Objective
To develop a caesarean birth core information set. Caesareans are the most common surgery performed in many countries. Women need information for informed decision-making and consent. Core information sets (CISs) provide baseline information, agreed upon by parents and clinicians, for discussion before a procedure.
Design
Two-phase consensus study using modified Delphi.
Setting
United Kingdom, 2024.
Sample
People planning a pregnancy/currently pregnant/new parents and maternity professionals.
Methods
Phase 1: Long-list of information points identified from 273 systematic reviews, 50 patient leaflets, three pre-existing qualitative studies and a stakeholder survey (n?=?230); Operationalised into a Delphi questionnaire comprising 11 information points with 108 items. Phase 2: Think-aloud interviews (n?=?9) informed questionnaire restructure into information about planned caesarean birth, unplanned caesarean birth (within 72?h) and emergency caesarean birth (EMCB; =?30?min), followed by two-round Delphi survey and consensus meetings.
Results
N?=?360 participated in the Delphi survey Round 1. All items were carried forward, and three were added for Round 2 (n?=?188/56.4% attrition rate). From Round 2, one item was removed, 73 included and 37 items no-consensus. Free-text responses identified an unmet need for a postnatal EMCB-CIS. Over four meetings (n?=?36) consensus was reached for an antenatal-caesarean-birth-CIS (14 points), EMCB-CIS (5 points) and a postnatal EMCB-CIS (12 points).
Conclusions
This study has established three caesarean birth CISs to support informed decision-making discussions between women and clinicians: (1) an antenatal CIS for planned and unplanned caesareans when there is time for discussion in clinic; (2) a one-page CIS for emergency caesarean birth (within 30?min) when there is little time for discussion; (3) and a postnatal CIS for use after an unplanned caesarean birth before hospital discharge.
Carol Kingdon, Ben Greenfield, Mahmoud Aljubeh, Eve Bunni, Alexandra Hunt, Vicky Bradley, Caroline Cunningham, Siobhan Holt, Andrew Demetri, Christy Burden, Joanna Ficquet, Elena Otero-Romero, William Parry Smith, Mairead Black, Fiona Bradley, Amy Elsmore, Jenna Frizelle, Tabitha Jones, Abi Merriel
Disease Category: Pregnancy & childbirth
Disease Name: Caesarean Section
Age Range: 16 - 65
Sex: Female
Nature of Intervention: Surgery
- Charities
- Clinical experts
- Families
- Patient/ support group representatives
- Researchers
- Service providers
- Service users
- Core information set
- Consensus meeting
- Delphi process
- Interview
- Survey
- Systematic review
1) scoping review of patient information leaflets and systematic reviews
2) secondary analysis of existing interviews and focus groups about birth
3) online survey of parents, pregnant women and stakeholders for information points
4) development of the long list
5) development of the Delphi Survey (research team and PPI team)
6) think aloud interviews
7) launch of 2 round Delphi survey
8) consensus meetings with PPI representatives and stakeholders.