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

Study Description:

This study will explore the experience and management of screening related anxiety in Fanconi Anemia (FA) among participants in the Fanconi Anemia Cancer Screening Study (FACSS) protocol (NIH IRB #:001109). Knowledge generated from this study will improve understanding of the experience and management of cancer screening-related anxiety in the context of complex, rare disease, while providing much-needed information about the health experiences and challenges within the FA community.

Objectives:

To collect ethnographic observational field notes to explore the nature of cancer screening-related anxiety experienced by participants in the FACSS screening study at the NIH clinical center.

• INCLUSION CRITERIA:

Participants enrolled in the FACSS protocol who are 18 years of age or older are eligible for inclusion in this study. Clinical visits eligible for ethnographic observation are limited to initial visits (medical history and physical examination) and/or return of results visits happening in the context of their first visit to the NIH Clinical Center for the FACSS protocol and/or annual return visits.

To be eligible, the following requirements must be met:

• Ability for the participant to speak, read, and/or write in English to understand and agree to a verbal consent.
• Participants must have a diagnosis of FA.
• Participants must be 18 years of age or older.

Exclusion criteria

• Individuals who do not meet eligibility criteria.
• Subjects who declined or opted out of allowing their data to be used for future research.
• Subjects who orally declined to have Dr. Emily Pearce shadow their clinical center visits.
• No other exclusionary criteria apply.