Dataset Information

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

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.

SUBMITTER: Prior M

PROVIDER: S-EPMC5629698 | biostudies-literature | 2017 Aug

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

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

Prior Matthew M Bagness Carmel C Brewin Jane J Coomarasamy Arri A Easthope Lucy L Hepworth-Jones Barbara B Hinshaw Kim K O'Toole Emily E Orford Julie J Regan Lesley L Raine-Fenning Nick N Shakespeare Judy J Small Rachel R Thornton Jim J Metcalf Leanne L

BMJ open 20170823 8

<h4>Objectives</h4>To identify and prioritise important research questions for miscarriage.<h4>Design</h4>A priority setting partnership using prospective surveys and consensus meetings following methods advocated by the James Lind Alliance.<h4>Setting</h4>UK.<h4>Participants</h4>Women and those affected by miscarriage working alongside healthcare professionals.<h4>Results</h4>In the initial survey, 1093 participants (932 women who have experienced miscarriage, 8 partners, 17 family members, fri ...[more]

PMID: 28838896

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Project description:ObjectivesTo conduct a UK-wide survey of young people who have experienced cancer, carers and professionals, to identify and prioritise research questions to inform decisions of research funders and support the case for research with this unique cancer population.DesignJames Lind Alliance Priority Setting Partnership.SettingUK health service and community.MethodsA steering group oversaw the initiative and partner organisations were recruited. Unanswered questions were collected in an online survey. Evidence searching verified uncertainties. An interim survey was used to rank questions prior to a final prioritisation workshop.ParticipantsYoung people aged 13-24 years with a current or previous cancer diagnosis, their families, friends, partners and professionals who work with this population.ResultsTwo hundred and ninety-two respondents submitted 855 potential questions. Following a refining process and removal of 'out of scope' questions, 208 unique questions remained. Systematic evidence checking identified seven answered questions and 16 were the subject of ongoing studies. The interim survey was completed by 174 participants. The top 30 questions were prioritised at a workshop attended by 25 young people, parents and multidisciplinary professionals. The top three priorities are: (1) What psychological support package improves psychological well-being, social functioning and mental health during and after treatment? (2) What interventions, including self-care, can reduce or reverse adverse short-term and long-term effects of cancer treatment? (3) What are the best strategies to improve access to clinical trials? The remaining questions reflect the complete cancer pathway: new therapies, life after cancer, support, education/employment, relapse and end-of-life care.ConclusionsWe have identified shared research priorities for young people with cancer using a rigorous, person-centred approach involving stakeholders typically not involved in setting the research agenda. The breadth of priorities suggest future research should focus on holistic and psychosocial care delivery as well as traditional drug/biology research.

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Dataset Information

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

Objectives

Design

Setting

Participants

Results

Conclusions

Publications

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

Similar Datasets

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