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Objectives: To compare the self-reported health of extremely low birth weight (ELBW, <1 kg) adolescents with that of normal birth weight (NBW) controls and the children's assessments of their general health at ages 8 versus 14 years., Methods: One hundred sixty-eight ELBW children and 115 NBW controls of similar gender and sociodemographic status completed the Child Health and Illness Profile-Adolescent Edition at age 14 years. It includes 6 domains: Satisfaction, Comfort, Resilience, Risk Avoidance, Achievement, and Disorders. At age 8 years, the children had completed the Child Health and Illness Profile-Child Edition. Results were compared between ELBW and NBW subjects adjusting for gender and sociodemographic status., Results: ELBW adolescents rated their health similar to that of NBW adolescents in the domains of Satisfaction, Comfort, Resilience, Achievement and Disorders but reported more Risk Avoidance (effect size [ES] 0.6, P < .001). In the subdomain of Resilience, they also noted less physical activity (ES -0.58, P < .001), and in the subdomain of Disorders, more long-term surgical (ES -0.49) and psychosocial disorders (ES -0.49; both P < .01). Both ELBW and NBW children reported a decrease in general health between ages 8 and 14 years, which did not differ significantly between groups., Conclusions: ELBW adolescents report similar health and well-being compared with NBW controls but greater risk avoidance. Both ELBW and NBW children rate their general health to be poorer at age 14 than at age 8 years, possibly due to age-related developmental changes.

Objective: The purpose of this study was to document the impact and burden of extremely low birth weight (<1000 g) and associated problems on the families of school-aged children in a controlled study. The study was also designed to document the salient predictors of individual differences of family impact within the extremely low birth weight group., Methods: A prospective study was completed at 8 years of a cohort of 219 children with extremely low birth weight born 1992-1995 and 176 children with normal birth weight. Measures included the following predictor variables: socioeconomic status and parent risk, birth risk, neonatal risk, neurodevelopmental outcome, impairment in adaptive abilities, and functional impact of chronic conditions. The primary outcome measure was the Impact on Family scale. A measure of family stressors and resources (the Life Stressors and Social Resources Inventory) was also obtained., Results: The primary finding was that the total family impact was greater in the extremely low birth weight group compared with controls. Moreover, the negative impact on family in specific domains was greater in the extremely low birth weight group in financial impact, caretaker burden, and familial burden. These differences were not attributable to general family stressors, socioeconomic status, child, gender, or race. Higher parent/socioeconomic risk, neurodevelopmental outcomes, and the functional impact of chronic conditions predicted greater family impact within the extremely low birth weight group, whereas birth and neonatal risk scores did not., Conclusions: Extremely low birth weight was associated with a negative impact on families. Socioeconomic parental risk, but most especially child-related factors such as neurodevelopmental and the functional impact of chronic conditions, predicted the negative family impact within the extremely low birth weight group. Findings underscore the need to develop and test interventions to provide support for families of extremely low birth weight infants to ameliorate the burden of extremely low birth weight and associated risk factors on families.