Table 8 Overactive/impulsive cluster recommendations

OI1. Overactive and impulsive behaviors are common in TSC and should be evaluated in children and adults. It is common to see overactivity, impulsivity, and restless behaviors in TSC. Even though manifestations typically have lower rates in adulthood than childhood, it may be seen across age, developmental level, sex, and genotype (TSC1 or TSC2). It is therefore important to screen for these behaviors on a regular basis and to proceed to the next steps when identified

OI2. All individuals with overactive and impulsive manifestations should be considered for a clinical diagnostic assessment for attention deficit hyperactivity disorder (ADHD). There may be many different reasons why individuals with TSC present with overactivity, restlessness, or impulsivity. These may include physical health (e.g., manifestations of physical illness or adverse effects of medications), developmental (e.g., in keeping with the developmental level of an individual), environmental (e.g., an overstimulating environment), or mental health reasons (e.g., as part of a psychiatric disorder). ADHD is the most common psychiatric disorder associated with overactive and impulsive behaviors. However, it is also important to consider other psychiatric disorders that may be associated with overactive and impulsive behaviors (e.g., anxiety disorders, autism, or impulse control disorders). To make a reliable psychiatric diagnosis requires training and expertise. Whenever possible, evaluation and diagnosis should be made by a specialist clinician trained in psychiatric disorders

OI3. ADHD in TSC should be diagnosed and treated using the evidence-based approaches and intervention guidelines in the general population. There are international guidelines for the diagnosis and treatment of ADHD in the general population that are based on good evidence and expert consensus. In the absence of a TSC-specific evidence base, these guidelines should be used, whilst maintaining a mindful approach to the physical and TAND-related complexity of TSC

OI4. When an individual with TSC has moderate-severe ADHD, treatment with methylphenidate or other stimulant medications should be considered. The core manifestations of ADHD include inattention, overactivity, and impulsivity. When these are associated with a diagnosis of moderate-severe ADHD, healthcare providers should consider the use of stimulant medications. Despite the theoretical concern of stimulant medications in relation to seizures in TSC, this is not the clinical experience of the consensus panel, and treatment with methylphenidate or other stimulant medications is therefore recommended for moderate-severe ADHD. Importantly, the medical treatment of ADHD should always be embedded into a comprehensive “bio-psycho-social” treatment plan

OI5. Even when ADHD is accompanied with epilepsy, intellectual disability, autism, or other physical or TAND manifestations, ADHD symptoms may respond appropriately to treatment. Acknowledging the high likelihood of co-occurring physical health and TAND manifestations in TSC, appropriate treatment of ADHD with evidence-based treatments as for ADHD in in the general population should be considered

OI6. Further research is required to improve the understanding of overactivity, restlessness, and impulsivity in TSC. There is a remarkable gap in the research literature concerning overactivity, restlessness, and impulsivity in TSC, in spite of the high prevalence rates of these behaviors. Further research is required to expand this knowledge base, including (but not limited to) evaluating non-pharmacological and pharmacological interventions for overactive and impulsive behaviors and ADHD in TSC