Psychological Support for Kleine-Levin Syndrome Dr Laura Madeley Guy’s & St. Thomas’ NHS Foundation Trust

Psychological Difficulties: Diagnosis Diagnosis - alongside hypersomnia KLS includes: Cognitive impairment (apathy, confusion, slowness, amnesia) Specific feelings of derealisation (dreamy state, altered perception) Hyperphagia, hyper sexuality Irritability, anxiety, fear of being alone Behaviour changes Depressed mood Risk

Psychological difficulties between episodes? Restoration of normal function between episodes Patients with KLS slightly more anxious than controls (Arnulf 2008) No differences in depression (Arnulf 2008) No evidence of increased psychiatric difficulties in family or affected participants (Arnulf 2008) Groos (2018) 21% develop psychiatric disorder secondary to KLS Mood disorder (n=14), anxiety disorder (n=7), eating disorder (n=2), psychotic disorders (n=2), schizoaffective disorder (n=1), cannabis dependence (n=1) Groos (2018) Psychiatric co-morbidity (n=10) included social anxiety, phobia generalised anxiety disorder (GAD), anxiety disorder NOS, ADHD, Bipolar disorder Managing risk, identifying signs of emerging psychological / psychiatric difficulties

Challenges: Diagnosis Accurate diagnosis can take a long time - creates uncertainty Differential diagnosis: Bipolar Disorder, Psychosis, Depression, Eating disorder, Metabolic disorders, Neurological disorders, Epilepsy, Kluver-Bucy Syndrome, Multiple Sclerosis Setting of treatment may vary Multiple tests and treatments

Challenges: Treatment during bouts Stimulants effective for sleepiness, but not on cognitive or behavioural changes Mood stablisers, anti-psychotics, antidepressants used with some effect Lithium and valproate effective in preventing further episodes in 24% of cases (Arnulf et al 2008) Watchful non-interventional attitude during episodes (Arnulf 2008)

Published Studies Arnulf et. al. (2008) case series of 108 patients Lavault et. al (2015) case series of 120 episodes, addresses diagnostic issues and pattern of episodes Groos et al (2018) case series 115 patients “emerging psychiatric disorders in Kleine-Levin Syndrome” Individual studies / Case Reports Context, timecourse and symptoms vary Impact of disorder varies for different individuals

Psychological approaches “3-P Model” Predisposing factors Precipitating factors Perpetuating factors

Precipitating Factors? Time of year - autumn / winter Events around onset reported in 89% (Arnulf 2008) Illness / infection (72%) Alcohol use (23%) Sleep deprivation (22%) Unusual stress (20%) Physical exertion (19%) Travelling (10%) Head trauma (9%) Marijuana use (6%)

Perpetuating factors? Anxiety? Lavault et al (2015) identified increased anxiety in individuals with longer bouts Hypervigilence Low Mood Difficulty in controlling lifestyle factors associated with episodes eg sleep deprivation, stress, possibility of infection Alcohol and substance use

What are the challenges? Rarity of disorder Intermittent nature of the disorder Range and efficacy of treatments Managing episodes and the impact of these Managing the time between episodes Age of onset Impact on life How to discuss the diagnosis with others

Psychological interventions Create ‘formulation’ using 3P model - understand risk factors where possible Develop Management plan for episodes Coping after episodes difficulty making sense of behaviour, identifying / challenging thoughts regarding the past / future Adjustment to diagnosis how to live as full a life as possible Creating ‘safe uncertainty’ in remitting-relapsing conditions Management of other co-morbid difficulties (if present) eg anxiety, mood disorder etc

Psychological Approaches Cognitive Behavioural Therapy Acceptance and Commitment Therapy Mindfulness Based Stress Reduction Compassion Focused Therapy

Where to access support Sleep disorders services Improving access to Psychological Therapies Services (IAPT) - GP or self referral CBT / Mindfulness based approaches Universities / Colleges

Thank you!