Research on Preterm Birth Prevention: The Participant Experience

Research on spontaneous preterm birth (sPTB) is deeply important to the patients it serves. There is an absence of the patient's voice on the experience of research participation.

This prospective mixed-method study examined the experience of participants of a preterm birth research study. Recruited patients had significant risk factors for spontaneous preterm birth and were offered enrolment in a preterm birth study. Participants enrolled in early pregnancy and continued participation until 6 weeks postpartum. At the postnatal visit, they completed a survey on their experience of participation. Responses were analysed using reflexive thematic analysis.

In total, 112 women completed the study participation survey. Motivations for recruitment included the altruistic goal of protecting other women and families from spontaneous preterm birth (54.5%, 61/112) and interest in the scientific rationale of the study rooted in the microbiome (10.7%, 12/112). 91.0% enjoyed participating in the study. Participant satisfaction with enrolment related to perception of improved clinical care (26.8%, 30/112), continuity of care with the research team (20.5%, 23/112), perceived improved clinical outcome they attributed to study participation (9.8%, 11/112) and symptom benefit from the intervention (1/8%, 2/112).

Women at risk of spontaneous preterm birth were motivated for study participation by the goal of protecting other women and families from preterm birth. Participant satisfaction related to perceived improved clinical care and continuity of care. Participants had a strong appetite for results dissemination. These findings highlight the willingness of patients to participate in research, even in the setting of a pregnancy at risk of preterm birth.