How do we support women with Rheumatic Disease during pre-conception, pregnancy and early parenting? Current practice and priority setting.
Principal / Lead Investigator
- Dr Rhiannon Phillips (PRIME, Cardiff University)
- Prof Adrian Edwards (PRIME, Cardiff University),
- Dr Aimee Grant (Cardiff University),
- Prof Ernest Choy (Cardiff University),
- Dr Ann Taylor (Cardiff University),
- Dr Denitza Williams (Cardiff University),
- Daniel Bowen (Cardiff University),
- Bethan Pell (Cardiff University),
- Dr Julia Sanders (Cardiff University)
Type of study
Seed-corn funding: Systematic review, qualitative interviews with women and health care professionals, stakeholder consensus exercise using nominal group technique.
Who is the study sponsor?
Autoimmune rheumatic diseases include a range of inflammatory conditions that can affect the moving parts of the body such as joints and muscles. These include Rheumatoid Arthritis, Lupus, vasculitis and various types of inflammatory arthritis. People with these conditions would normally be under the care of a rheumatologist.
Autoimmune rheumatic diseases can affect women during their childbearing years. This raises a lot of important issues around the information and support that women have in relation to starting a family. This might be about deciding on whether to have children, when the best time is to start a family, what happens if women have difficulties with starting a family, what medications are safe to use during pregnancy and breastfeeding, and how to manage symptoms like pain and fatigue during this time.
We found out about the experiences of women with autoimmune rheumatic diseases who were thinking about starting a family, are pregnant or have young children.
We also talked to a range of health professionals about the care and support that women receive during this stage in their lives.
This will help us to understand what information and support women would like during this time.
Public / patient involvement
Two PPI representatives assisted with designing the research and engaging with patient groups. We also established an online PPI group for women with chronic pain who are advising us on research ideas for improving outcomes for women who have non-obstertric chronic pain complaints during pregnancy. There was a strong focus on PPI involvement at the STAR stakeholders held in January 2017 so that they were placed on an equal footing with the health professionals in identifying research priorities in this area.
How could this research potentially benefit patients?
This study has provided valuable data on the information needs, support needs, and quality of life of women with autoimmune rheumatic diseases who are planning a pregnancy, pregnant or have young children. We will consult with stakeholders to map out unmet needs and prioritise research questions. We also evaluated the currently available evidence in the research literature to identify effective interventions and gaps in the evidence. Finally, we have made recommendations for future research and have formed a Research Development Groups to take the highest priority ideas forward.
Does the study involve commercial partnership activity?
Does the study involve a methodological innovation?
Yes. We used a novel participative methods with women during their narrative interviews to facilitate them in telling their story. This includes provision of resources to create a timeline, draw, write, and/or create a collage prior to the interview, which they then used as a guide in talking to the interviewer about their experiences. The aim of this was to help us explore in depth sensitive issues, placing the interviewee of what they talk about and it what order.
Wellcome Trust Institutional Strategic Support Fund (Cardiff University)
Total grant value
- Study website: http://starfamilystudy.yolasite.com/about-the-study.php
- Twitter: @STARFamilyStudy
- STAR Family Study Stakeholder Meeting, 25 January 2017 - post event summary
- Phillips R, Pell B, Grant A, Bowen D, Sanders J, Taylor A, Edwards A, Choy E, Williams D. Identifying the unmet information and support needs of women with autoimmune rheumatic diseases during pregnancy planning, pregnancy and early parenting: mixed-methods study. BMC Rheumatology (2018) 2:21 https://doi.org/10.1186/s41927-018-0029-4
- Phillips R, Williams D, Bowen D, Morris D, Grant A, Pell B, Sanders J, Taylor A, Choy E, Edwards A. 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 [version 1; peer review: 2 approved]. Wellcome Open Res 2018, 3:75 (https://doi.org/10.12688/wellcomeopenres.14658.1)
Blog post by study manager Bethan Pell: Visual Timeline Interviews Over The Telephone: Findings From The STAR Family Study