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Eliciting Preferences for Information Provision in Newborn Bloodspot Screening Programs
Stuart J Wright1, Fiona Ulph2, Nimarta Dharni2
1Manchester Centre for Health Economics, Division of Population Health, Health Services Research and Primary Care, the University of Manchester, Manchester, UK.
Insights
Parents want more involvement in newborn bloodspot screening (NBS) information delivery. Preferences vary by the number of conditions screened, with a desire for individual discussions, not standardized timing.
Area of Science:
- Genetics
- Public Health
- Pediatrics
Background:
- National newborn bloodspot screening programs (NBSPs) are expanding to include more conditions.
- Understanding parental preferences for NBS information is crucial for program improvement.
Purpose of the Study:
- To quantify parents' preferences regarding the type and timing of information provided in NBSPs.
- To assess how parents wish to be involved in the decision-making process for NBS.
Main Methods:
- A hybrid choice experiment combining conjoint analysis and discrete choice experiment was employed.
- Surveys were administered to 702 parents (current and future) aged 18-45, with versions covering 9 and 20 conditions.
- Data collected included attitudes toward decision-making involvement, information attributes, and process preferences.
Main Results:
- Parents prefer an active role in decision-making for NBS.
- Information delivery timing preferences varied based on the number of screened conditions.
- Individual discussions were preferred over standardized information delivery methods.
Conclusions:
- Current UK NBS information practices may not align with parental preferences.
- Tailoring information delivery based on the scope of NBS is recommended.
- Incorporating parental preferences can enhance NBS program effectiveness and engagement.
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.