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

Launched by NATIONAL CANCER INSTITUTE (NCI) · Dec 19, 2024

Keywords

ClinConnect Summary

This clinical trial is studying the anxiety that people with Fanconi anemia (FA) experience when they undergo cancer screenings. FA is a rare genetic condition that increases the risk of various health issues and cancers, especially in young adults. The goal of this trial is to understand how frequent visits to doctors for cancer screening may affect the emotional well-being of individuals with FA.

To participate in this study, you need to be at least 18 years old, have a diagnosis of Fanconi anemia, and be enrolled in the FACSS study, which involves annual cancer screenings. If you join, an observer will be present during your routine FACSS visits, but they won't interact with you. They will simply take notes on things like your body language, any concerns you might express about screenings, and the overall environment of the clinic. This study aims to gather important information about your experiences, which can help improve the way healthcare providers support patients with FA in managing their anxiety.

Gender

ALL

Eligibility criteria

• * 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.