Measuring the experience of maternity and neonatal service users - development of a maternity Patient Reported Experience Measure (PREM)

Background: The NHS needs a new patient-reported experience measure (PREM) for maternity and neonatal services that is acceptable to as many women and birthing people as possible, reflects the diversity of the population and is robust enough to be used across all aspects of the maternity care pathway.

Existing PREMs have had insufficient input from those who use maternity services, and lack sufficient psychometric rigour.

Developing patient-reported measures without using stringent methods based on up-to-date psychometric techniques risks producing scores that are imprecise, inaccurate and potentially misleading.

Aims and objectives: We will develop and evaluate a new PREM appropriate for maternity and neonatal services that is relevant, robust, technically feasible and accessible to women from a diverse range of backgrounds.

We will develop an instrument with a single set of items that can be administered at each stage of care (antenatal, intrapartum, postnatal and neonatal).

Research plan: We will address issues of diversity and inclusion at every phase of the project using a joint methodological and PPIE approach, ensuring inclusion in each project phase, and instrument testing within each relevant group.

To determine the conceptual framework (phase 1) we will use both “top down” (content review of existing PREMs for maternity care, secondary analysis of existing in-depth interviews with women including experiences of pregnancy, late miscarriage, pregnancy hypertension and maternal morbidity) and ”bottom up” approaches (semi-structured interviews with women who have recently used maternity services to further explore the emerging themes).

To develop the questionnaire items (phase 2) we will stay as close as possible to the wording used by women themselves and ensure that questions are short, simple and easy to use in an electronic format via smartphone.

We will pre-test the questionnaire through a series of cognitive interviews, and iteratively refine the questionnaire to ensure that it is acceptable to women.

In phase 3, we will undertake the technical psychometric work necessary to ensure that the scores from the new PREM are precise, accurate, can be meaningfully interpreted and can form the basis for decision-making in routine maternity care. We will administer the questionnaire via smart phone to women using maternity services across England.

We will use both traditional and modern psychometric methods based on Rasch Measurement Theory to ensure that the final set of items lie on a single continuum and can be combined into a score that has reliability, validity and responsiveness.

In phase 4, we will seek to address the practical and organisational challenges of implementing the new PREM in routine practice.

We will hold 3 workshops to address how to successfully use the new PREM to achieve 1) routine data collection:2) linkage with local and national datasets 3) linguistic and cultural inclusion. Each workshop will generate recommendations and a framework for action.

The new PREM will be available via a website and we will produce two short videos (for professional and lay organisations) that explain the purpose, scope and availability of the new PREM. We will also disseminate findings through academic papers and presentations.