Mental health in the first generation of adults with Fanconi anemia

Fanconi anemia (FA) is a rare genetic disorder involving bone marrow failure and cancer predisposition. Due to medical advances, people with FA are now living to adulthood and unmet mental health concerns are emerging. We aimed to explore mental health outcomes and protective and risk factors for the first time using a participatory research approach. Participants included 102 adults with FA from diverse national, ethnic, and racial backgrounds who completed validated measures of anxiety symptoms, depression symptoms, post-traumatic stress disorder (PTSD) symptoms, health-related quality of life, FA characteristics, personal factors, and social factors. When compared to population norms, adults with FA had significantly poorer health-related quality of life on all domains measured, including anxiety symptoms, depression symptoms, fatigue, physical function, sleep disturbance, social participation, pain, and cognitive function. Results showed 50% of participants had probable PTSD, 33% had probable anxiety, and 25% had probable depression. Hierarchical regressions indicating protective/risk factors for symptoms of anxiety, depression, and PTSD included stigma, disability self-efficacy, fatigue, concern with death and dying, and post-traumatic growth. Adults are at risk for symptoms of PTSD, anxiety, and depression. Just as people with FA should receive regular cancer screenings, they should also be screened for mental health symptoms.