Mental health problems in people with MS: What can we do? Eli Silber Consultant Neurologist Kings College hospital

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1 Mental health problems in people with MS: What can we do? Eli Silber Consultant Neurologist Kings College hospital

2 The emotional consequences of MS MS Population General Population Depression (Lifetime Prevalence) Depression (Annual Prevalence) 40-50% 10-20% 20% 3-10% Suicide Anxiety (Lifetime prevalence) times higher 6.4% suicide attempts % 21% GAD 18.6% 5.1% Panic Disorder 10% 3.8% OCD 8.6% 0.8% 0.1% 1% suicide attempts Patten (2003); Siegart & Abernathy (2005); Sadovnick et

3 What is depression? (DSM and ICD Criteria) Cognitive changes Depressed mood (sad & empty, appears tearful)- unresponsive to circumstances Reduced interest/ pleasure in daily activities Reduced self esteem and self confidence Feeling worthless / guilt Bleak view of the future Ideas (plans) of self harm / death Physical changes Increased/ decreased sleep Motor agitation / retardation Fatigue / loss of energy Reduced activity Reduced concentration / attention / indecisive Altered appetite (and weight)

4 Anxiety Exaggerated response to perceived danger Associated with depression- part of spectrum Generalised v.s. specific 35% of MS patients, associated with depression, alcohol, self harm, social stress

5 What causes depression in MS? Reactive Effects on: self esteem, family, relationship, work Practical concerns: Financial, housing Pain Biological Both are brain diseases! Related to: Disability & duration Cognitive dysfunction Frontal & temporal lesions

6 Alcohol and other drugs Abuse was thought to be uncommon? Poor tolerance,? Less access BUT 1/6 drink excessively Linked to suicidal ideation, anxiety, family mental health problems Cannabis use Recreational v.s medicinal Many try for medicinal purposes- few use

7 Cannabis use amongst people with MS in South East 254/337 questionnaires returned 109 (43%) had ever used cannabis 59 (23%) started use after diagnosis (90% for MS symptoms) 30% reported use to attempt to relieve symptoms 46 (18%) used in last month, 12% to relieve MS symptoms Most common symptoms pain and spasticity Most 1-5 doses/ week, 5> 20

8 Risks for use (regression analysis) Married/ cohabiting Smokers Disability (Lower limb) Symptoms pain, spasticity, bladder, sleep Patterns of use

9 Management of depression Address precipitating problems (Social) Medication Psychological One of the problems in MS that is most amenable to interventions!

10 Cognitive behavioural therapy Problems arise from Cognitive distortions, learned negative beliefs and thought processes Goals: Identify and alter self destructive thoughts, therapist is an active guide Concentrates on coping strategies and problem solving Fixed duration, broadly useful, active client

11 What works in MS? Few studies of CBT in MS Few drug trials in MS, desipramine, sertraline 63 with MS and major depression randomised (Mohr 2001) CBT= Sertraline > supportive group therapy

12 The Stepped Care Model - Depression Step 5: Inpatient care, crisis team Step 4: CMHT Step 3: Primary Care Step 2: Primary care Risk to life, severe self neglect TR, Recurrent, Atypical, Psychotic, Risk Moderate/Severe Anxiety/Depression Mild Depression/Anxiety Medication, combined treatment, ECT Meds, Complex Interventions Meds, Social Support, Brief Psychological Intervention Watchful waiting; CCBT; self help, Brief intervention Step 1: GP/PN/MSCNS Recognition DH (2007) Assessment

13 Cortical vs. subcortical dementia Cortical Loss of specific Functions Cortical lesions Subcortical Slowing, apathy, depression Difficulty accessing functions- cues helpful Variable correlation with physical disability

14 How much of a problem? Over half of people with MS will have some dysfunction on detailed testing Approximately 10% will have severe problems May occur early in the disease Often not related to physical disability

15 The impacts are felt strongly Younger Working and families The double blow of physical and cognitive dysfunction Community resources for people with cognitive problems are directed towards elderly

16 What can we do? 1. Identify the problem 2. Treat MS factors that impact 1. Medical problems: Nutrition, infections 2. Medication / drugs and alcohol 3. Fatigue 4. Depression 3. Can we delay cognitive decline? 4. Management Early and late The role of medication

17 Delaying cognitive loss: Does reducing inflammation help? People with relapsing remitting MS on DMTs have less loss of brain volume In SP MS, people treated with interferon had less deterioration on PASAT testing

18 How much of a problem is fatigue in MS? Silent symptom thus under recognised Most commonly reported symptom in most series Prevalence of up to 80% 2/3 rate fatigue as amongst the three worst symptoms

19 What is fatigue? Subjective lack of physical or mental energy perceived by individual or carer to interfere with usual or desired activities. Limits functional activities or QOL Acute < 6 weeks; chronic > 6 weeks. 50% of the time

20 MS Related fatigue Fatigue may be common and normal however in MS Worse in heat Interferes with and may prevent sustained physical function Emerges easily Interferes with role/ responsibilities

21 Causes of MS fatigue IMMUNE CNS Dysfunction Autonomic dysfunction Endocrine dysfunction Not related to physical disability!

