Motor neuron disease: SLIDES NOT FOR REPRODUCTION OR …Motor neuron disease: Hope from despair...
Transcript of Motor neuron disease: SLIDES NOT FOR REPRODUCTION OR …Motor neuron disease: Hope from despair...
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Motor neuron disease:Hope from despair through multidisciplinary care
@NDCNOxford
Professor Martin Turner
SLIDES NOT FORREPRODUCTION OR
ONWARD CIRCULATION
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La sclérose amyotrophiqueAmyotrophic Lateral Sclerosis = MND
corticospinal (lateral) tract scarring
UMN
spasticity, hyperreflexia due to ‘lateral sclerosis’
Jean-Martin Charcot (1825-1893)
spinal cord anterior horn cell loss
LMN
muscle wasting = amyotrophy
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secretionsnutritioncommunication
disability loss of independence
cognition and behaviour
corticobulbaremotionality
respiratory insufficiency = median
survival 30 months
hypermetabolism
upper motor neurons
lower motor neurons
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The heterogeneity problem in MND
Proudfoot M et al. ALS-FTD 2016
To assess efficacy:
1. Insensitive 2. Needs 12 months
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Rate of decline individually fixed
Gowers WR. A Manual of Diseases of the Nervous System. 1886
Variable decline in revised
ALSFRS-R (48 to 0)
Rate of decline in ALSFRS-R
5 years
10 years
15 years
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‘Pure’ MND MND with dementia
MND + cognitive impairment
MND patients show changes that overlap with frontotemporal dementia
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Why family history is unreliable:
•Variable penetrance•Early death•Adoption•Non-paternity•Hidden disease
The genetics of ALS and FTD
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Time for MND specialist to make diagnosis:
Average years for patient to reach specialist:
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Patient
GP
General neurologist
Denial
Uncertainty
Diagnostic precision (not always e.g. PLS)
Symptoms
Progressionof symptoms
Clear neurologicalsigns
Further investigations/treatment trials
1-2 months
2-12 months
2-4 months
Diagnostic delay (mean 12 months)
MNDneurologist
2-6 months
Non-neurologist Unnecessary investigations/procedures
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Predictors of prognosis at presentation
• POOR:– Short referral latency– Respiratory-onset– Marked cognitive impairment– Bulbar-onset
• BETTER:– Pure LMN or UMN syndromes– Regional isolation for > 12 months– Younger age (<45)
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Oxford referral base120 new patients/annum; 250 in regular FU
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The Clinic Coordinator
• The Cornerstone• Specialist Nurse• Sign-posting• Liaison with community
MDT
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OT
• Physical aids• Mobility review• Wheelchair
provision & optimisation
• Head support
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Sialorrhoea
• Pooling of oral secretions• Major source of
morbidity• Reduced swallowing
frequency– Not over-production
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Secretions
• Thin secretions– Hyoscine patches
• skin allergy• ‘dizziness’
– Atropine eye drops 1%• may be hard to source
– Amitriptyline• sedation
– Glycopyrronium• Can be diluted and given via PEG
– Botulinum toxin• transient• Unpredicatable
– Radiotherapy– Suction device
• Thick secretions– Peri-glottic (hard to clear)– Avoid anti-cholinergics– Pineapple/papaya– Nebulised saline
• with suction device– Carbocisteine (Mucodyne)
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Emotionality
• ‘Pseudobulbar affect’– See in Alzheimer’s and PSP
• Corticobulbar pathway involvement• Explosive, incongruous, short-lived burst of emotion• Crying>>>laughing• Dextromethorphan+quinidine (Neudexta)• SSRI
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• Premorbid lower BMI• Hypermetabolic state in disease
• Weight loss linked to survival
• Higher cholesterol linked to slower progression
• HighCALS trial starting 2020
Koerner et al. BMC Neurology 2013
Nutritional support in MND
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Dedicated MND Nutrition Clinic
• Recognition that gastrostomy decision is major issue for many• Chance to discuss and allows ‘cool off ’ period– May not use immediately or solely
• Specialist nurse, dietitian, enteral feeding nurses• Spouse involvement encouraged– Reassure about physical management
• Explain what will happen in hospital• (Reflect on whether PEG appropriate)
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Traffic light system
Respiratory assessment
Data as yes/no responses
Traffic light category + actions
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Procedural adaptations• Experienced operator• Minimal sedation• Head up tilt 30o
