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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.date.accessioned2019-10-07T08:45:13Z
dc.date.available2019-10-07T08:45:13Z
dc.date.issued2018-06-20
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.identifier.urihttp://hdl.handle.net/10369/10759
dc.descriptionArticle published in Wellcome Open Research available open access at https://doi.org/10.12688/wellcomeopenres.14658.1en_US
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.language.isoenen_US
dc.publisherF1000Researchen_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
dc.typeArticleen_US
dc.identifier.doihttps://doi.org/10.12688/wellcomeopenres.14658.1
dcterms.dateAccepted2018
rioxxterms.versionNAen_US


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