22 Causes of MS Fatigue: Sleep 7 Fatigue (FSS Score) Number of days of middle insomnia

23 Number of Times Reasons for Insomnia Cited (Percentage*) Initial n=236 Middle n=295 Terminal n=146 Total n=677 Pain/Discomfort 53 (22.5%) 64 (21.7%) 22 (15.1%) 139 (20.5%) Spasms/Tightnes s 34 (14.4%) 35 (11.9%) 13 (8.9%) 82 (12.1%) To pass urine 34 (14.4%) 214 (72.5%) 59 (40.4%) 307 (45.3%) Anxiety 65 (27.5%) 29 (9.8%) 17 (11.6%) 111 (16.4%) Low mood 46 (19.5%) 10 (3.4%) 10 (6.8%) 66 (9.7%) External factors 43 (18.2%) 47 (15.9%) 53 (36.3%) 143 (21.1%)

24 Management of MS related fatigue Address aggravating factors Medication (Pain- AEDs, opiates ; Spasticity; Anticholinergics Alcohol Depression Lifestyle changes Exercise Medication

25 Exercise Good for Weight, osteoporosis, mood, physical conditioning Trials 4 Weeks exercise as part of rehabilitation stayreduced FSS (moderate) and improvement in SF- 36 Rehab v.s. wait list over 1 year improved Principles Take it slow, Expert supervision, Safety first Avoid heat - swimming Strength and cardiovascular

26 Energy conservation Balance activity and rest Plan ahead, set goals and priorities Listen to your body forgive yourself Pace yourself- Spread tasks over the day and week Look at storage and work areas Use lazy options for cooking/ cleaning/ shopping

27 Medication for fatigue: Amantadine Blocks dopamine uptake, stimulates postsynaptic receptors Usual dose: 100mg am, 100mg noon Trials 63% v.s 22% reported any improvement in 4 point scale Canadian trial 115 patients- improved fatigue only at week 1, improvement in effect of fatigue on activities Amantadine v.s. Pemoline v.s. placebo. Improvement in MS FS but not FSS, 79% v.s. 52% felt better

28 Medication for fatigue:modafinil Wake promoting agent- hypothalamus Well tolerated, nervous, dizzy, insomnia Trials: 72 patients 200mg/day after 2 weeks improvement in mean FSS, MFIS, VAS and ESS. 69% experienced improvement. Open label study of 50 patients Clear improvement in 87%. Mean improvement in FSS and ESS RCT 115, improvement in FSS in treated and placebo- no significant difference between these.

29 It is all very well studying mental health in MS- What can we do about it?

30 Limitations : Patient & carers Stigma I am not weak / mad I wont see a shrink! I wont take drugs Lack of knowledge what can you do? Its natural to be depressed in this situation Limited access to mental health services

31 Limitations to care: MS and mental health services Lack of training/ experience /knowledge confidence- Neurology about mental health and vice versa! Our own prejudices Difficult patients

32 Limitations to care: The system separates Hospital and primary care General medical and mental health services Medical and social services Services for patient and carers The mind body divide is still around!!

33 Do nothing! Models of care Refer to psychiatrists Get the GP to sort it out Do it ourselves Hospital psychologist Good for articulate, middle class, educated, accessible CPN

34 Community psychiatric nurse Lots of them! Practical and pragmatic training Hospital and community Medication and therapies Links with social services

35 CPN: Practicalities Three year project Funded by MS Society (and Teva) Based at Kings and the Dept of Psychiatric nursing & neuropsychiatry at the IOP.

36 Role of CPN Individual case load Educational Referral and management guidelines Audit

37 Structure of service Referral for assessment from MS professional Assessed by CPN including formal measures of mood, cognition and fatigue Discharged Treatment plan CPN case Medication CBT Liaison Referral Neuropsychometry Neuropsychiatry Review outcomes

38 Results at 1 year Characteristics of study participants (n=100) Mean Age: 42.5 (Median 42.0) 5.0 White: 66.2% Female: 69% Mean EDSS Score: Married: 31.9% Employed: 22.6% Diagnosis Depression: 84% Psychosis: 2% Anxiety: 41% Bi-polar Disorder: 4.9% Mixed affective disorder: 36% Cognitive Impairment: 42.9% Suicidal Ideation: 40.6% Conversion Disorder: 1% Dysthymia: 12.1% Frontal Lobe syndrome: 2% Suicide attempt: 1% Pseudobulbar affect: 2%

39 Management at 1 year Treatment Anti-depressant medication: 52.6% Appropriate for CBT: 35% Declined CBT: 5% Counselling: 2% CBT & Medication: 22% Cognitive Behaviour Therapy 35% were appropriate for CBT 5% declined CBT and 4% dropped out. 9 people have completed CBT

40 Progress Merc Serono had agreed to fund a further three year project We are negotiating with the local branches of the MS Society to develop a further post in SE London We are developing a research proposal with collaborators from the IOP/ Maudsley

41 The challenge is not to just understand the world but to change it