DEVELOPING A STATED CHOICE EXPERIMENT TO UNDERSTAND PREFERENCES FOR INFORMATION PROVISION IN AN EXPANDED NEWBORN BLOODSPOT SCREENING PROGRAMME

Purpose: Current approaches to information provision in the context of national Newborn Bloodspot Screening Programmes (NBSP) are not sufficient in terms of maximising parents’ ability to make an informed decision. The challenge of information provision will be exacerbated by the proposed expansion of NBSP to include more conditions. This study aimed to design a stated choice experiment (sCE) to understand preferences for information provision in an expanded NBSP in the UK.  

Method: Mixed methods were used to define the (i) choice question (ii) type of sCE (iii) attributes and levels. Four methods were used: (i) systematic review of published (2001-2014) discrete choice experiments (DCEs) eliciting preferences for screening, diagnostic or genetic tests or maternity-related services; (ii) rapid review of NHS-NBSP policy and practice documents and training materials; (iii) consultation with NHS-NBSP experts (2 senior academic midwives; 4 screening co-ordinators; 2 laboratory scientists; a patient-support charity); (iv) semi-structured interviews with 6 parents and 7 regional quality assurance co-ordinators. Key attributes and levels identified from published DCEs and the policy/practice/training documents were tabulated. Qualitative data from experts and semi-structured interviews were analysed using thematic analysis together with data collected from follow-up cognitive (think aloud) interviews with parents and midwives to test attribute/level framing. 

Result: Emerging qualitative themes indicated: (i) the complexity of the choice question; (ii) the relevant study population (new parents; members of the public of child-bearing age; midwives); and (iii) three aspects needed in the sCE design: (a) the extent and type of information attributes (n=12) to facilitate ability to make an informed decision and (b) process attributes related to approaches to information provision (n=4) relative to the ability to make an informed decision (outcome attribute) and (c) capturing the impact of expansion in number of conditions tested by using two survey versions. These results suggested that a hybrid-conjoint analysis (part A) with DCE (part B) was the appropriate type of sCE. The identified published DCEs (n=58 studies) and the document review provided the candidate attributes for parts A and B. Additional background questions on respondents characteristics together with a structured tool to quantify the degree to which respondents seek information should be included in the survey. 

Conclusion: This study developed a hybrid sCE to provide a practical solution to understanding preferences in complex situations.