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

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.