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Multidisciplinary working in PSP and CBD
Dr Boyd Ghosh
PSP study Day 2018
Consultant Neurologist
Disclosures
• Lectured for UCB and GSK on atypical Parkinsonism
• Drug trials for Biogen, Pfizer, TauRx, Novartis and Laboratoire Français de Fractionnement et de Biotechnologies
Aims
• Discuss why PSP and CBS need a different approach
• Evidence for a different approach
• Our clinic model for treating patients
Why should we treat PSP and CBS differently?
• Patients in advanced stages have symptoms similar or worse than cancer diagnoses1
• Poor quality of life for patients and carers
• Cost to the NHS
1. Higginson IJ, Gao W, Saleem TZ, Chaudhuri KR, Burman R, McCrone P, et al. Symptoms and quality of life in late stage Parkinson syndromes: a longitudinal community study of predictive factors. PLoS ONE 2012; 7: e46327.
Quality of life - patients
• Median score 100 (of 180) on PSPQOL
BAD GOODCalvert M, Pall H, Hoppitt T, Eaton B, Savill E, Sackley C. Health-related quality of life and supportive care in patients with rare long-term neurological conditions. Qual Life Res 2013; 22: 1231–1238.Harris MJ, Donnelly J, Massey L, Ghosh B. Quality of life in carers of patients with Progressive Supranuclear Palsy. Journal of Neurology Neurosurgery and Psychiatry In Press
Quality of life - carers
• 80% of patients are cared for by their spouse
• Around 70% of these look after their spouse 80-100% of time
• Worse carer burden and increased depression cf PD carers1
• Similar carer burden to AD carers1
• Median score of 55/104 on Carer QOL scale2
1. Schmotz C, Richinger C, Lorenzl S. High Burden and Depression Among Late-Stage Idiopathic Parkinson Disease and Progressive Supranuclear Palsy Caregivers. J Geriatr Psychiatry Neurol 2017; 30: 267–272.2. Harris MJ, Donnelly J, Massey L, Ghosh B. Quality of life in carers of patients with Progressive Supranuclear Palsy. Journal of Neurology Neurosurgery and Psychiatry In Press
Carers QOL worsens in line with patient
Carer QOL is correlated to Patient QOL
Carer QOL worsens as disease worsens
Harris MJ, Donnelly J, Massey L, Ghosh B. Quality of life in carers of patients with Progressive Supranuclear Palsy. Journal of Neurology Neurosurgery and Psychiatry In Press
McCrone P, Payan CAM, Knapp M, Ludolph A, Agid Y, Leigh PN, et al. The Economic Costs of Progressive Supranuclear Palsy and Multiple System Atrophy in France, Germany and the United Kingdom. PLOS ONE 2011; 6: e24369.
£9,600.00
£17,000.00
£22,672.00
£44,700.00
SCHIZOPHRENIA MULTIPLE SCLEROSIS
ALZHEIMER'S DISEASE
PROGRESSIVE SUPRANUCLEAR
PALSY
Economic cost
McCrone P, Payan CAM, Knapp M, Ludolph A, Agid Y, Leigh PN, et al. The Economic Costs of Progressive Supranuclear Palsy and Multiple System Atrophy in France, Germany and the United Kingdom. PLOS ONE 2011; 6: e24369.
£9,600.00
£17,000.00
£22,672.00
£44,700.00
SCHIZOPHRENIA MULTIPLE SCLEROSIS
ALZHEIMER'S DISEASE
PROGRESSIVE SUPRANUCLEAR
PALSY
Economic cost
Costs in England
• Total cost to NHS annually for patients with PSP is £167 million
• McCrone estimated 40% of costs were inpatient costs
• PSP annual inpatient costs:
• £66.8 million
Early Late
Progression of PSP and CBS
Mild Moderate Severe EOL
Regional atypical Parkinsonian syndrome clinic
• Serve Wiltshire, Dorset, Hampshire – population around 3 million
• 2 consultant neurologists
• 4 clinics a month
• Clinic coordinator - physiotherapist
• Multidisciplinary• Community teams have contact prior and after clinic
• PD nurses, therapists, dietician, Palliative care, patient charities sit in
• Palliative care• Local joint clinics
• Clinical trials assistant
Early Late
Diagnosis Early management
Complex management
Palliative
Progression of PSP and CBS
Mild Moderate Severe EOL
Diagnosis
• Hard to quantify benefits
• BUT…..
