Title: The provision of antenatal information for the NHS Newborn Bloodspot Screening Programme (NBSP)
Funder: Department of Health (England)

Abstract: Design. A two phase sequential exploratory mixed methods project.(1) Health Technologies Being Assessed: Current practice of providing NBSP information antenatally and associated consent. Measurement of cost and outcomes: The provision of NBSP information antenatally meets many of the criteria of the MRC’s definition of a complex intervention. At present there are insufficient data to effectively design a comparison of alternative communication models. Therefore this project focuses on providing the necessary data to facilitate such evaluation via two phases. The first will generate alternative models of NBSP communication and consent establish costs of current best practice and examine parents understanding of NBSPs following this model. Phase 2 will quantitatively measure preference and costs of alternative models of communication and consent with the acceptability and broader impact of the alternative models and study findings being examined through a qualitative study with parents NBSP providers and key stakeholders. The setting target population sample size research objectives [RO] answered and timeline for each study is outlined below.Phase 1: 1: A realist review to generate characteristics of alternative models of communication and consent for NBSPs [RO1; months 1-3].2: Interviews regarding experiences and views of current practice and alternative models [RO23; months 1-14]. Service providers: Telephone interviews will be conducted with all national newborn screening co-ordinators (N=9) and purposively sampled hospital screening co-ordinators (N=18) community midwives (N=14) and hospital based midwives (N=4). Telephone interviews enable busy health professionals to participate in health service research.(23) Parents: Parents (N=77) from across the screening pathway and with a range of experiences and characteristics will be purposively sampled in the North West Strategic Health Authority via midwives and health visitors to participate in face-to-face interviews. Sample sizes were approximated to ensure variation in screening experience whilst permitting timely reporting of data and was based on previous experience of gathering such data (4) and consultations with our study advisors (see project description). 3: Resource use and costs of current practice [RO4; months 1-9]. Survey: A national sample of midwives (N=300) recruited via the Royal College of Midwives (RCM) register to capture resource use in current practice. Observational study: Data from study 2 and the survey will direct purposive sampling of 5-8 midwives in the North West SHA to be directly observed for one week each. This will be achievable in terms of project resources and also give a reasonable view of the breadth of current practice.Phase 2: 4: A discrete choice experiment (DCE) of preferences for alternative models [RO5; months 10-15]. A DCE will be designed using the responses from phase 1 to define the attributes and levels regarding communication models to elicit and quantify trade-offs for service process and outcome attributes from 250 midwives sampled and 500 current and prospective parents. The views of midwives and parents will be compared. The samples should be sufficient to estimate preferences in astudy design comprising ~6 attributes.


Research activity codes: 4.3 INFLUENCES AND IMPACT
Health categories: CONGENITAL DISORDERS