Unmet Needs in the Healthcare Experience of Women of Childbearing Age with Chronic Disease and Recommendations for Change

Research into the management of Chronic Disease (CD) during pregnancy is limited, with a lack of knowledge, evidence generation, and consensus on the medical outcomes for Women of Childbearing Age (WoCBA; 15-49 years) with CD. While some studies exist for specific CDs, there are few evaluations of the overlapping needs of WoCBA across multiple CDs. As such, we aimed to identify the common unmet needs for WoCBA with CD and generate recommendations for addressing them.

A social media listening study was conducted across Europe, the UK, and the USA and validated by a working group of patient representatives and healthcare professionals. Thematic analysis of the social media listening study revealed four areas of unmet need: (1) lack of patient support, (2) inadequate specialist discussions, (3) suboptimal coordination of the care pathway, and (4) need for empowering WoCBA with CD. Proposed solutions to enhance the patient experience included the co-creation of information resources, improved collaboration between specialist Healthcare Professionals (HCPs) as part of a multidisciplinary team, and the formation of peer support groups.