Research priorities and potential methodologies to inform care in subsequent pregnancies following stillbirth: a web-based survey of healthcare professionals, researchers and advocates

Abstract

ObjectivesTo identify research priorities and explore potential methodologies to inform care in subsequent pregnancies following a stillbirth.DesignWeb-based survey by invitation.ParticipantsMultidisciplinary panel of 79 individuals involved in stillbirth research, clinical practice and/or advocacy from the international stillbirth research community (response rate=64%).Outcome measuresImportance of 16 candidate research topics and perceived utility and appropriateness of randomised controlled trial (RCT) methodology for the evaluation of four pertinent interventions: (1) medical therapies for placental dysfunction (eg, antiplatelet agents); (2) additional antepartum fetal surveillance (eg, ultrasound scans); (3) early planned birth from 37 weeks’ gestation and (4) different forms of psychosocial support for parents and families.ResultsCandidate research topics that were rated as ‘important and urgent’ by the greatest proportion of participants were: medical therapies for placental dysfunction (81%); additional antepartum fetal surveillance (80%); the development of a core outcomes dataset for stillbirth research (79%); targeted antenatal interventions for women who have risk factors (79%) and calculating the risk of recurrent stillbirth according to specific causes of index stillbirth (79%). Whether RCT methodologies were considered appropriate for the four selected interventions varied depending on the criterion being assessed. For example, while 72% of respondents felt that RCTs were ‘the best way’ to evaluate medical therapies for placental dysfunction, fewer respondents (63%) deemed RCTs ethical in this context, and approximately only half (52%) felt that such RCTs were feasible. There was considerably less support for RCT methodology for the evaluation of different forms of psychosocial support, which was reinforced by free-text comments.ConclusionsFive priority research topics to inform care in pregnancies after stillbirth were identified. There was support for RCTs in this area, but the panel remained divided on the ethics and feasibility of such trials. Engagement with parents and families is a critical next step.

Using Social Media to Engage Knowledge Users in Health Research Priority Setting: Scoping Review

“…Table 2 shows the particular social media strategies used to enhance knowledge user engagement in research priority-setting exercises grouped by platform. Of studies using email as their primary social media platform [ 12 , 16 , 17 , 19 , 23 , 24 , 27 , 29 , 30 , 33 ] study teams emailed messages with embedded research prioritization survey links (including to researchers’ existing mailing lists) and integrated tell a friend tool in emails to prompt recipients to invite colleagues to participate. Facebook-specific methods to engage stakeholders included embedding survey links within Facebook posts, using the platform’s boosting feature (ie, paid advertisements), and hiring a Facebook advertising specialist.…”

“…The direct effect of social media campaigns in securing stakeholder participation in research priority-setting was assessed as the (1) number of survey responses [ 12 , 14 , 15 , 20 , 33 ], (2) number of survey responses within a set period [ 14 , 15 , 20 , 33 ], (3) proportion of surveys fully completed [ 21 ], and (4) number of visits to external survey administration sites [ 14 , 15 ].…”

Measures of anxiety, depression and stress in the antenatal and perinatal period following a stillbirth or neonatal death: a multicentre cohort study

“…A priority setting exercise of 79 professionals involved in stillbirth research reported that targeted interventions for pregnancy after loss and specialist clinical services such as PALCs were identified as urgent and important by 79% and 73% of respondents respectively. Importantly, fewer 50% of respondents of respondents felt that randomised controlled studies were the best way to evaluate psychological interventions, or were likely to be feasible [ 29 ]. Nevertheless, models of care in pregnancy after loss need to be developed and evaluated in order that effective care can be delivered to women and their families in these pregnancies.…”

Women’s Experiences in the Antenatal and Perinatal Period Following a Stillbirth or Neonatal Death: A Multicentre Cohort Study

“…Provision of specialist care in a dedicated clinical service was viewed favourably, but comparative studies are required to determine whether this model is superior to routine high-risk care and to identify which components of the dedicated service are valued. A recent prioritisation study found 73% of respondents indicated that this was an urgent and important research question to be addressed [36]. Further studies are also needed to understand partners' and other family member's experiences of pregnancy/ies after stillbirth to appreciate which aspects of care and support are bene cial in a future pregnancy.…”