Care for Late Stage Parkinsonism

Lead Research Organisation: University College London
Department Name: Institute of Neurology

Abstract

The aim of this project is to evaluate the needs and provision of care for patients in the late stages of Parkinsonism and their carers in several European countries, to compare the effectiveness of different health and social care systems, and to lay the foundation for improved outcomes in this population. We will undertake an in-depth assessment of patients and their care arrangements in a population recruited through networks in six European countries. The systems and procedures that are used in the provision of care will be reviewed through a systematic literature review, interviews and assessments of patients, carers and health care providers, and through a trial comparing assessment by a specialist with management suggestions, guidance and access to telephone advice to that of usual care.
Through interviews, questionnaire assessment and review of current health-care and social care arrangement, we will assess the needs, provision of care and use of health-care resources, and their impact on patient and carer outcomes in different countries. National and regional databases will also be interrogated to identify current practice and use of health-care resources and drug usage. A systematic literature review of the evidence for effective management strategies, analysis of the study data, and evaluation of change in outcomes following specialist review will provide the basis for recommendations in the management of late stage Parkinsonism. We will also evaluate potentially useful outcome measures for use in this patient group.
In addition to charting the needs and current care provision for late stage Parkinsonism in different European countries, its cost and effectiveness, and an analysis of health-care and social care predictors of improved outcome, the project will produce a platform for the assessment of patients with late stage Parkinsonism, their current treatment and care provision, as well as guidelines on the management of this late disease phase.

Planned Impact

The information on current strategies and pathways for care provision and on interventions that are associated with better outcome in this study, both from the intervention part and the cross-sectional and longitudinal analyses, will provide important information to researchers planning studies on improved care provision. The results will also form the basis for an application for a full RCT of successful interventions of this group. As added value, there will be increased knowledge of different approaches to healthcare in different systems and of difficulties encountered by health and social care providers across European countries, which will supply social and economic studies in different health care systems.
The results may also provide a model for the research on better management of other chronic neurological disorders and age-related disorders in various health-care systems.

Publications

10 25 50
 
Description We have gained significant insight into the patient experience of receiving a diagnosis of Parkinson's disease, the subjective experience of which has implications from the early to the late stages of the disease. We have provided an in-depth account of patient experiences at the late stage of the disease in the UK through qualitative interviews and quantitative assessments. A part of these findings has been communicated internationally at the European Parliament in Brussels. The results of the current grant has been feeding significantly into the content of the new grant on palliative intervention in this stage of the disease, where we have presented the CLaSP findings at the Investigator meeting to inform the content of the intervention and the conduct of the trial. The study results are being analysed and we are in the process of reporting.
Exploitation Route Once published these findings will provide important information for better communication of a diagnosis of PD and for improving care for patients at the late stage of PD taking into account their priorities, experiences and unmet needs
Sectors Healthcare

 
Description As part of a collaboration linked to this award, a survey has been completed in more than 1,700 patients with Parkinson's disease and carers in 11 European countries. The first results of this survey have been accepted as a paper in Journal of Neurology. I have also spoken in the European Parliament on the impact of Parkinson's disease and service provision for patients with Parkinson's disease based on the results of this survey, and participated in public information events on this topic. During the latest reporting period an abstract has been presented at the Movement Disorders Conference in Berlin and I have been a lead for the Parkinson's Disease UK Executive Network in London.
Sector Healthcare
Impact Types Societal,Policy & public services

 
Description Communication skills for doctors when delivering a Parkinson's diagnosis
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
Impact The European Parkinson's Disease Association (EPDA) and Parkinson's UK have produced a film highlighting the importance of good communication when doctors give their patients a Parkinson's diagnosis; with Prof Anette Schrag chairing the patient group discussing the personal impact of diagnosis delivery.
URL https://www.youtube.com/watch?v=9DBA5D5Mx74
 
Description (PD_Pal) - Palliative care in Parkinson's disease
Amount € 3,995,437 (EUR)
Funding ID 825785 
Organisation European Commission 
Sector Public
Country European Union (EU)
Start 01/2019 
End 06/2022
 
