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

For which topic were research priorities identified?

women with autoimmune rheumatic diseases

In which location was the research priority setting conducted?

Europe - United Kingdom

Why was it conducted at all?

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.

What was the objective?

to reach a consensus on the areas of uncertainty that most require investigation to guide clinicians and researchers working in this field

What was the outcome?

a ranking list of 10 research topics

How long did the research prioritization take?

January 2017

Which methods were used to identify research priorities?

workshop

How were the priorities for research identified exactly?

Step 1: workshop with nominal group technique: presentations on lived experiences of women in the UK who were considering pregnancy, pregnant, or had young children, presentation of findings of rapid literature review, small group discussions: mapping out women's journeys toward starting a family, identifying challenges, identifying gaps in care and support along the pathway, generating ideas on how the challenges women faced and the gaps in care might be addressed, generating list of research topics, these topics individually ranked by participants in order of priority, the 10 highest priority research topics were agreed by stakeholders

Which stakeholders took part?

Patients, researchers, and health professionals. 29 participants: 4 patients with ARDs, two general practitioners (one of whom had specialism in rheumatology), a consultant in pain medicine, 2 midwives, a pharmacist, two physiotherapists, a health visitor, an occupational therapist, a clinical psychologist, 10 researchers, 3 students, a government representative.

How were stakeholders recruited?

The workshop was advertised via the project social media feeds and website. In addition to the public adverts, health professionals, researchers and patient representatives in the research team's institutions and professional networks were purposively sampled.

Were stakeholders actively involved or did they just participate?

Stakeholders were mere participants of the research prioritization process; they were not actively involved in the process.