Table 6 Mood/anxiety cluster recommendations

MA1. Mood and anxiety symptoms should be monitored in all children and adults with TSC to ensure early detection and treatment when necessary. The rates of mood and anxiety symptoms are very high in individuals with TSC (up to 56% overall). Mood and anxiety symptoms can emerge very early in development but are more commonly seen in adolescents and adults with TSC. For this reason, regular assessment of mood and anxiety symptoms should be performed to identify emerging difficulties. It may be appropriate to refer to a psychiatrist for formal assessment and diagnosis of a mood or anxiety disorder if symptoms are persistent, severe, and impairing functioning in the individual

MA2. Mood and anxiety disorders are highly underdiagnosed and under-treated in TSC, particularly in individuals with intellectual and other neurodevelopmental disabilities. Mood and anxiety disorders are often under-diagnosed in individuals with TSC, particularly in those with intellectual disability as it may be difficult for them to communicate such difficulties appropriately. These difficulties may present differently in individuals with intellectual and developmental disabilities (e.g., as a change in typical behaviors, withdrawal from activities, or reduced enjoyment of previously motivating activities). This may result in under-identification and under-treatment of these disorders. It is therefore important for caregivers and healthcare providers to be vigilant in inquiring about mood and anxiety symptoms in all individuals with TSC to ensure early identification of such concerns

MA3. Mood and anxiety symptoms may present as manifestations of physical health disorders and/or as adverse effects of prescribed medications. Individuals with TSC often have epilepsy and other physical health disorders. The role of seizures, other health conditions, and prescribed medications should therefore be considered as possible contributors to the mood/anxiety profile of an individual during clinical evaluation

MA4. Mood and anxiety should be treated using evidence-based approaches recommended in the general population. Even though there is no specific evidence-base for interventions for mood and anxiety disorders in TSC, there is a strong evidence-base for treatments of these manifestations in the general population. For treatment of mild to moderate mood and anxiety disorders in individuals with TSC, non-pharmacological approaches are recommended, such as physical activity and cognitive behavioral therapy. Nonverbal therapies (psychomotor therapy, creative therapy, mindfulness) and the adjustment of contextual factors may also be part of first-line treatment. 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, such as selective serotonin reuptake inhibitors (SSRIs), or serotonin and noradrenalin reuptake inhibitors (SNRIs). Diagnosis and treatment of mood and anxiety disorders should always be done in collaboration with a qualified mental health professional

MA5. Mood and anxiety disorders should be managed using a personalized approach. The individual’s profile of needs will be influenced by many factors, including co-occurring TAND and physical health problems, age and developmental level, personal, family, and psychosocial factors. All these should be integrated to plan a personalized approach to intervention

MA6. Further research is needed to generate an evidence base for identification and treatment of mood and anxiety difficulties and disorders in TSC. In spite of high rates of mood and anxiety difficulties and disorders in TSC, the research evidence base remains very limited. For example, there are no TSC-specific data to inform targeted pharmacological or non-pharmacological interventions for mood and anxiety disorders. Further research is therefore clearly needed