Influential Factors for Disclosing a Tuberous Sclerosis Complex Diagnosis to Romantic Partners

Tuberous sclerosis complex (TSC) is a genetic condition characterized by multiorgan tumor predisposition. Owing to the variability, heritability, and severity of the condition, individuals with TSC may face psychosocial challenges within romantic relationships including disclosing their diagnosis to romantic partners. Despite disclosure being explored in other genetic conditions, this area has not yet been explored in the TSC community, which faces unique challenges in overall health and quality of life.

This study surveyed independent adults with TSC regarding demographics, disclosure and nondisclosure factors, relationship and disclosure experiences, TSC features, and Brief-Illness Perception Questionnaire scores. The study aimed to identify patterns of diagnosis disclosure and assess factors considered in deciding when or whether to disclose, to increase understanding among clinicians and the community to provide better support.

As the number of relationships increased, both the probability of disclosure to all partners (P < 0.001) and the amount of time to disclose decreased (P = 0.007). Ethical obligation was the most heavily agreed-upon disclosure factor (81%), whereas fear of rejection was the most heavily agreed-upon nondisclosure factor (69%). Overall, 81% of participants considered disclosure to be challenging, 64% considered TSC to affect their desire to date, while 70% considered TSC to be a barrier to dating.

These findings highlight a need for facilitated discussion and psychosocial support for individuals with TSC in the realm of disclosure within romantic relationships. Such resources may increase support, positively impact disease management, and improve quality of life for the TSC community.