• Paediatric mouthguard• NIV available for those stratified red
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Communication• Exceptional to lose all communication:
– Lightwriter (iPad)– Point It!– Eye-tracking
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Respiratory care
• FVC– Sniff for those with bulbar
symptoms• Respiratory symptom questionnaire• Overnight oximetry• Respiratory physio• Use of NIV
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Cough Assist• Clears secretions by gradually
applying a positive pressure to the airway, then rapidly shifting to negative pressure
• Indication still uncertain– Trial planned
• Recurrent admissions for chest infection
• LMN-predominant, slowly-progressive
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NIV effect on survival
Bourke et al., Lancet Neurology 2006
Improves QoL
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Tracheostomy
• 10% in recent Italian series (Chio et al. JNNP 2009):– Mean survival afterwards only 1 year
• 30% in Japan:– Frequently ‘locked in’
• More open discussion:– What are patient’s motives?– Avoiding sense of confrontation– Desire often dissipates
• For those that do:– Major resource challenge
Turner MR et al. Tracheostomy in MND. Practical Neurology 2019
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Pain
• Multi-factorial, neglected area:– NSAIDs versus neuropathic pain agents
• Immobility:– Prolonged sitting (NB pressure sores RARE)
• Posture and wheelchair management– Unable to turn in bed
• Muscle atrophy:– Altered joint dynamics
• Severe spasticity:– Uncommon, mainly PLS patients– Baclofen, Gabapentin
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Frontotemporal involvement
• Frank dementia rare (10%)– Precedes the onset of motor problems– Faster progression of motor disease
• Clinical features:– Apathy or disinhibition (personal neglect)– Poor insight– Altered food preference, narrowed and favouring
sweet foods– Food cramming (can precipitate choking)
• Involve extended family– Minimize risk-taking behaviour
• Ask about subtle behavioural change– Source of carer morbidity
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Carers
• Very high morbidity• Depression rates high– cf MND patient low
• Benefit hugely from periods of Hospice-based respite
• Community palliative care involvement strongly linked to later perception of ‘good death’
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From Brain’s Diseases of the Nervous System, Ed. Walton 1977
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Compassionate honesty
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Do something rather than nothing?
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I want to try drug X
• Examples (not complete):
• Edaravone – Mitsubishi Tanabe Pharma • TW001 (Oral Edaravone) – Treeway • NurOwn - Brainstorm • Masitinib – AB Science • Ibudilast – MidicNova • GM604 - Genervon • Cu-ATSM…
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Andrea Malaspina
Ching-Hua Lu Liz Gray
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Levels reflect rate of progression and the individual stability over
time is ideal for assessing therapy
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Compare where MS is
Hauser S et al.
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AMBRoSIAA Multicentre Biomarker Resource Strategy In ALS
OXFORD SHEFFIELD LONDON
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An opportunity for every patient:Integrating research with care
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A genetic therapy revolution has arrived
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10% of all MND is now potentially treatableOligonucleotides:
1. SOD1 in trial2. C9orf72 imminent…
Jiang & Cleveland Neuron 2016
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Families for the Treatment of Hereditary MND
FaTHoM
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Take home points• Multi-disciplinary care anticipates problems, reduces hospital admissions, maximises
quality of life and improves survival
• Early Community Palliative Care referral is extremely valuable
• MND & FTD overlap, with a common molecular background
• Behavioural change in MND has been underestimated and is a major burden for carers
• Genetic screening is becoming more routine and requires wider MDT training
• A therapeutic era for MND is imminent but may increase community support needs
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BioMOx
Kevin TalbotNeurologist
Rachael MarsdenNurse ConsultantClinic Coordinator
Jenny RolfeOccupational
Therapist
Success in research through excellence in care
Liz GrayPost-doctoral
scientist
Lynn OssherResearch
Coordinator
Emily Feneberg
Neurologist
Evan EdmondNeurology
trainee
Thanuja DharmadasaNeurology
post-doctoral trainee
(Sydney)
Lucy FarrimondNeurology
trainee