Objectives To identify and prioritise important research questions for miscarriage.
Design A priority setting partnership using prospective surveys and consensus meetings following methods advocated by the James Lind Alliance.
Participants Women and those affected by miscarriage working alongside healthcare professionals.
Results In the initial survey, 1093 participants (932 women who have experienced miscarriage, 8 partners, 17 family members, friends or colleagues, 104 healthcare professionals and eight charitable organisations) submitted 3279 questions. A review of existing literature identified a further 64. Non-questions were removed, and the remaining questions were categorised and summarised into 58 questions. In an interim electronic survey, 2122 respondents chose their top 10 priorities from the 58 summary questions. The 25 highest ranked in the survey were prioritised at a final face-to-face workshop. In summary, the top 10 priorities were ranked as follows: research into preventative treatment, emotional aspects in general, investigation, relevance of pre-existing medical conditions, emotional support as a treatment, importance of lifestyle factors, importance of genetic and chromosomal causes, preconception tests, investigation after different numbers of miscarriage and male causal factors.
Conclusions These results should be the focus of future miscarriage research. Presently, studies are being conducted to address the top priority; however, many other priorities, especially psychological and emotional support, are less well researched areas. We hope our results will encourage both researchers and funders to focus on these priorities.
- reproductive medicine
- qualitative research
- statistics & research methods
- depression & mood disorders
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Contributors MP made the initial application to the JLA for a Miscarriage PSP, organised Steering Group meetings and teleconferences, contacted and enrolled partner organisations, designed the surveys, liaised with partner organisations throughout the PSP, conducted the literature reviews, wrote regular website updates and wrote the majority of the final manuscript. LM (JLA chair) chaired all meetings and teleconferences and organised the final workshop, which was led by Katherine Cowan, JLA facilitator. LM ensured compliance with JLA methodology throughout. MP, CB, JB and LR organised dates, venues and facilities for meetings and teleconferences, including the final workshop. MP drafted and circulated minutes of every meeting and teleconference. All authors classified the suggestions received from the first survey, and subsequently compiled the shortlist of 58 summary questions, with guidance from LM. All authors collectively drafted and approved the PSP protocol and terms or reference. All authors attended a majority of teleconferences. MP, JB, AC, BH-J, EO, JS and JT attended the final workshop; all authors collectively signed off on steering group decisions (as guided by LM). All authors actively promoted and disseminated both surveys to their respective partner organisations and to other stakeholder groups where relevant; JO designed the PSP logo and poster advertising for first survey. All authors made comments and suggestions for the final manuscript and approved it before submission.
Funding This study was funded by the University of Nottingham. It was also supported by the Royal College of Obstetricians and Gynaecologists, Royal College of Nursing, Tommy’s, The Miscarriage Association and Imperial College Healthcare NHS Trust who kindly provided venues for meetings free of charge.
Competing interests JB is chief executive of Tommy’s baby charity, which funds research to prevent and treat miscarriage. RS is chair of the Association of Early Pregnancy Units. BH-J is vice chair of the Miscarriage Association and represented them in the PSP. She works for Roche pharmaceuticals in clinical research, but Roche do not have any products or conduct research for miscarriage. LR is president of the Royal College of Obstetricians and Gynaecologists. AC is director of Tommy’s National Centre for Miscarriage Research at the University of Birmingham.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement No additional data are available.
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