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

Phillips, Rhiannon ORCID: https://orcid.org/0000-0002-4256-4598, Williams, Denitza ORCID: https://orcid.org/0000-0002-2874-9270, Bowen, Daniel, Morris, Delyth ORCID: https://orcid.org/0000-0001-8529-1270, Grant, Aimee ORCID: https://orcid.org/0000-0001-7205-5869, Pell, Bethan ORCID: https://orcid.org/0000-0002-0786-6339, Sanders, Julia ORCID: https://orcid.org/0000-0001-5712-9989, Taylor, Ann, Choy, Ernest ORCID: https://orcid.org/0000-0003-4459-8609 and Edwards, Adrian ORCID: https://orcid.org/0000-0002-6228-4446 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 , 75. 10.12688/wellcomeopenres.14658.1

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Abstract

Background: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.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Academic & Student Support Service Healthcare Sciences Medicine
Publisher:	F1000Research
ISSN:	2398-502X
Funders:	Cardiff University's Wellcome Trust Institutional Strategic and Health and Care Research Wales
Date of First Compliant Deposit:	21 June 2018
Date of Acceptance:	13 June 2018
Last Modified:	11 Oct 2023 17:25
URI:	https://orca.cardiff.ac.uk/id/eprint/112679

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