Outcome set: pregnancy with multiple conditions

01 August 2023

This study is about the development of a core outcome set for studies of pregnant women with multiple long-term conditions and is just one element of the MuM PreDiCT study. 

Mum PreDiCT are developing a project to study and improve maternity care for women who are also managing two or more long-term health conditions. These can be both physical conditions, such as diabetes and raised blood pressure, and mental health conditions such as depression and anxiety.

The research will consist of five projects.

What is this study about?

In research, we measure outcomes to find out whether a new intervention (e.g. a new medication) works. We also measure outcomes to find out how a health condition affects a person.

For example, we may want to know whether having 2 or more long-term conditions increases pregnant women / birthing people’s risk of premature birth (an outcome); or whether a new way of delivering maternity care may improve pregnant women / birthing people’s experience (an outcome).

Researchers may choose to measure different outcomes for their studies. However, this makes it harder for us to compare the results from different studies. 

In this study, researchers worked with stakeholders to agree on a set of outcomes that should be reported in all research. This standard list of outcomes is a core outcome set.

What did we do?

First, we looked at existing studies to see what types of outcomes have been measured by researchers in the past. However, these are outcomes chosen by researchers. So we held focus groups find out what outcomes matter to people with lived experience of 2 or more long-term conditions and pregnancy, their partners, family and health care professionals. 

We then use this long list of potential outcomes to design an online survey. We asked stakeholders to rate how important are these outcomes. This helped us to narrow down the list of outcomes. We then held online meetings with stakeholders and agreed on the final core outcome set.

Who did we involve?

Stakeholders include women / birthing people with 2 or more long-term physical or mental health conditions who have been pregnant or planning a pregnancy; their partners, family or carers; and their health and social care professionals; and researchers.

What was the result?

Stakeholders agreed on 11 core outcomes: 5 maternal outcomes and 6 child outcomes.

The maternal outcomes are: maternal death, severe maternal morbidity (severe pregnancy complications), quality and experience of care, change in existing long-term conditions (physical & mental), development of new mental health conditions. 

The child outcomes are: survival of baby, gestational age at birth, birth weight, quality of life, neurodevelopmental conditions / impairments, separation of mother from baby for health care needs.

What next?

Researchers need to work with stakeholders to agree on how to define and measure these outcomes. The core outcome set will guide future studies of pregnant women / birthing people with 2 or more long-term conditions.

Thank you

We would like to thank the charities and organisations for helping us with study recruitment. We would also like to thank all our participants.

Reference

Lee, S.I., Hanley, S., Vowles, Z. et al. The development of a core outcome set for studies of pregnant women with multimorbidity. BMC Med 21, 314 (2023). https://doi.org/10.1186/s12916-023-03013-3