Clinical Research Assistant Medical College of Wisconsin Medical College of Wisconsin Department of Pediatrics Milwaukee, Wisconsin, United States
Background: The National Institute of Child Health and Human Development (NICHD) Workshop on Periviable Birth recommended that information on the chance of survival and risk of disability should be provided separately. The order in which information is presented can affect memory and treatment choice. The effect of a description of the long and intense time in the neonatal intensive care unit (NICU) on parental treatment decision making is also unexplored.
Objective: We conducted an experiment to examine whether the order of presenting survival versus disability information, with or without the description of infant NICU experiences, would influence treatment choice.
Design/Methods: Three pictographs were developed based on NICHD data for 22 weeks gestational age (GA) babies who received intensive care (Figure 1). An internet survey was sent to a sample of U.S. women of child-bearing age. A vignette including background on prematurity and the treatment options of intensive care (IC) or comfort care (CC) for a baby born at 22 weeks GA was presented. Participants viewed the pictographs, evenly randomized to one of four experimental conditions (order of information presentation x level of description of NICU course). Participants were then asked to choose IC or CC. Participant religiosity, values (quality vs. sanctity of life), autonomy preferences in medical decision making, previous NICU exposure, numeracy, and health literacy were assessed.
Results: Of the 839 participants (16% with previous NICU exposure; 31% with low health literacy), 66% chose IC. Order of information influenced treatment choices (p=0.02); participants were more likely to choose IC when they saw survival information first than after seeing disability information first. Level of description of NICU experiences did not influence treatment choice (p=0.92). Participants who valued sanctity of life (p<0.001), autonomy in making decisions (p<0.001), reported higher subjective religiosity (p=0.001), and had adequate health literacy (p=0.003) were more likely to choose IC. Within groups with similar backgrounds and values, a significant-sized minority still preferred a different treatment than the majority; see Table 1. Conclusion(s): Subtle differences in how information is presented in periviable counseling may influence critical decisions. However, even amongst women with the same values, diversity in treatment choice remains persistent. These findings do not support a uniform policy dictating either intensive care or comfort care at 22 weeks GA.
Figure 1. Pictographs displaying outcomes of infants born at 22 weeks and given intensive care.
Table 1. Treatment choice based on information characteristics and participant values
Authors/Institutions: Siobhan McDonnell, Medical College of Wisconsin Department of Pediatrics, Milwaukee, Wisconsin, United States; Ke Yan, Medical College of Wisconsin, Milwaukee, Wisconsin, United States; Una O. Kim, Medical College of Wisconsin Department of Pediatrics, Milwaukee, Wisconsin, United States; Kathryn E. Flynn, Medical College of Wisconsin Department of Medicine, Milwaukee, Wisconsin, United States; Melodee Liegl, Medical College of Wisconsin, Milwaukee, Wisconsin, United States; Steven R. Leuthner, Medical College of Wisconsin Department of Pediatrics, Milwaukee, Wisconsin, United States; Jennifer J. McIntosh, Medical College of Wisconsin, Milwaukee, Wisconsin, United States; Mir Basir, Medical College of Wisconsin Department of Pediatrics, Milwaukee, Wisconsin, United States
