Abstract Background/Aims Rheumatoid arthritis (RA) is a female-predominant disease. Existing patient engagement work and research on female health in RA has largely focused on pregnancy. Therefore, we explored female perspectives on research priorities in reproductive health and RA across the life course. Methods A survey was developed using Qualtrics survey software and distributed between May and June 2024, via social networks and patient forums. Females, resident in the UK, with a diagnosis of RA, were eligible to participate. The survey also included an invitation to attend an online focus group. Results Responses were received from 109 females with RA (47.6% had had RA for 10 years, 90.4% 40 years old). Respondents were asked which aspects of women’s health should be prioritised for future research: breastfeeding was least likely to be selected (44.2% wanted to know more), whilst menopause was the most popular (89.8% wanted to know more). However, whilst menopause scored highly in all age groups (92.3% of ≤ 39-year-olds and 89.3% of 40-year-olds), there were significant differences for most other topics (e.g., periods 92.1% ≤ 39 compared to 55.4% 40; contraception 92.3% vs 51.5%; infertility 76.9% vs 46.3%; pregnancy 84.6% vs 45.3%; breastfeeding 84.62% vs 35.9%; p 0.05 for all apart from infertility). Only 15.5% of respondents were aware that pregnancy complications such as pre-eclampsia and gestational diabetes could predict future maternal health, and in free text responses, not all were aware of the association between RA and female sex. Many asked for further investigation into lifestyle factors they perceived to influence RA (e.g., diet). Ten females with RA attended a subsequent focus group to discuss themes from the survey. There was strong support for a life-course approach to women’s health in RA, both in research and within the clinic itself. Many reported conflicting information on medication safety and the impact of pregnancy/menopause and perceived a lack of knowledge among healthcare professionals on the topic. Conclusion Findings align with published patient perspectives on female health in RA, reflect growing societal interest in the menopause, and indicate important knowledge gaps for patients, and by extension, their care providers, in managing reproductive health in RA. Disparities in response by age group highlight the importance of developing strategies to ensure representative responses from seldom heard from groups, including younger females with RA, when prioritising research agendas. We advocate greater research and education on female health issues in RA, extending beyond pregnancy. Disclosure B. Goulden: Honoraria; Speakers fees for a talk on pregnancy Honoraria from MGP as a coauthor on an educational review article in 2020 and speaker fees from UCB. Grants/research support; Unrestricted research grants from Union Chimique Belge (UCB).
Goulden et al. (Wed,) studied this question.