Background: Currently medical decisions regarding extremely low birthweight (ELBW) infants are made by physicians and parents without clear knowledge of whether these groups share common values about disabling health states that may result from the application of neonatal intensive care.Objectives: To measure and to compare preferences (utilities) for selected health states obtained from health professionals (HP) with those obtained from parents (P). Design: We used the Standard Gamble technique (Chance Board) which measures preferences under conditions of uncertainty and yields a single cardinal utility score between -1.0 and 1.0, where -1.0 is the maximum amount a health state can be worse than death; 0 = dead and 1.0 = perfect health. Professional interviewers presented each respondent with 4 preselected hypothetical health state descriptions of varying severity to quantify the health-related quality of life (HRQL) for each health state. Setting: Health professionals working in NICU; parents of extremely low birthweight (ELBW) teenaged children from a geographically defined region and matched controls (C).Participants: Health professionals = 203 (87 neonatologists, 13 pediatricians, and 103 NICU nurses); parents = 274 (148 ELBW and 126 C).Results: No differences in HRQL scores were observedwithin health professional and parent groups. Overall, HP rated the health states lower than P (F 38.2, p < 0.0001); 64% of HP and 45% of P rated at least one health state to be worse than death (p = 0.0001). HRQL scores (mean, SD) were: Table Conclusions: Although HP ratings of HRQL were lower than P, the differences in scores were most pronounced for the two most morbid states (“Pat” and“Sandy”). It appears that P are more accepting of the more disabling health states than HP, although there was considerable variability within both groups. These differences in viewpoint should be taken into consideration during medical decision-making in the NICU.

Table 1
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