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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.
Summary
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.