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

2. 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

3. 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

4. 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

5. 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)

6. 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

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

8. 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%)

9. 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

10. 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

11. 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

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

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

14. Thank you!