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dc.contributor.authorPhillips, Rhiannon
dc.contributor.authorWilliams, D.
dc.contributor.authorBowen, D.
dc.contributor.authorMorris, D.
dc.contributor.authorGrant, A.
dc.contributor.authorPell, B.
dc.contributor.authorSanders, J.
dc.contributor.authorTaylor, A.
dc.contributor.authorChoy, E.
dc.contributor.authorEdwards, A.
dc.identifier.citationPhillips, R., Williams, D., Bowen, D., Morris, D., Grant, A., Pell, B., Sanders, J., Taylor, A., Choy, E. and Edwards, A. (2018) 'Reaching a consensus on research priorities for supporting women with autoimmune rheumatic diseases during pre-conception, pregnancy and early parenting: a nominal group technique exercise with lay and professional stakeholders', Wellcome Open Research, 3.en_US
dc.descriptionArticle published in Wellcome Open Research available open access at
dc.description.abstractBackground:Women with autoimmune rheumatic diseases (ARDs) find it difficult to get information and support with family planning, pregnancy, and early parenting. A systematic approach to prioritising research is required to accelerate development and evaluation of interventions to meet the complex needs of this population. Methods:A Nominal Group Technique (NGT) exercise was carried out with lay and professional stakeholders (n=29). Stakeholders were prepared for debate through presentation of available evidence. Stakeholders completed three tasks to develop, individually rank, and reach consensus on research priorities: Task 1 – mapping challenges and services using visual timelines; Task 2 - identifying research topics; Task 3 - individually ranking research topics in priority order. Results of the ranking exercise were fed back to the group for comment. Results:The main themes emerging from Task 1 were the need for provision of information, multi-disciplinary care, and social and peer support. In Task 2, 15 research topics and 58 sub-topics were identified around addressing the challenges and gaps in care identified during Task 1. In Task 3, a consensus was reached on the ten research topics that should be given the highest priority. These were individually ranked, resulting in the following order of priorities (from 1 – highest to 10 – lowest): 1. Shared decision-making early in the care pathway; 2. Pre-conception counseling; 3. Information about medication use during pregnancy/breastfeeding; 4. Personalised care planning; 5. Support for partners/family members; 6. Information about local support/disease specific issues; 7. Shared decision-making across the care pathway; 8. Peer-support; 9. Social inequalities in care, and; 10. Guidance on holistic/alternative therapies. Conclusions:This systematic approach to identification of research priorities from a multi-disciplinary and lay perspective indicated that activities should focus on development and evaluation of interventions that increase patient involvement in clinical decision-making, multi-disciplinary models of care, and timely provision of information.en_US
dc.relation.ispartofseriesWellcome Open Research;
dc.titleReaching a consensus on research priorities for supporting women with autoimmune rheumatic diseases during pre-conception, pregnancy and early parenting: A Nominal Group Technique exercise with lay and professional stakeholdersen_US

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