OPTCARE Neuro - Palliative care in patients with Multiple Sclerosis (MS)

WHO Collaborating Centre
for Palliative Care, Policy and
Rehabilitation
OPTCARE NEURO -
Palliative care in patients
with Multiple Sclerosis (MS)
Dr Wei Gao
Senior Lecturer
Cicely Saunders Institute
Email: wei.gao@kcl.ac.uk
6th November 2016, MS Trust Annual Conference
@Beaumont House, Windsor
www.csi.kcl.ac.uk

Follow us on twitter @csi_kcl OPTCARE Neuro www.csi.kcl.ac.uk
Background
• MS – the most common non-traumatic
disability condition
• People severely affected by MS have
unmet needs – symptoms, disability,
effect on family
• Palliative care offered mainly to people
with cancer (95% hospices/ community
teams, 90% hospital teams)
• Recommendations to extend palliative
care to non-cancer conditions but little
evaluation

• Palliative care is the active holistic care of patients with
advanced progressive illness
• Management of pain and other symptoms and
provision of psychological, social and spiritual support is
paramount. The goal of palliative care is achievement of
the best quality of life for patients and their families
• Many aspects of palliative care are also applicable
earlier in the course of the illness in conjunction with
other treatments
Palliative Care WHO 2003

A Phase II trial of short-term integrated
palliative care (SIPC) in MS
Higginson IJ et al. Postgrad Med J 2011;87:769-775
Copyright © The Fellowship of Postgraduate Medicine. All rights reserved.
N=26
N=26

• Improved
symptom
control
• Reduced
caregiver
burden
• Saved costs
to the NHS
J Pain Symptom Manage. 2009; 38(6): 816-26.

• BUT no evidence on the best ways to deliver palliative
care
• Should it be ‘end of life’ (if so when?) or earlier?
• Integration with neurology and rehabilitation needed
• The SIPC service works in a single centre and in a single
condition:
 Will it work in a wider setting?
 Will it work in broader conditions?
Gaps in knowledge

• Aim: to evaluate the clinical- and cost-effectiveness of
Short-term Integrated Palliative Care Services (SIPC) to
OPTimise CARE for people with advanced long-term
Neurological conditions
• Funder: NIHR £1,348,309.60
• Trial period: 1st April 14 to 30th March 18
OPTCARE Neuro – Phase III trial

OPTCARE Neuro - Design
Quantitative
Mapping Survey 1 Qualitative Survey 2
OPTCARE Neuro Trial
randomized, double-blind, multi-centre

OPTCARE Neuro – inclusion criteria (MS)
• Adults (≥18 yrs) with either aggressive relapsing disease with rapid
development of fixed disability OR those with advanced primary or secondary
progressive disease, with limitation in a number of areas including gait and upper
limb function. No defined referral criteria for disability but would expect most
patients EDSS ≥7.5
AND
• Who have one unresolved symptoms which has not responded to usual care
AND at least one of: unresolved other symptom; cognitive problems; complex
psychological (depression, anxiety, loss, family concerns),
communication/information problems and/or complex social needs
AND
• Who are able/their capacity can be enhanced to give consent OR a personal
consultee can be approached to give opinion on whether or not the patient would
have wished to participate in the study
AND
• Who are living in the catchment area of the palliative care service

• Short-term integrated palliative care (SIPC) should be offered
when patients are severely affected by their illness, are highly
complex & at high risk of hospital admissions requiring a high
need of care
• Patients do not have to be actively dying. Our aim is to reach
patients before this stage, in the view that earlier personalisation
of care will improve outcomes
• SIPC is delivered by multi-professional palliative care teams and
consists of approx. 3 visits over 6-8 weeks
• Intervention group receive SIPC immediately after
randomisation, patients in the standard group wait for 12 weeks
to receive SIPC
OPTCARE Neuro - Intervention

Progress so far…..
Quantitative
April 2015:
Trial opened
in London,
Nottingham
and Liverpool
July 2015:
Trial opened
in Cardiff
November
2015:
Trial opened
in Brighton
February
2016:
Additional site
opened in
Chertsey
September
2016:
Additional
site opened in
Sheffield
Target = 356 (60-70% carers)
Recruited: patients = 200 (carers = 141)
(MS = 76; IPD = 82; PSP = 19; MSA = 8; MND = 15)

Mapping - aims
• Current service provisions of neurology and
specialist palliative care
• Current service integration between
neurology and specialist palliative care
services

Mapping – methods
Settings
• Eight sites in England &
Wales
Data collection
• Catchment and population
served
• Service provision and staffing
• Integration and relationships
• Separate data collection
forms for neurology and
palliative care teams

