Funding outcome

Female Bladder Pain Syndrome (FBPS) is a long lasting condition. It impacts up to 7% of women in the United States. Symptoms include bladder pain and the need to urinate often. Women with FBPS often have sleep issues, social isolation and anxiety. Education on health can help those affected by long-term illnesses cope. It can give knowledge, take away stress and guide choices. Also, it helps improve communication skills. Women suffering with FBPS often go online for information. Digital resources can be great tools for understanding and management. The internet is very accessible, but it can have false information. Resource development based on research can help these tools to be reliable. Also, they should be relatable. This is done by using the thoughts and feelings of women with FBPS during the creation process. Using lived experiences can increase the impact within the FBPS community. Our study goal is to create health educational tools with women with FBPS, for women with FBPS. The project has three phases. Last year we held focus groups with women with FBPS. We learned what patients want from an educational tool. This summer will be dedicated to phase 2. Here the research team will create an initial draft of an educational class and pamphlet. We will base this draft off of the opinions of FBPS patients shared in phase 1 focus groups. Drafted tools will be further refined by collaborating with an FBPS patient partner. They will review the drafted tools for tone, clarity, and inclusivity. Afterwards, these drafted tools will be presented to FBPS patients. Patient participants will evaluate these tools through focus groups. The last phase of the project will include a third focus group. Here, women with FBPS will judge our product against others currently available. This all leads to creating new and important educational tools for women with FBPS. Our goal is to make a reliable, relatable and relevant educational tool using a by patients for patients approach.