Eliciting Preferences for Information Provision in Newborn Bloodspot Screening Programs.

ABSTRACT

BACKGROUND: The national newborn bloodspot screening programs (NBSPs) are continually expanding to screen for more conditions. OBJECTIVES: To quantify parents' preferences for information and the way in which this is provided in example NBSPs. METHODS: A hybrid choice experiment, combining a conjoint analysis and a discrete choice experiment, was designed. A sample of current and future parents between the ages of 18 and 45 years was identified via an Internet panel. Respondents completed one of two survey versions (9 conditions and 20 conditions) comprising a validated measure of attitudes toward involvement in decision making, 6 CA questions (11 information attributes), 10 DCE questions (4 attributes 3 process and the ability to make an informed decision), and demographic questions. RESULTS: Of the 702 respondents who completed the survey, 58% were women, 48% were between 25 and 34 years old, and 48% were current parents. All types of information were identified to statistically significantly improve parents' ability to make a decision. Participants preferred taking an "active" role in decision making. Respondents to the 9-condition survey preferred information before 20 weeks (willingness to pay [WTP] £11.88; CI £5.56 to £19.53) and the 20-condition group after 20 weeks (WTP £15.91; CI £10.64 to £21.63). All respondents disliked receiving information 3 days after birth, with the 20-condition group also being averse to receiving it on day 5 (WTP -£11.20; CI -£18.40 to 5.72). Respondents in both groups preferred to receive their information in an individual discussion. CONCLUSIONS: This study suggests that parents' preferences for receiving NBS information differ from how this information is given in current UK practice.