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OBJECTIVE. The goal was to compare health-related quality of life of 12- to 16-year-old adolescents born at an extremely low birth weight in regional cohorts from Ontario (Canada), Bavaria (Germany), and the Netherlands. METHODS. Patients were extremely low birth weight survivors from Canada, Germany, and the Netherlands. Health-related quality of life was assessed with Health Utilities Index 3. Missing data were substituted by proxy reports. Differences in mean Health Utilities Index 3 scores were tested by using analysis of variance. Differences in the numbers of children with affected attributes were tested by using logistic regression analyses. RESULTS. Survival rates were similar; response rates varied between 71% and 90%. Significant differences in health-related quality of life were found between the cohorts, with Dutch children scoring highest on Health Utilities Index 3 and German children scoring lowest, independent of birth weight, gestational age, and cerebral palsy. Differences in mean utility scores were mainly attributable to differences in the cognition health attribute. Most of the results were corroborated by logistic regression analyses. CONCLUSIONS. There were significant differences between the 3 cohorts in health-related quality of life, not related to differences in birth weight, gestational age, or cerebral palsy. Survival and response rates alone cannot explain these differences.

OBJECTIVES. The goals were to compare the self-reported, health-related quality of life of former extremely low birth weight and normal birth weight infants at young adulthood and to determine whether there were any changes over time.METHODS. A prospective, longitudinal, population-based study with concurrent control subjects was performed. We interviewed 143 of 166 extremely low birth weight survivors (birth weight: 501–1000 g; 1977–1982 births) and 130 of 145 sociodemographically comparable, normal birth weight, reference subjects. Neurosensory impairments were present for 27% extremely low birth weight and 2% normal birth weight young adults. Health Utilities Index 2 was used to assess health status, and standard gamble technique was used to measure directly the self-reported, health-related, quality of life and 4 hypothetical health states.RESULTS. Extremely low birth weight young adults reported more functional limitations in cognition, sensation, mobility, and self-care, compared with control subjects. There were no differences between groups in the mean self-reported, health-related, quality of life or between impaired (n = 38) and nonimpaired (n = 105) extremely low birth weight subjects. However, with a conservative approach of assigning a score of 0 for 10 severely disabled, extremely low birth weight subjects, the mean health-related quality of life was significantly lower than control values. Repeated-measures analysis of variance to compare health-related quality-of-life measurements obtained for young adults and teens showed the same decline in scores over time for both groups. There were no differences between groups in the ratings provided for the hypothetical health states.CONCLUSIONS. At young adulthood, health-related quality of life was not related to size at birth or to the presence of disability. There was a small decrease in health-related quality-of-life scores over time for both groups.

Background. We have previously shown that infants who were extremely low birth weight (ELBW) are particularly vulnerable to problems related to inattention and hyperactivity at school age. It is not known whether these problems persist to adolescence. Objective. To explore and compare the levels of psy- chopathology in a regional cohort of ELBW infants and sociodemographically matched term controls as reported by teens and their parents. Design/Methods. Cross-sectional cohort study/geo- graphically defined region. Participants. Teens: ELBW 141/169 (83%) and control 122/145 (84%), aged 12 to 16 years. Parents: ELBW 143/169 (85%) and control 123/145 (85%). Both cohorts and their parents completed the Ontario Child Health Study-Re- vised questionnaire with 6 behavioral subsca1es: conduct disorder, oppositional defiant disorder, attention-deficit/ hyperactivity disorder (ADHD), overanxious, separation anxiety, and depression. Results. By teen self-report, there were no significant differences between ELBW and control teens on any of the 6 subscale scores. However, parents of ELBW teens reported significantly higher scores than parents of con- trol for depression and ADHD based on 2-way analysis of variance (group gender). Comparison within teen/ parent dyads showed that both cohorts of teens reported significantly higher scores than their parents. Multivari- able analyses on behavioral subscale scores demon- strated a number of variables that were significant pre- dictors by parent report: group (ELBW vs control), gender, family function, developmental quotient, mater- nal mood, and socioeconomic status; no predictors were significant by teen report. There were no statistically significant interaction effects for any of the models. These models explained a greater percent of the variance in behavioral scores for parents than for teens (12.5%- 22.0% vs 3.4%- 8.2%). Results were similar when teens with neurosensory impairment were excluded. Conclusions. This study is unique in the inclusion of both parent and teen self-report of behaviors. Significant differences were apparent only by parent report for ADHD and depression among ELBW teens. Significant predictors of behavioral scores for parents include group, gender, family function, developmental quotient, mater- nal mood, and socioeconomic status. Pediatrics 2003;111: 969 -975; extremely low birth weight, attention deficit hy- peractivity disorder, psychopathology, social competence, prematurity, 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.

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 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.

ContextIn 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.ObjectiveTo 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.DesignCross-sectional cohort study.Setting and ParticipantsA 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 MeasurePreferences (utilities) for 4 to 5 hypothetical health states of children were obtained by direct interviews using the standard gamble method.ResultsOverall, 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

We appreciate the opportunity to respond to the perceptive questions raised by Drs Kaempf and Tomlinson regarding our article.1 We have read with interest their recent article on counseling of parents of periviable fetuses and infants.2 We understand the dilemma faced by the authors in their inability to reconcile their guidelines for recommending nonintervention of infants

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.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.Geographically defined region in central-west Ontario, Canada.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.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% (p0.0001). 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 p0.0001).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.

Objective. To determine whether there are any differences between the self-esteem of a cohort of adolescents who were extremely low birth weight (ELBW) in comparison with term controls (Cs); and to test the associations between self-esteem and several predefined predictor variables. Background. Self-esteem is considered to play a significant role in psychological adjustment and scholastic success. Little information exists on how adolescents who were ELBW regard themselves. Design/Methods. Longitudinal follow-up of a regional cohort of 132/169 (78%) ELBW survivors and 127/145 (88%) sociodemographically matched Cs, born between 1977 and 1982. Measures: Harter Adolescent Self-Perception Profile (1988) with 9 dimensions, including Global Self-Worth, socioeconomic status (Hollingshead), height-for-age and weight-for-age z scores, and Wide Range Achievement Test—Revised (WRAT-R; Reading, Spelling, and Arithmetic). Data Analysis: General linear model multiple analyses of covariance were performed to determine whether significant relationships existed between the 9 self-esteem dimensions and the independent variables of birth weight status and gender, and the covariates of age, socioeconomic status, physical development, and academic achievement. Results. Global Self Worth was similar for ELBW and Cs (means: 3.1 and 3.2). Multivariate effects revealed no interactions, but significant main effects emerged for birth weight status, gender, weight-for-age z scores, age in months, and for all 3 WRAT-R subtests, all effect sizes medium to large. Follow-up analysis of covariance revealed medium-size gender effects for athletic competence (means: 3.1 and 2.6), and physical appearance (means: 2.9 and 2.5), where boys rated themselves significantly higher on both domains; and age effects, where older teens rated themselves better for job competence. Significant but small effect sizes emerged for the following: 1) weight-for-age z scores, where heavier youth rated themselves higher on close friendships, 2) gender, where girls had higher ratings for close friendships, 3) birth weight, where Cs rated themselves higher on athletic competence, and 4) WRAT-R math effect, where children with higher math scores rated themselves better on scholastic competence. Conclusions. Overall, ELBW teenagers do not differ significantly from C teenagers on most dimensions of self-esteem. Gender effects emerged on some Harter domains.