The rates of mood and anxiety symptoms and disorders are very high in tuberous sclerosis complex (TSC), often arising in adolescence or adulthood. Difficulties in this cluster are often identified late or not at all. In those with developmental or intellectual disabilities, the identification of mood and anxiety difficulties may be even more difficult. Even though there is no evidence base within TSC for the treatment of depressive and anxiety disorders, there is an encouraging evidence base in the general population that indicates the use and effectiveness of non-pharmacological and pharmacological strategies.

The consensus panel recommends the following:

Mood/anxiety cluster recommendations

  • Mood and anxiety symptoms should be monitored in all children and adults with TSC to ensure early detection and treatment when necessary.
  • Efforts should be made to look for mood and anxiety symptoms in those with intellectual and other neurodevelopmental disabilities where signs of depressed mood or anxiety may be different (e.g. withdrawal from social interaction, loss of interest in previously enjoyed activities, anorexia or increased dysregulated behaviours).
  • Mood and anxiety symptoms may be the consequence of underlying physical health problems or their treatments (e.g. seizures and anti-seizure medications, renal failure or chronic pain), and these may require specific management.
  • Mood and anxiety should be treated using evidence-based approaches recommended in the general population. For mild to moderate mood and anxiety disorders, non-pharmacological approaches are recommended first, such as physical activity, cognitive behavioral therapy, or other nonverbal therapies (psychomotor therapy, creative therapy, mindfulness). When these non-pharmacological approaches are insufficient, or in the case of severe mood and anxiety disorders, these strategies should be combined with an evidence-based pharmacological treatment, from a qualified mental health professional.
  • As everyone with TSC is unique and different, mood and anxiety disorders should be managed using a personalized approach.
  • Further research is needed to generate evidence for identification and treatment of mood and anxiety difficulties and disorders specific to TSC.
Reviewed by Ashley Pounders, MSN, FNP-C, Director of Medical Affairs, TSC Alliance, November 2023.

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