Op0307-Pare what Are the Unmet Needs of Pregnant Patients Diagnosed With Inflammatory Rheumatic Diseases Receiving Care in a Highly Specialized Reproductive Rheumatology Center? The Results of the Capri Study

Abstract

BackgroundInflammatory rheumatic diseases (RD) often affects women in their childbearing years. Despite extensive counselling, we noticed that in RD patients there is an increasing need of more information concerning pregnancy and parenting. This suggests that there are still unexplored information needs regarding pregnancy and parenting in women with RD. To our knowledge, there are no studies exploring these unidentified information needs.ObjectivesThe aim of this study was to evaluate the unmet needs of women diagnosed with RD that received highly specialized care in a tertiary Reproductive Rheumatology center.MethodsWomen (≥18 years) diagnosed with RD (such as rheumatoid arthritis, spondyloarthritis, psoriatic arthritis or juvenile idiopathic arthritis), who were followed-up by the Reproductive Rheumatology team from the Department of Rheumatology of the Erasmus University Medical Center were invited to complete an online questionnaire. The questionnaire was divided into different sections: pre-conception, pregnancy, post-partum, parenthood and support received/needed by informal caregivers such as family, friends, neighbors etc. The questions were related to the support and information provided by the team, problems experienced, unmet needs and the patient’s general characteristics. The patients were offered the possibility to give additional remarks (free text). Descriptive statistics were used to represent the outcomes.ResultsFrom a total of 181 women who were invited to fill out the online questionnaire, 95 women (52%) completed the questionnaire. It concerns women in the age between 22 and 45 (mean of 33yrs), with a RD, who received their first (n=56), second, or third baby between 2019 and 2021. Overall, the care of the rheumatology team was highly rated by the women (satisfaction score of 88 (scale 0-100) for the rheumatologist and 92 (scale 0-100) for the rheumatology nurses) (Table 1). 18 Women (19%) experienced any problem during the period around their delivery and/or post-partum. Six women indicated that their problems persisted. A lack of mental health support regarding disease coping (4 out 6) was the most frequently mentioned persisting problem. In addition 2 out of 6 women indicated a need for additional communication with the rheumatology team regarding information, indication and adjustment of their medication between the regular outpatient clinic visits.ConclusionThe care provided by the Reproductive Rheumatology team was highly rated by the majority of the women. Nevertheless, the following unmet needs were identified: a) mental health support regarding disease coping and, b) the opportunity to communicate about medication beyond the regular outpatient visits.Despite a very high satisfaction rate of patients treated by the Reproductive Rheumatology team some of them experience health problems that remain unsolved. This will help us to improve our patient-centered care as we aim at matching our care as appropriately as possible to patient needs. In the future, we want to identify the characteristics of the women who need more information, more mental support and, more contact between the regular consults, so we can help them solve their problems and fill their needs.REFERENCES:NIL.Acknowledgements:NIL.Disclosure of InterestsNone Declared.