Study title

How do we support women with Rheumatic Disease during pre-conception, pregnancy and early parenting? Current practice and priority setting.

Principal / Lead Investigator
Co-Investigators
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?

Cardiff University

Summary 

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 would like to hear about the experiences of women with autoimmune rheumatic diseases who are thinking about starting a family, are pregnant or have young children.  

We will also be talking 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. 

The study will include:

  • An online survey to find out about women’s experience and what support they would value
  • In-depth interviews with women and health professionals
  • A stakeholder consensus event to talk about what we have found, generate ideas, and decide on what the priorities should be for research in this area
Public / patient involvement

Two PPI representatives have assisted with designing the research and engaging with patient groups. We have 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 will be a strong focus on PPI involvement at the STAR stakeholders event to be held in January 2017 so that they are 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 will provide 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 will also evaluate the currently available evidence in the research literature to identify effective interventions and gaps in the evidence. Finally, we will make recommendations for future research and will form Research Development Groups to take the highest priority ideas forward.

Does the study involve commercial partnership activity?

No

Does the study involve a methodological innovation? 

Yes. We are using novel participative methods with women during their narrative interviews to facilitate them in telling their story. This will include provision of resources to create a timeline, draw, write, and/or create a collage prior to the interview, which they can then use as a guide in talking to the interviewer about their experiences. The aim of this is to help us explore in depth sensitive issues, placing the interviewee of what they talk about and it what order. 

Funder

Wellcome Trust Institutional Strategic Support Fund  (Cardiff University) 

Total grant value

£20,000

Start date

1/9/2016

End date

31/1/17

Further information 

Study website: http://starfamilystudy.yolasite.com/about-the-study.php

Twitter: @STARFamilyStudy 

STAR Family Study Stakeholder Meeting, 25 January 2017 - post event summary

Outputs generated 

During 2017, we anticipate the following outputs from this project: report to funder, and manuscripts in peer-reviewed journals for each component of the project (i.e. systematic review, qualitative study, survey findings, nominal group technique findings).

We also anticipate forming a Research Development Group to bid for funding to develop and evaluate interventions based on the findings of this work.