Description NIHR Programme grant
Amount £220,900,400 (GBP)
Funding ID RP-PG-1016-20001 
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start 09/2018 
End 08/2023
 
Description Collaboration with the European Parkinson's Disease Association (EPDA) on their project "My Patient Journey" 
Organisation European Parkinson's Disease Association (EPDA)
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution The aims of the EPDA project "My Patient Journey" overlap with those of our project, but utilise different methodology and aim at a slightly different target group (all patients with Parkinson's disease, primarily those in earlier disease stages). In order to maximise the information gained from both studies and to complement the research from both projects, AS have been acting as the scientific advisor to the EPDA project and facilitate information exchange. I have advised on the methodology and content of a European-wide survey in people with PD, carers and health care professionals, and presented the results to members of the European Parliament in Brussels.
Collaborator Contribution The "My PD Journey" project is initiated by the the EPDA, in collaboration with the Movement Disorders Society European Section, and funding has been provided by the EPDA and Abbvie Pharmaceuticals. Details of EPDA publication currently in press: Title: Patient experiences of receiving a diagnosis of Parkinson's disease Authors: Schrag A, Modi S, Hotham S, Merritt R, Khan K, Graham L. A on behalf of the European Parkinson's Disease Association, Journal of Neurology
Impact Engagement with multiple stakeholders, in particular through the EPDA, including national policy makers in several European countries, national Patient Associations, members of the European Parliament and the International Movement Disorders Society.
Start Year 2014
 
Description Confidence College: Parkinson's disease 
Organisation NHS England
Country United Kingdom 
Sector Public 
PI Contribution Key contributor to the research and development of Confidence College, and provider of specialist neurological information for a tool that enables those with PD to make an informed, personalised and achievable plans, for use in their daily lives.
Collaborator Contribution As described in Confidence College website: Confidence College was created through a collaboration between NHS England and Shift.ms. Specialist neurological input was provided by NHS England London Neuroscience clinical network. Shift.ms service design team have used their experience in digital and innovation design to create an accessible web experience for those living with neurological conditions. Confidence College aims to provide media that will empower both people living with a neurological condition and primary care services equally. The tools have been developed to increase knowledge, break down barriers and allow stakeholders to plan together for better care and quality of life for people with a neurological condition. By preparing Clinicians and people living with a neurological condition to have better conversations, Confidence College can support integrated care implementation wherever it is happening. The project was developed with the help of many contributors and participation from Clinical experts, GP's and patients. Content has been developed through co-design sessions with patients and research interviews with clinicians.
Impact None to report as yet.
Start Year 2017
 
Description Confidence College: Parkinson's disease 
Organisation Shift MS
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Key contributor to the research and development of Confidence College, and provider of specialist neurological information for a tool that enables those with PD to make an informed, personalised and achievable plans, for use in their daily lives.
Collaborator Contribution As described in Confidence College website: Confidence College was created through a collaboration between NHS England and Shift.ms. Specialist neurological input was provided by NHS England London Neuroscience clinical network. Shift.ms service design team have used their experience in digital and innovation design to create an accessible web experience for those living with neurological conditions. Confidence College aims to provide media that will empower both people living with a neurological condition and primary care services equally. The tools have been developed to increase knowledge, break down barriers and allow stakeholders to plan together for better care and quality of life for people with a neurological condition. By preparing Clinicians and people living with a neurological condition to have better conversations, Confidence College can support integrated care implementation wherever it is happening. The project was developed with the help of many contributors and participation from Clinical experts, GP's and patients. Content has been developed through co-design sessions with patients and research interviews with clinicians.
Impact None to report as yet.
Start Year 2017
 
Description Parkinson's Excellence Network 
Organisation Parkinson's UK
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Co-chaired the inaugural London Parkinson's Excellence Network meeting; including overseeing the establishment of network working groups. AS is the North London lead for the Parkinson's Excellence Network, which involves chairing bimonthly meetings of professionals. The aim of the network is to promote collaboration between health and social care professionals, and patients groups, with the objective of transforming care for people affected by Parkinson's.
Collaborator Contribution Network working groups have selected to focus on the following areas: Advanced Care, Surgery for Parkinson's Disease, Integrated Care, Local Guidelines, and Research. The aim is that members of the working groups work together on these areas and feedback findings to the main network meetings.
Impact Formation of working groups to improve local service provision for patients with PD. The outputs and outcomes will evolve in due course but already there has been a wider distribution of guidelines for PD across London health care providers and joint working A map to improve access to PD-services in London is currently being planned.
Start Year 2015
 
