Published online August 31, 2007
PEDIATRICS Vol. 120 No. 3 September 2007, pp. e587-e595 (doi:10.1542/peds.2006-2407)
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ARTICLE

Functional Outcomes and Participation in Young Adulthood for Very Preterm and Very Low Birth Weight Infants: The Dutch Project on Preterm and Small for Gestational Age Infants at 19 Years of Age

Elysée T. M. Hille, PhDa,b, Nynke Weisglas-Kuperus, MD, PhDa, J. B. van Goudoever, MD, PhDa, Gert W. Jacobusse, MScb, Martina H. Ens-Dokkum, MD, PhDc, Laila de Groot, PhD, MCSPd, Jan M. Wit, MD, PhDe, Wil B. Geven, MD, PhDf, Joke H. Kok, MD, PhDg, Martin J. K. de Kleine, MD, PhDh, Louis A. A. Kollée, MD, PhDi, A. L. M. Mulder, MD, PhDj, H. L. M. van Straaten, MD, PhDk, Linda S. de Vries, MD, PhDl, Mirjam M. van Weissenbruch, MD, PhDd, S. Pauline Verloove-Vanhorick, MD, PhDb,e for the Dutch Collaborative POPS 19 Study Group

a Division of Neonatology, Department of Pediatrics, Erasmus Medical Center–Sophia Children's Hospital, Rotterdam, Netherlands
b Business Unit Prevention and Healthcare, Netherlands Organization for Applied Research Quality of Life, Leiden, Netherlands
c Royal Effatha Guyot Group, Zoetermeer, Netherlands
d VU University Medical Center, Amsterdam, Netherlands
e Leiden University Medical Center, Leiden, Netherlands
f University Medical Center Groningen, Beatrix Children's Hospital, Groningen, Netherlands
g Emma Children's Hospital Academic Medical Center, Amsterdam, Netherlands
h Máxima Medical Center, Veldhoven, Netherlands
i University Medical Center St Radboud, Nijmegen, Netherlands
j University Hospital Maastricht, Maastricht, Netherlands
k Isala Clinics, Zwolle, Netherlands
l Wilhelmina Children's Hospital, University Medical Center, Utrecht, Netherlands

OBJECTIVE. Young adults who were born very preterm or with a very low birth weight remain at risk for physical and neurodevelopmental problems and lower academic achievement scores. Data, however, are scarce, hospital based, mostly done in small populations, and need additional confirmation.

METHODS. Infants who were born at <32 weeks of gestation and/or with a birth weight of <1500 g in the Netherlands in 1983 (Project on Preterm and Small for Gestational Age Infants) were reexamined at age 19. Outcomes were adjusted for nonrespondents using multiple imputation and categorized into none, mild, moderate, or severe problems.

RESULTS. Of 959 surviving young adults, 74% were assessed and/or completed the questionnaires. Moderate or severe problems were present in 4.3% for cognition, 1.8% for hearing, 1.9% for vision, and 8.1% for neuromotor functioning. Using the Health Utility Index and the London Handicap Scale, we found 2.0% and 4.5%, respectively, of the young adults to have ≥3 affected areas in activities and participation. Special education or lesser level was completed by 24%, and 7.6% neither had a paid job nor followed any education. Overall, 31.7% had ≥1 moderate or severe problems in the assessed areas.

CONCLUSIONS. A total of 12.6% of young adults who were born very preterm and/or with a very low birth weight had moderate or severe problems in cognitive or neurosensory functioning. Compared with the general Dutch population, twice as many young adults who were born very preterm and/or with a very low birth weight were poorly educated, and 3 times as many were neither employed nor in school at age 19.

Key Words: very low birth weight infants • very preterm infants • young adulthood • long-term outcome • cognitive function • neurosensory function • quality of life • education • employment

Abbreviations: VLBW—very low birth weight • POPS—Project on Premature and Small for Gestational Age Infants • WHO—World Health Organization • HUI3—Health Utility Index Mark 3 • LHS—London Handicap Scale • CI—confidence interval

Accepted Jan 30, 2007.