• Centres varied in size of catchment areas (39-5,840
square miles) and population served (142k-3500k)
• Neurology services varied in the number and type of
provided clinics, and palliative care services in the
settings they work in
• Integration was most developed in MND, followed by
Parkinsonism (IPD, MSA & PSP) and least in MS
• The number of neurology patients per annum
receiving specialist palliative care reflected these
differences in integration (range: 9-88 MND, 3-23
Parkinsonism, and 0-5 MS)
Mapping – results

Mapping – output

• Online survey consisting of 13 (for neurology) or 10
(for palliative care), multiple choice or open comment
questions to:
- understand the current levels of
collaboration between the two specialties
- explore the expectations and views
towards SIPC
Survey professionals - Aims

• 58% palliative care and 36%
neurology “Good/Excellent”
• Nearly half (45%) neurology
“Poor/None” v.s only 12%
palliative care
• Both groups reported
stronger links for MND
• Both felt the SIPC service
would influence
collaborations for the better
(65-70% in both groups)
Survey professional - Current collaboration
0
10
20
30
40
50
60
Excellent Good Neutral Poor None
Percentageofresponses%
Neurology
Palliative

Survey professionals - Expectations for SIPC
“building relationships &
dispelling myths of palliative
care for end of life only”
“Better symptom assessment and
support & an opportunity to meet
patients at an earlier stage”
“help patients/carers
think about their future
wishes & improve their
understanding of their
disease”
“Improved collaborative
working & earlier
involvement of palliative
care services where
appropriate”
“Better support in the
community for
patients and families”
“Increase advice for carer/patient
with emotional support/advice &
possible advance care planning”

Survey professionals - Barriers for SIPC
Palliative care
- time pressures and
resources
- clinician awareness of
services offered / appropriate
referrals
- need for longer-term care
once patients are seen
- patient perceptions of
palliative care
Neurology
- resources
- clinician awareness of
services offered
- continuing collaborations
& communication beyond
the trial
- geographical limitations

• Collaborations can be improved and both specialties are
positive about the impact new SIPC service will make
• The barriers identified highlight areas for consideration
in order to shape future service delivery
• Survey will be repeated at the end of the trial to:
- understand how collaborations & views have
changed
- how the SIPC has or has not affected the process of
care
- identify areas for improving service
Survey Professionals - Conclusions

The team
Core team members
• Co-CIs: Prof. Irene Higginson & Dr Wei Gao
• Trial Manager/Research Associate: Dr Nilay Hepgul
• Trial Administrator: Zaynah Sheikh
Team members
Prof Ammar Al-Chalabi, Dr Sarah Awan, Dr Sabrina Bajwah, Dr Cynthia Benz, Dr Rachel
Burman, Dr Anthony Byrne, Prof K Ray Chaudhuri, Dr Vincent Crosby, Ms Joanna
Davies, Ms Marsha Dawkins, Dr Catherine Evans, Ms Mim Evans, Ms Sarah Farnan, Dr
Karen Groves, Prof Matthew Hotopf, Dr Diana Jackson, Mrs Paramjote Kaler, Prof Nigel
Leigh, Dr Fiona Lindsay, Ms Cathann Manderson, Prof Paul McCrone, Ms Caroline
Murphy, Dr Fliss EM Murtagh, Mrs Jenifer Newton, Ms Caty Pannell, Ms Louise Pate,
Prof Andrew Pickles, Dr Eli Silber, Miss Debbie Tonkin, Prof Lynne Turner-Stokes, Dr
Liesbeth van Vliet, Dr Andrew Wilcock, Dr Deokhee Yi, Prof Carolyn Young
Centres
King’s College Hospital, London (PI Dr Rachel Burman); The Walton Centre, Liverpool (PI
Prof. Carolyn Young); Cardiff & Vale University Health Board (PI Dr Anthony Byrne);
Nottingham University Hospital (PI Dr Vincent Crosby); Sussex Community NHS Trust (PI
Dr Fiona Lindsay); Ashford & St. Peter’s Hospitals NHS Trust (PI Dr Clare Smith);
Sheffield Teaching Hospitals NHS Trust (PI Dr Ellie Smith)

Funding Acknowledgement:
• This project is funded by the National
Institute for Health Research HS&DR,
project number 12/130/47
• CLAHRC South London
• Clinicians and staff who helped to provide
information; Clare Pearson for the GIS map
Department of Health Disclaimer:
• The views and opinions expressed therein
are those of the authors and do not
necessarily reflect those of the HS&DR,
NIHR, NHS or the Department of Health
Acknowledgements and Disclaimer:
Follow the progress
of OPTCARE Neuro
via twitter
@OPTCARENeuro

OPTCARE Neuro - Palliative care in patients with Multiple Sclerosis (MS)

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