Priorities for research in miscarriage: a priority setting partnership between people affected by miscarriage and professionals following the James Lind Alliance methodology

Abstract

ObjectivesTo identify and prioritise important research questions for miscarriage.DesignA priority setting partnership using prospective surveys and consensus meetings following methods advocated by the James Lind Alliance.SettingUK.ParticipantsWomen and those affected by miscarriage working alongside healthcare professionals.ResultsIn 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.ConclusionsThese 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.

Identifying research priorities for digital technology in mental health care: results of the James Lind Alliance Priority Setting Partnership

“…The JLA have developed a step-by-step guide outlining the processes and methods involved in developing priority setting partnerships (PSP) to systematically identify and prioritise unanswered questions in health research. 28 These guidelines are well-established, can be adapted to meet the specific requirements of a PSP, and have been applied to more than 50 PSPs to date across many different health topics, including treatment uncertainties for acne, 29 research into miscarriage, 30 and to identify research priorities for depression, 31 bipolar disorder, dementia and schizophrenia. These JLA Guidelines were adhered to for this digital mental health PSP.…”

Research priority setting in women’s health: a systematic review

“…Seven research priority setting studies were identified. [8][9][10][11][12][13][14] An additional four research priority setting studies were identified in the James Lind Alliance database. [15][16][17][18] A further research priority setting study was identified through personal communication with the clinical lead.…”

“…19,20 Eight completed and four progressing research priority setting studies were included (Tables 1 and S1). [8][9][10][11][12][13][14][15][16][17][18][19] The PSP for infertility has established the top ten research uncertainties for male infertility, female and unexplained infertility, medically assisted reproduction, and ethics, access, and organisation of care, in a single initiative. 21 Four research priority setting studies have reported their full results in a peerreviewed publication.…”

“…21 Four research priority setting studies have reported their full results in a peerreviewed publication. 10,11,13,14 Three research priority setting studies were relevant to benign gynaecology and infertility, establishing research priorities for miscarriage, 14 infertility 21 and endometriosis. 8 Seven research priority setting studies were related to pregnancy and childbirth, including studies establishing research priorities for gestational diabetes, 11 preterm birth 12 and stillbirth.…”

Immunologic and rheumatologic causes and treatment of recurrent pregnancy loss: what is the evidence?

“…There is a distinct lack of efficacious therapeutic options because of failure of adequate stratification to distinguish these in published studies. Patient-led priority setting groups have highlighted effective interventions to prevent miscarriage as the highest priority in this area (5). This points to a need for a novel approach to therapeutic interventions and suggests the importance of ongoing exploration into immunological RPL.…”