• Informs future planning and management
• Advance planning
Early Late
Diagnosis Early management
Complex management
Palliative
Progression of PSP and CBS
Mild Moderate Severe EOL
Clinic coordination
• In other conditions patients report most difficulty with coordination1
• In MND a clinic coordinator led to increased survival, slower functional deterioration and decreased hospital admissions2
• In long term Neurological conditions support improved QOL3
• Support also found to be protective for carer burden in PD4
1. Peters M, Fitzpatrick R, Doll H, Playford ED, Jenkinson C. Patients’ experiences of health and social care in long-term neurological conditions in England: a cross-sectional survey. J Health Serv Res Policy 2013; 18: 28–33.2. Cordesse V, Sidorok F, Schimmel P, Holstein J, Meininger V. Coordinated care affects hospitalization and prognosis in amyotrophic lateral sclerosis: a cohort study. BMC Health Serv Res 2015; 15: 134.3. Nishida T, Ando E, Sakakibara H. Social support associated with quality of life in home care patients with intractable neurological disease in Japan. Nurs Res Pract 2012; 2012: 402032.4. Greenwell K, Gray WK, van Wersch A, van Schaik P, Walker R. Predictors of the psychosocial impact of being a carer of people living with Parkinson’s disease: a systematic review. Parkinsonism Relat. Disord. 2015; 21: 1–11.
2017
2018 PSP and CBS Quality of life
• Caution re: memory and coding
Physiotherapy
• General benefit to rehabilitation
• Better mobility
• Fewer falls
• Unclear which strategy is best to use 1,2
• Splinting and physio may help to prevent contractures in CBS
• In brain injury a review suggests it helps range of motion3
1. Clerici I, Ferrazzoli D, Maestri R, Bossio F, Zivi I, Canesi M, et al. Rehabilitation in progressive supranuclear palsy: Effectiveness of two multidisciplinary treatments. PLoS ONE 2017; 12: e0170927.2. Intiso D, Bartolo M, Santamato A, Di Rienzo F. The Role of Rehabilitation in Subjects With Progressive Supranuclear Palsy: A Narrative Review. PM R 20183. Mortenson PA, Eng JJ. The use of casts in the management of joint mobility and hypertonia following brain injury in adults: a systematic review. Phys Ther 2003; 83: 648–658.
Occupational therapy
• Limited evidence
• Jain et al found a benefit in patients with multiple system atrophy
• Generally recommended
Jain S, Dawson J, Quinn NP, Playford ED. Occupational therapy in multiple system atrophy: a pilot randomized controlled trial. Mov. Disord. 2004; 19: 1360–1364.
Speech and language therapy
• Voice banking
• Communication (CBS)
• Swallow
Early Late
Diagnosis Early management
Complex management
Palliative
Progression of PSP and CBS
Mild Moderate Severe EOL
Decisions
• Power of attorney
• Gastrostomy
• Resuscitation
• Advanced care decisions
Palliative care
• Found to be beneficial in a range of conditions
• Bukki et al1 found that 68% of PSP and CBS patients stabilised or improved after admission to a hospice
• In long term neurological conditions 2 (MND, PD, MS) improved QOL, pain, bowels, sleep
• In MS fast track palliative care decreased carer burden and cost 3
1. Bükki J, Nübling G, Lorenzl S. Managing Advanced Progressive Supranuclear Palsy and Corticobasal Degeneration in a Palliative Care Unit: Admission Triggers and Outcomes. Am J Hosp Palliat Care 2016; 33: 477–482.2. Veronese S, Gallo G, Valle A, Cugno C, Chiò A, Calvo A, et al. Specialist palliative care improves the quality of life in advanced neurodegenerative disorders: NE-PAL, a pilot randomised controlled study. BMJ Support Palliat Care 2017; 7: 164–172.3. Higginson IJ, McCrone P, Hart SR, Burman R, Silber E, Edmonds PM. Is short-term palliative care cost-effective in multiple sclerosis? A randomized phase II trial. J Pain Symptom Manage 2009; 38: 816–826.
Early Late
Diagnosis
Regional clinic
Early management
Complex management
Palliative
Shared regional and local
Local joint clinics
Progression of PSP and CBS
Mild Moderate Severe EOL
Joint clinic in Salisbury
• 2 monthly clinic for MND and APS
• Virtual MDT with therapists, dietician, neurology nurse, palliative care
• Clinic seeing patients jointly
• Early introduction and strong links
Early Late
Diagnosis
Regional clinic
Early management
Complex management
Palliative
Shared regional and local
Local joint clinics
Progression of PSP and CBS
Mild Moderate Severe EOL
Research
Research
PROSPECT-M-UK
• Study of PSP/CBD/MSA/Atypical Parkinsonism and controls
• Longitudinal biomarker study
• 7 UK centres
• London, Oxford, Cambridge, Newcastle, Manchester,
Cardiff, Brighton
• Cross-sectional study
• 22 study centres
• UK wide – remote access
Study coordinator: Dr John Woodside
Acknowledgements
• Luke Massey
• Jade Donnelly
• Sophie Varkonyi
• Annie Griffiths
• Harriet Bush
• Palliative care
• PD nurses
• Therapists
• Wessex Neurological Centre
• PSP Association
• MSA Trust
