Understanding and Managing Anxiety During Cancer Screening in Adults with Fanconi Anemia

What this Trial Is About

Fanconi anemia FA is a rare inherited cancer syndrome that causes various physical problems, including small head and eyes and internal organ issues in children. Young adults with FA have a higher risk of developing cancer and often need multiple visits with different doctors for cancer screening, which can lead to anxiety. This study aims to better understand the anxiety related to cancer screenings experienced by people with FA, especially within the context of complex, rare disease and the FA community. The study observes adults aged 18 and older who are enrolled in the Fanconi Anemia Cancer Screening Study FACSS protocol. All data collection occurs during routine FACSS visits, with no additional visits required. An observer will be present during FACSS visits to note participant behaviors, emotions, and environmental factors, including body language, worries about screening, comments indicating anxiety or depression, clinical setting details, accessibility, social support, and motivation to participate. Participants will have their FACSS visit notes and medical records reviewed dating back to December 2024. The observer will not interact with participants after a polite introduction. Researchers will examine cancer screening-related anxiety using ethnographic field notes taken during visits. This study may help improve understanding of cancer screening anxiety and management for people with FA. Participation involves routine FACSS visits and observation, with no additional procedures or interventions.

Experience and Management of Cancer Screening-Related Anxiety in Fanconi Anemia