83rd Annual Scientific Meeting: Weathering the Storm in Biopsychosocial Science and Medicine: #1349/ Hearts At Risk: Weathering The Fear of Inherited Cardiac Conditions

Background Inherited cardiac conditions (ICC) are relatively rare, and potentially life-threatening. Their impact often extends beyond physical symptoms, provoking significant psychological distress. There is limited research on how individuals at risk for, or with a diagnosis of an ICC weather the fear and adjust to the psychological impact of their diagnosis. Intolerance of uncertainty (IU) has been linked to poor adjustment, while high tolerance co-occurs with acceptance and constructive support-seeking. We aimed to examine whether greater tolerance of uncertainty was associated with lower fear in men and women awaiting genetic test results. In addition, we used focus group data to explore how patients with asymptomatic or symptomatic ICC manage disease impact.
Methods In 2019, 41 patients (61% male, aged 45±14.3) referred to the Medical Genetics Department (UZ Brussels) for whole genome sequencing for ICC completed a survey, assessing intolerance of uncertainty (IU-12), generalized anxiety (GAD-7), and cardiac anxiety (CAQ-18). In 2023, focus groups were conducted with 15 Dutch patients (40% male, aged 51±14.5) diagnosed with either asymptomatic (34%) or symptomatic disease (channelopathies and cardiomyopathies). Thematic analysis was guided by the Coping Circumplex Model (theoretical framework).
Results Regression analyses revealed that in people awaiting their genetic test results greater tolerance of uncertainty was related to lower generalized anxiety (β =-.40, p=.009), and lower cardiac-related fear (β =.28, p=.078), but not to avoidance and attention. Associations were more pronounced in women (β =-.56/-.46, p<.05) than men (β =-.27/-.09, ns). Qualitative analysis supported and expanded these findings, revealing problem-focused and emotion-focused coping strategies mapping onto the dimensions of the Coping Circumplex Model. Positive emotional coping, particularly acceptance of the diagnosis, was most frequently mentioned. Patients also commonly reported information-seeking and combining problem solving with emotional support. Negative emotional coping strategies like denial, avoidance, and cynical hostility were also noted, particularly among those struggling to adjust.
Conclusion These results highlight the psychological complexity of living with (the threat of) ICC, showing both adaptive and maladaptive responses to uncertainty and fear.