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Priorities for research in miscarriage: a priority setting partnership between people affected by miscarriage and professionals following the James Lind Alliance methodology
  1. Matthew Prior1,
  2. Carmel Bagness2,
  3. Jane Brewin3,
  4. Arri Coomarasamy4,
  5. Lucy Easthope5,
  6. Barbara Hepworth-Jones6,
  7. Kim Hinshaw7,
  8. Emily O'Toole8,
  9. Julie Orford8,
  10. Lesley Regan9,
  11. Nick Raine-Fenning10,
  12. Judy Shakespeare11,
  13. Rachel Small12,
  14. Jim Thornton13,
  15. Leanne Metcalf14
  1. 1 Department of Child Health Obstetrics and Gynaecology, University of Nottingham, Nottingham, UK
  2. 2 Royal College of Nursing, London, UK
  3. 3 Tommy's, Nichols House, London, UK
  4. 4 School of Clinical and Experimental Medicine, University of Birmingham, Edgbaston, UK
  5. 5 University of Lincoln Law School, Lincoln, Lincolnshire, UK
  6. 6 The Miscarriage Association, Wakefield, UK
  7. 7 Department of Obstetrician and Gynaecologist, Sunderland Royal Hospital, Sunderland, UK
  8. 8 Royal College of Obstetricians and Gynaecologists Women's Voices Involvement Panel, London, UK
  9. 9 Royal College of Obstetricians and Gynaecologists, London, UK
  10. 10 Division of Obstetrics & Gynaecology, School of Clinical Sciences, University of Nottingham, Nottingham, Nottinghamshire, UK
  11. 11 Retired, Oxford, UK
  12. 12 Department of Gynaecology, Heart of England NHS Foundation Trust, Birmingham, UK
  13. 13 University of Nottingham, Nottingham, UK
  14. 14 The James Lind Alliance, National Institute for Health Research Evaluation, Trials and Studies Coordinating Centre, Southampton, UK
  1. Correspondence to Dr Matthew Prior; matt{at}matthewprior.com

Abstract

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.

Setting UK.

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
  • ultrasound
  • depression & mood disorders

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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Footnotes

  • 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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