Women- and clinician- important outcomes and priorities regarding vasa praevia: An international qualitative study to inform development of a core outcome set

Nasrin Javid; Natasha Donnolley; John Kingdom; Rachel Dadouch; Rohan D'Souza

doi:10.1016/j.wombi.2024.101614

Women- and clinician- important outcomes and priorities regarding vasa praevia: An international qualitative study to inform development of a core outcome set

Women Birth. 2024 Apr 25;37(4):101614. doi: 10.1016/j.wombi.2024.101614. Online ahead of print.

Authors

Nasrin Javid¹, Natasha Donnolley², John Kingdom³, Rachel Dadouch³, Rohan D'Souza⁴

Affiliations

¹ Faculty of Health, University of Technology Sydney, 235-253, Jones Street, Ultimo, Sydney, New South Wales 2007, Australia; Sydney Institute for Women, Children, and their Families, Sydney, 83 Missenden Road, Camperdown, New South Wales 2050, Australia. Electronic address: Nasrin.Javid@uts.edu.au.
² Faculty of Medicine and Health, University of New South Wales, Sydney, Botany street, Kensington, New South Wales 2033, Australia.
³ Division of Maternal and Fetal Medicine, Department of Obstetrics & Gynaecology, Mount Sinai Hospital, University of Toronto, Toronto, 600 University Avenue, Ontario, Toronto M5G 1×5, Canada.
⁴ Division of Maternal and Fetal Medicine, Department of Obstetrics & Gynaecology, Mount Sinai Hospital, University of Toronto, Toronto, 600 University Avenue, Ontario, Toronto M5G 1×5, Canada; Departments of Obstetrics & Gynaecology and Health Research Methods, Evidence and Impact, McMaster University, Hamilton, 1280 Main St. West, Hamilton, Ontario L8S 4K1, Canada.

PMID: 38669723
DOI: 10.1016/j.wombi.2024.101614

Abstract

Background: Many studies have reported interventions for women with vasa praevia to improve perinatal outcomes. However, which outcomes are important for women remains unclear.

Aim: To explore what outcomes are important for women with lived experience of vasa praevia and why, in order to inform the development of a core outcome set for studies on vasa praevia.

Methods: An international qualitative study was conducted with women and clinicians. Semi-structured interviews were audio-recorded, transcribed, and analysed taking an inductive approach.

Findings: Eighteen women and six clinicians (four obstetricians, two midwives) from the United States, United Kingdom, Canada, and Australia were interviewed. Participants identified 47 patient-important outcomes and experience measures, which were grouped under five themes: baby's survival and health, mother's physical health, mother's mental and emotional health, quality of health care delivery, and resource use and cost. While survival of the baby without short- and long-term morbidity remained the main priority, other important considerations included the physical, mental, social and financial wellbeing of families, future access to antenatal screening and diagnosis, information on management options and consequences, continuity of care, clear and effective communication, peer support and the appreciation of individual variations to risk tolerance, values and resource availability.

Conclusion: We have identified patient-important outcomes and experience measures that have been directly fed into the development of a core outcome set on vasa previa. Incorporating these considerations into both clinical practice and future research studies has the potential to improve outcomes and experiences for women with vasa praevia.

Keywords: Continuity of care; High-risk pregnancy; Patient-reported outcomes; Premature birth; Vasa previa; Woman-centred care.