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Saroj Saigal, MD, FRCPC; Barbara L. Stoskopf, RN, MHSc; Elizabeth Burrows, MBA; David L. Streiner, PhD; Peter L. Rosenbaum, MD, FRCP

Arch Pediatr Adolesc Med. 2003;157:261-269.

Background  We have previously shown that parents of premature children provided relatively high valuation of their children's health state in adolescence. However, stability of parental preferences for future pediatric health states is unknown during the antenatal and neonatal periods and infancy.

Objective  To determine whether preference-based, health-related quality-of-life scores obtained serially from 2 cohorts (women with high-risk pregnancies [antenatal cohort] and mothers of very low-birth-weight newborns [VLBW cohort]) are stable during the first year after birth.

Design and Methods  Longitudinal cohort study. Participants included 80 high-risk pregnant women recruited at 24 ± 2 weeks of gestation, and 75 mothers of VLBW infants recruited within 1 week of delivery. We conducted 2 to 3 standardized interviews (antenatally, at 1 week after delivery, and at the 12-month corrected age visit) using the Standard Gamble technique to elicit preferences for 5 pediatric hypothetical health states with varying disabilities.

Results  Seventy-three mothers with high-risk pregnancies (91%) and 72 mothers of VLBW infants (96%) completed all scheduled interviews. As expected, preference scores were affected by the level of severity of the hypothetical health states (antenatal cohort, F_4,288 = 87.0 [P<.001]; VLBW cohort, F_4,284 = 64.2 [P<.001]). At each assessment, at least 38% of mothers rated 1 or more health states as worse than death. Repeated-measures analysis showed no change in preference scores over time (antenatal cohort, F_2,144 = 1.3 [P = .29]; VLBW cohort, F_1,71 = 0.7 [P = .42]). Maternal socioemotional factors, infant severity of illness at birth, and global health at 12 months did not affect preference scores.

Conclusion  In our population, maternal preference scores for disabling health states appear to be stable during the first year of life and are unaffected by key maternal and infant variables.

From the Department of Pediatrics, McMaster University, Hamilton, Ontario (Drs Saigal and Rosenbaum and Ms Stoskopf); Center for Clinical Effectiveness, Monash University, Melbourne, Australia (Ms Burrows); and the Department of Psychiatry, University of Toronto, Toronto, Ontario (Dr Streiner).

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