optcare neuro - palliative care in patients with multiple sclerosis (ms)

WHO Collaborating Centrefor Palliative Care, Policy and

Rehabilitation

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

Dr Wei GaoSenior LecturerCicely Saunders InstituteEmail: [email protected]

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;87:769-775Copyright © 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 CardiffNovember

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)


OPTCARE Neuro - Design

Quantitative

Mapping Survey 1 Qualitative Survey 2

OPTCARE Neuro Trial randomized, double-blind, multi-centre


Mapping - aims• Current service provisions of neurology and

specialist palliative care

• Current service integration between neurology and specialist palliative care services


Mapping – methodsSettings • 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

Excellent Good Neutral Poor None0

10

20

30

40

50

60

NeurologyPalliative

Perc

enta

ge o

f res

pons

es %


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 teamCore team members• Co-CIs: Prof. Irene Higginson & Dr Wei Gao• Trial Manager/Research Associate: Dr Nilay Hepgul• Trial Administrator: Zaynah Sheikh

Team membersProf 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

CentresKing’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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