Long term follow-up of health-related quality of life in young adults born very preterm or with a very low birth weight.

BACKGROUND: The purpose was, first, to evaluate changes in health-related quality of life (HRQL) in a cohort of very low birth weight (VLBW; <1500 g.) or very preterm (< 32 weeks of gestation) children between ages 14 and 19, and second, to identify correlates of HRQL at age 19. METHODS: HRQL was assessed using the Health Utilities Index Mark 3 (HUI3). In order to explore correlates of HRQL, we performed a hierarchical regression analysis. RESULTS: Surviving VLBW children (n = 959) from a 1983 Dutch nation-wide cohort were eligible; 630 participated both at age 14 and 19; 54 at age 19 only. The mean HRQL score decreased from 0.87 to 0.86. The HRQL of 45% was stable, 25% were better and 30% were worse. A regression model showed internalizing problems were related most strongly to HRQL. CONCLUSIONS: In the transition from adolescence to young adulthood, HRQL in Dutch VLBW children was stable at the group level but varied at the individual level. HRQL was negatively associated with internalizing problems and also with physical handicaps. Long-term follow-up studies on the impact of VLBW on HRQL are all the more called for, given the growing number of vulnerable infants surviving the neonatal period.

Health-related quality of life for extremely low birth weight adolescents in Canada, Germany, and the Netherlands.

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.

Employment in adults with congenital heart disease.

OBJECTIVE: To evaluate job participation, career-related problems, and actual job problems in adults with complex congenital heart disease (CHD) compared with adults with mild CHD and reference groups. DESIGN: Cross-sectional study. SETTING: Patients were randomly selected from the archives of the Department of Pediatric Cardiology, Leiden University Medical Center, Leiden, the Netherlands. PATIENTS AND MAIN OUTCOME MEASURES: In total, 76 patients with complex CHD and 80 with mild CHD (age range, 17-32 years) completed a self-reported questionnaire on employment and handicaps, with reference data available (response rate, 70%). RESULTS: In the study groups, 45 (59%) of 76 patients with complex CHD had a paid job compared with 61 (76%) of 80 patients with mild CHD. Patients older than 25 years with complex CHD had significantly lower job participation (64%) than the general population (83%). Multiple logistic regression showed that type of CHD and level of education were significantly and independently related to job participation (odds ratio, 4.8; 99% confidence interval, 1.2-19.6; and odds ratio, 4.7; 99% confidence interval, 1.3-17.2, respectively). Of the 76 patients with complex CHD, 42 (55%) experienced disease-related career problems, in contrast to only 1 patient with mild CHD. Both CHD groups had more job-related mobility handicaps than did the reference group. However, in the mild CHD group, handicaps could be attributed to additional noncardiac diseases. CONCLUSIONS: Patients with complex CHD have reduced job participation compared with patients with mild CHD and the general population. Many receive disability benefits or experience career problems or job handicaps. Career counseling focusing on physical abilities and level of education may help prevent or reduce these job-related problems.