What are the implications of Tuberous Sclerosis Complex on mental health, and how should I address these in primary care?

While Tuberous Sclerosis Complex (TSC) is not explicitly detailed in the provided guidelines, its common associated conditions, such as epilepsy, developmental difficulties, and learning disabilities, have significant implications for mental health and require specific management in primary care ¹.

Implications of Associated Conditions on Mental Health:

• Epilepsy: A diagnosis of epilepsy can profoundly affect a person's mental health, potentially leading to feelings of social exclusion and stigma ¹. Individuals with epilepsy are at risk of depression, anxiety, other mental health difficulties, and an increased risk of suicide ¹. Children and young people with complex childhood epilepsy syndromes may also experience developmental difficulties and cognitive impairment ¹.
• Learning Disabilities and Developmental Difficulties: These conditions are frequently associated with mental health problems and challenging behaviour ¹,²,³. The guidelines recommend following specific NICE guidance for mental health problems in people with learning disabilities and challenging behaviour ¹,²,³.
• Neurodevelopmental Disorders: Conditions such as Attention Deficit Hyperactivity Disorder (ADHD) and Autism Spectrum Disorder (ASD) are relevant considerations, and specific NICE guidelines should be followed for their recognition, referral, and management ¹,²,³.
• Sleep Disturbances: Common in conditions like cerebral palsy (which shares comorbidities with TSC, such as seizures), sleep disturbances can be caused by seizures, pain, discomfort, and poor sleep hygiene, all of which can impact overall mental wellbeing ³.

Management in Primary Care:

• Coordinated and Multidisciplinary Care: For individuals with epilepsy who also have a mental health condition or learning disability, provide coordinated care through a multidisciplinary team approach ¹. Ensure effective communication and liaison between healthcare professionals across all relevant services to plan and agree on care ¹.
• Routine Review: As part of routine management, regularly review neurodevelopment, cognitive function, mental health, social and emotional wellbeing, and learning disabilities ¹.
• Assessment and Support for Mental Health:
  • Depression: Offer assessment and provide mental health support and treatment in line with NICE guidelines for depression in adults with a chronic physical health problem and depression in children and young people ¹.
  • Suspected Mental Health Difficulties: Be alert to anxiety, other mental health difficulties, and the risk of suicide ¹. If mental health difficulties are suspected, consider referral and follow relevant NICE guidelines for conditions such as ADHD, ASD, mental health problems in people with learning disabilities, generalised anxiety disorder, panic disorder, psychosis, and schizophrenia ¹.
  • Psychosis: Urgently refer all children and young people with a first presentation of sustained psychotic symptoms (lasting 4 weeks or more) to a specialist mental health service (CAMHS or an early intervention in psychosis service) ⁴. Antipsychotic medication should not be initiated in primary care for these symptoms without consultation with a consultant psychiatrist ⁴.
• Tailored Approach: When identifying and assessing mental health problems, tailor the approach to the individual's needs and abilities, especially considering communication difficulties or learning disabilities ². Involve families and carers in this process when agreed ²,³.
• Consider Contributing Factors: Take into account specific factors that might affect identification, assessment, and management, including adverse effects of medicines, communication difficulties, learning disabilities, impaired neuropsychological functions, and other comorbidities like epilepsy and pain ². Discuss whether physical problems or frustration contribute to emotional distress or challenging behaviour ².
• Managing Sleep Disturbances: Optimise sleep hygiene and manage any treatable causes of sleep disturbances ³. For problems with falling asleep, a trial of melatonin may be considered, but regular sedative medication for primary sleep disorders should not be offered without specialist advice ³. Refer to specialist sleep services for ongoing disturbances ³.