Description Breakfast workshop in Brussels 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? Yes
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact The workshop trigger a number of further engagement activities by the EPDA with stakeholders at international level.

as above
Year(s) Of Engagement Activity 2014
URL http://www.epda.eu.com/en/projects/my-pd-journey/work-programme/european-inventory/?Opentab=c2,3#c2
 
Description Chaired Session at British Neuropsychiatric Institute 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Chaired Session at British Neuropsychiatric Institute
Year(s) Of Engagement Activity 2018
 
Description Collaboration with the European Parkinson's Disease Association 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? Yes
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact The project is ongoing. However, the preliminary results have already led to a presentation to members of the European Parliament, sparking several further engagement events with stakeholders and policy makers through the EPDA. An abstract to the Movement Disorders Society meeting has been submitted.

as above
Year(s) Of Engagement Activity 2014,2015
URL http://www.epda.eu.com/en/projects/my-pd-journey/work-programme/european-inventory/?Opentab=c2,2#c2
 
Description Depression in Parkinson's disease: From Epidemiology to Treatment. The Youdim lecture 2018, National Institute for Psychobiology in Israel (NIPI), Hebrew University, Jerusalem. 31st January 2018. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Depression in Parkinson's disease: From Epidemiology to Treatment. The Youdim lecture 2018, National Institute for Psychobiology in Israel (NIPI), Hebrew University, Jerusalem.
Year(s) Of Engagement Activity 2018
 
Description JPND/JPco-fuND symposium 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact This was a Symposium for Supported Projects from JPND, involving presentations, workshops and posters from all projects in the JPND initiative. The aim of the symposium was the exchange of information, challenges, results, and further discussions across the different areas of research, led by leaders in their respective, diverse fields in neurodegeneration. A vivid interchange, both during the workshops and in between stiumulated ensuing exchange of ideas and further collaboration. So far, this has resulted in the current organisation of a further meeting, and plans for the development of guidelines.
Year(s) Of Engagement Activity 2019
URL https://www.neurodegenerationresearch.eu/initiatives/annual-calls-for-proposals/closed-calls/call-fo...
 
Description Parkinson's London Excellence Network meeting on 11 October Queen Square House, Institute of Neurology, London WC1N 3BG 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Organisation and attendance at the Parkinson's Excellence Network meeting in the capacity of North London Lead.
Presented the Personalised Care for People with Parkinson's Disease: PD-Care study.
Year(s) Of Engagement Activity 2019
 
Description Presentation on pharmacological treatment of depression and anxiety in Parkinson's disease. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Presentation on pharmacological treatment of depression and anxiety in Parkinson's disease: Parkinson's Foundation meeting on Anxiety in Parkinson's Disease. Baltimore,
Year(s) Of Engagement Activity 2018
 
Description Presentation: Depression in Parkinson's disease: From Epidemiology to Treatment. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Depression in Parkinson's disease: From Epidemiology to Treatment. Cambridge University April 2018
Year(s) Of Engagement Activity 2018
 
Description Presentation: Psychiatric and cognitive features. Non-motor symptoms in Parkinson's disease. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Psychiatric and cognitive features. Non-motor symptoms in Parkinson's disease. International Meeting, Rostock, Germany March 2018
Year(s) Of Engagement Activity 2018
 
Description Training Video: The importance of good communication in a Parkinson's diagnosis: EPDA and PUK training video for doctors 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact The European Parkinson's Disease Association (EPDA) and Parkinson's UK have produced a film highlighting the importance of good communication when doctors give their patients a Parkinson's diagnosis; with Prof Anette Schrag chairing the patient group discussing the personal impact of diagnosis delivery.
Year(s) Of Engagement Activity 2011
URL https://www.youtube.com/watch?v=9DBA5D5Mx74