlations. CONCLUSIONS: The HSCS-PS is readily accepted, quick to complete, widely applicable and provides a multi-dimensional description of health status. Preliminary assessments of reliability and validity are promising. The HSCS-PS can discriminate across populations by birthweight and shows strong relationships with standardized psychometric measures in comparable domains. It can pro- vide a summary profile of functional limitations in various populations of pre-school children in a consistent manner across programs and in different settings.

Behavioural problems in children who weigh 1000 g or less at birth in four countries.

BACKGROUND: The increased survival chances of extremely low-birthweight (ELBW) infants (weighing <1000 g at birth) has led to concern about their behavioural outcome in childhood. In reports from several countries with different assessments at various ages, investigators have noted a higher frequency of behavioural problems in such infants, but cross-cultural comparisons are lacking. Our aim was to compare behavioural problems in ELBW children of similar ages from four countries. METHODS: We prospectively studied 408 ELBW children aged 8-10 years, whose parents completed the child behaviour checklist. The children came from the Netherlands, Germany, Canada, and USA. The checklist provides a total problem score consisting of eight narrow-band scales. Of these, two (aggressive and delinquent behaviour) give a broad-band externalising score, three (anxious, somatic, and withdrawn behaviour) give a broad-band internalising score, and three (social, thought, and attention problems) indicate difficulties fitting neither broad-band dimension. For each cohort we analysed scores in ELBW children and those in normal- birthweight controls (two cohorts) or national normative controls (two cohorts). Across countries, we assessed deviations of the ELBW children from normative or control groups. FINDINGS: ELBW children had higher total problem scores than normative or control children, but this increase was only significant in European countries. Narrow-band scores were raised only for the social, thought, and attention difficulty scales, which were 0.5-1.2 SD higher in ELBW children than in others. Except for the increase in internalising scores recorded for one cohort, ELBW children did not differ from normative or control children on internalising or externalising scales. INTERPRETATION: Despite cultural differences, types of behavioural problems seen in ELBW children were very similar in the four countries. This finding suggests that biological mechanisms contribute to behavioural problems of ELBW children.

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.

Why do patients call out-of-hours following a recent consultation with their GP? A qualitative study in one general practice.

BACKGROUND: The reasons for the increase in demand for out-of-hours primary care are not clear. OBJECTIVES: We aimed to elicit the proportion of patients who call out-of-hours within 2 days of a GP consultation, and to explore the reasons for the out-of-hours call. METHOD: In one inner-city general practice, details were collected of all out-of-hours calls, over a 6-week period. Patients who called out-of-hours within 2 days of a GP consultation were identified and interviewed. Twenty semi-structured interviews were analysed using standard qualitative techniques. RESULTS: Fifteen per cent of the out-of-hours calls occurred within 2 days of a GP consultation. The reasons for the calls recorded by the doctor out-of-hours and described by the patient at interview were similar. In two-thirds of cases the calls were related to the initial problem, but there was no evidence suggesting dissatisfaction with the first contact as a reason for the call. Less than a quarter of calls were for ongoing acute medical problems, and a quarter were about medication prescribed at the first consultation. A third of the patients had mental health problems with other physical, social and emotional problems. Many of this group were high users of this and other health services, including accident and emergency and private medicine. Some people called with specific queries or were seeking general information to enhance their understanding of illness. CONCLUSION: This small study in one inner-city practice indicates that patients do not appear to call out-of-hours due to dissatisfaction with a previous consultation. There seems to be a wide variety of reasons why this pattern of service use occurs. The diversity of patients and problems and the prevalence of people with multiple problems highlights current challenges in inner-city primary health care.

High phenotypic correlations among siblings with autism and pervasive developmental disorders.

The objective of this study was to examine familial factors influencing clinical variation in sibships that contained at least 2 children affected with autism or another form of pervasive developmental disorder (PDD). The sample included a total of 60 families, 23 with multiple cases of PDD and 37 with a single affected child. Measurements of IQ, adaptive behaviors in socialization and communication, and autistic symptoms were taken on all affected children. A high intraclass correlation, especially on IQ and an index of social behaviors, was observed between affected children from the same family. In contrast, low correlations were observed on measurements of IQ and adaptive behavior between affected and unaffected children from the same family. These data indicate that variation in severity of PDD is influenced by familial, and probably genetic, mechanisms. The results are discussed in relation to current theories on the genetics of autism and the heritable mechanisms underlying variations in clinical severity.

Vineland Adaptive Behavior Scales as a summary of functional outcome of extremely low-birthweight children.

This study reports moderate to high Pearson correlations between Vineland Adaptive Behavior Scale (VABS) subscale and total scores and a variety of cognitive, academic and motor performance tests on a population of extremely low-birthweight infants assessed at eight years of age. The subscales describe adaptive behaviour in daily living, communication, motor function and socialization, as well as an adaptive behaviour composite score. Because it can provide a norm-referenced description of functional outcomes and can be used to assess all children regardless of disability, the authors believe that the VABS should be applied uniformly by all groups reporting school-age outcome of neonatal intensive-care populations.

Comprehensive assessment of the health status of extremely low birth weight children at eight years of age: comparison with a reference group.

OBJECTIVE: To apply a multiattribute health status (MAHS) classification system to data available on two cohorts of school-aged children to describe several dimensions of health simultaneously. The MAHS system describes both the type and severity of functional limitations according to seven attributes: sensation, mobility, emotion, cognition, self-care, pain, and fertility (fertility not applicable in this study), with four or five levels of function within each attribute. DESIGN: The MAHS system was applied retrospectively to clinical and psychometric data collected prospectively at age 8 years. MAHS application was by selection of items from the database and development of computer-assisted algorithms to assign functional levels within each attribute. SETTING: Geographically defined region in central-west Ontario, Canada. PARTICIPANTS: One hundred fifty-six extremely low birth weight (ELBW) survivors born between 1977 and 1982 (follow-up rate 90%) and 145 reference children matched for age, sex, and socioeconomic status. RESULTS: 14% of ELBW subjects had no functional limitations, 58% had reduced function for one or two attributes, and 28% had at least three affected. The corresponding figures for the reference group were 50%, 48%, and 2% (p < 0.0001). The limitations were more severe and complex in the ELBW group, and were notably in cognition (58%), sensation (48%), mobility (21%), and self-care (17%), compared with 28%, 11%, 1%, and 0% for reference children (all p < 0.0001). CONCLUSIONS: These data indicate that fewer ELBW than reference children were free of functional limitations and a significantly higher proportion had multiple attributes affected. The MAHS classification approach is a useful instrument to compare the health status of different groups and populations, and to monitor changes with time.

Non-right handedness among ELBW and term children at eight years in relation to cognitive function and school performance.

The relationship between handedness, neurological and cognitive deficits, and school difficulties was investigated in 114 extremely low-birthweight (ELBW) children and 145 term controls at eight years. The prevalence of non-right handedness (left and mixed) was 31 per cent for ELBW children and 19 per cent for controls. ELBW children with neurological impairments were significantly more likely to be non-right handed. No significant differences were noted between right-handed and non-right handed ELBW children and controls on tests of cognitive function, school performance and prevalence of learning difficulties. These findings suggest an association between neurological impairment and non-right handedness, but do not support the hypothesis of early brain insult resulting in subtle cognitive deficits and suboptimal school performance among non-right handed ELBW children.