Awareness and Expectations Surrounding Family Planning and Pregnancy Among Danish Patients with Chronic Inflammatory Disease of the Skin or Joints: Results from an Online Survey

Background Patients with chronic inflammatory diseases (CIDs) may encounter challenges in their family planning journey. Here, we report on the access to family planning and pregnancy (FPP) information and the concerns among patients in Denmark with CIDs. Methods Patients aged 18–50 years with CIDs participated in an online survey. Patients were recruited through patient advocacy groups and were asked to report information on their diagnosis, concerns related to FPP and perceptions of access to FPP information. Descriptive statistics were applied. Results Of the eligible respondents, 368 had rheumatological diagnoses (rheumatoid arthritis, psoriatic arthritis, juvenile idiopathic arthritis or axial spondyloarthritis; mean age 40 years; 83% women, 17% men) and 95 had dermatological diagnoses (psoriasis or psoriatic arthritis; mean age 38 years; 67% women, 33% men). Approximately 70% of all patients reported seeking FPP information from patient advocacy groups; 57% of both cohorts used the internet as information sources; and 73% and 42% of rheumatological and dermatological cohorts used their hospital and specialist doctor, respectively. Despite this, 58% and 67% of patients with rheumatological and dermatological diagnoses reported limited or no access to FPP information, with > 70% of dermatological patients of early/mid-reproductive age reporting a lack of access to this information. Overall, 68% of patients with rheumatological and 73% with dermatological diagnoses had biological children, amongst whom 24% and 18%, respectively, indicated their disease affected the number of children they ultimately decided to have. The most frequent FPP concerns among patients who did not want any/more biological children were disease worsening, heredity and taking care of the child. Conclusions Despite awareness of available sources of FPP information, patients expressed experiencing a feeling of limited access to information and having concerns that affect key decisions regarding FPP. The results of this survey highlight a need for improved and more standardised FPP information for patients with CIDs in Denmark.