Health status and health-related quality of life in a population-based sample of neonatal intensive care unit graduates

Objective. To measure the health status (HS) and health-related quality of life (HRQL) of preschoolers who were admitted to a neonatal intensive care unit (NICU) at birth and their family caregivers and to investigate differences in HS and HRQL in relation to gestational age and major morbidity experienced during the NICU stay. Methods. Retrospective cross-sectional survey was conducted in the province of British Columbia, Canada. A total of 1140 of 2221 children who were admitted at birth to the 3 tertiary care NICUs in the province and 393 of 718 healthy full-term children recruited from 2 of these hospitals were studied. The main outcome measures were Infant and Toddler Quality of Life Questionnaire (ITQOL), Health Status Classification System Preschool Version (HSCS-PS), and Child Behavior Checklist/1.5-5 (CBCL) Results. The overall response rate was 55%; the response rate for families that we located was 67.1%. NICU children differed from healthy children on the ITQOL in physical abilities, growth and development, temperament/moods, behavior, and general health perceptions, and caregivers differed on both parent-impact scales. On the HSCS-PS, proportionally more NICU children had a health problem in the following areas: sight, speech, getting around, using hands and fingers, taking care of self, learning and remembering, thinking and solving problems, pain and discomfort, general health, and behavior. The NICU sample reported more behavioral problems on the CBCL/1.5-5. Poorer HS and HRQL were reported for infants who were born at <27 weeks' gestation and for children who experienced >= 1 major morbidities during their NICU stay. Conclusions. Preschool-aged children with conditions that require NICU care and their family caregivers had poorer HS and HRQL in a range of domains compared with healthy children. There were also differences within the sample by gestational age and major morbidity. The differences in health were small using the ITQOL and CBCL/1.5-5 but larger using the HSCS-PS.