Provision of information about newborn screening antenatally: a sequential exploratory mixed-methods project

Area of Science:

• Public Health
• Health Services Research
• Informed Consent

Background:

• Parental consent for the UK Newborn Bloodspot Screening Programme (NBSP) is mandatory, but concerns exist regarding its practical implementation and cost-effectiveness.
• Current practices may not ensure fully informed consent, impacting parental understanding and engagement.

Purpose of the Study:

• To evaluate various communication and consent models for newborn screening (NBS).
• To assess healthcare professionals' and parents' views on the feasibility, efficiency, and impact of different NBS information provision methods.
• To identify cost-effectiveness drivers for alternative NBS communication strategies.

Main Methods:

• A realist review to develop communication and consent models.
• Qualitative interviews with parents and health professionals.
• Surveys and observations of midwives regarding current costs and practices.
• Stated preference surveys to determine preferences for information delivery.
• Economic analysis to identify cost-effectiveness drivers.
• Stakeholder validation through focus groups and interviews.

Main Results:

• Low parental knowledge and evidence of coercive consent practices were identified.
• A preference for personalized information delivery, tailored to individual learning needs, was observed.
• Health professionals favored informed choice models, while parents supported them if informed about sample storage.
• Uniform information provision methods were found ineffective; personalized approaches enhance engagement, understanding, and consent validity.
• Key cost-effectiveness drivers included information provision methods and maternal anxiety.

Conclusions:

• Focusing on information receipt and addressing communication barriers is crucial for effective NBS.
• Personalized communication, midwife involvement during the third trimester, and clear information about sample storage enhance consent.
• While a choice in information provision improves cost-effectiveness and engagement, further research is needed before implementing new communication modes.