Co-designing system improvement for Atypical Parkinsonian Syndromes
| ISRCTN | ISRCTN11510077 |
|---|---|
| DOI | https://doi.org/10.1186/ISRCTN11510077 |
| IRAS number | 347277 |
| Secondary identifying numbers | RHM NEU0483, CPMS 63912, NIHR207984 |
- Submission date
- 02/09/2025
- Registration date
- 10/10/2025
- Last edited
- 10/10/2025
- Recruitment status
- Not yet recruiting
- Overall study status
- Ongoing
- Condition category
- Nervous System Diseases
Plain English summary of protocol
Background and study aims
People living with Atypical Parkinsonian Syndromes (APS) often experience complex symptoms that affect movement, thinking, mood, vision, eating, and communication. These individuals quickly become reliant on family and carers and require specialised clinical care to maintain their quality of life and avoid unnecessary hospital admissions. However, access to services varies significantly across the UK, leading to inequalities in care. This study aims to understand what aspects of current health and social care provision influence these inequalities, how service configuration affects people's ability to live well with APS, and how care can be improved within the existing system.
Who can participate?
1. People living with APS
2. Carers of people with APS
3. Health, social care and voluntary organisation professionals involved in supporting people with APS
What does the study involve?
The study will:
1. Review policies, guidelines, and services relevant to people with APS (a realist review).
2. Interview people with APS and their carers about their experiences accessing and navigating services.
3. Speak to professionals about the challenges of delivering care.
4. Map networks and services available in different locations, using a system design approach.
5. Hold two workshops with participants and collaborators to explore solutions and co-design a questionnaire for future research.
6. In the long term, develop a new model of care based on findings, to inform a follow-on evaluation of practical strategies.
What are the possible benefits and risks of participating?
Benefits:
1. Participants can contribute to improving services for people with APS.
2. Carers and patients can share their experiences to help influence positive change.
3. Professionals may help identify and remove barriers in care provision.
Risks:
1. Discussing personal experiences may be emotionally challenging.
2. Time commitment may be a burden for some participants.
Where is the study run from?
University Hospital Southampton NHS Foundation Trust (UK)
When is the study starting and how long is it expected to run for?
March 2025 to February 2027
Who is funding the study?
National Institute for Health and Care Research (NIHR) (UK)
Who is the main contact?
Dr Annalisa Casarin, annalisa.casarin@nihr.ac.uk
Contact information
Public, Scientific, Principal investigator
Centre for Research in Public Health and Community Care
College Lane Campus
University of Hertfordshire
Hatfield
AL10 9AB
United Kingdom
 ORCID ID |
0000-0002-9972-9701 |
|---|---|
| Phone | +44 (0)7946077082 |
| annalisa.casarin@nihr.ac.uk |
Study information
| Study design | Mixed methods, realist review (qualitative), system thinking, discreet choice experiment (quantitative) |
|---|---|
| Primary study design | Observational |
| Secondary study design | Mixed methods, realist review (qualitative), system thinking, discreet choice experiment (quantitative) |
| Study setting(s) | Community |
| Study type | Quality of life |
| Participant information sheet | Not available in web format, please use the contact details to request a participant information sheet |
| Scientific title | Co-designing improvements to systems of care and support to tackle inequality of access for people with Atypical Parkinsonian Syndromes: combining a system approach and realist review to inform a discrete choice experiment |
| Study acronym | Improve APS |
| Study objectives | Aims: 1. To explore the diversity of experiences that people with APS and their carers have with access and use of health and care services, understanding the context and complexity of provision in specific locations in England 2. To co-design system improvement recommendations based on available assets that can address people’s needs and preference, reduce disparities, and improve the responsiveness of health and social care in providing coordinated services This will be achieved by: 1. Building programme theories of what works, for whom and why using realist methodology 2. Asking people affected to share their experience of access and navigation of the current system to create a map of networks and services, guided by the Engineering Better Care system design toolkit 3. Understanding the current system strengths and involve service users and providers to create a questionnaire for a follow-up study using a Discrete Choice Experiment approach 4. To disseminate results co-creating material with public contributors |
| Ethics approval(s) |
Submitted 11/09/2025, Wales REC 6 (Meetings are held remotely via Zoom, -, -, United Kingdom; +44 (0)2922940911, +44 (0)2922 940954, +44 (0)2922 941090; Wales.REC6@wales.nhs.uk), ref: 25/WA/0299 |
| Health condition(s) or problem(s) studied | Atypical Parkinsonian Syndromes |
| Intervention | The project will be conducted over 24 months. It combines realist methodology with an engineering-informed systems approach to understand the factors affecting the provision of care and support to people affected by APS. This approach will enable us to understand what works, for whom and why in six areas of England. Exploration of inequalities of access will provide the knowledge base for a future preparation and evaluation of system improvement guidance. |
| Intervention type | Other |
| Primary outcome measure | Diversity of experience measured using interviews and thematic analysis at baseline |
| Secondary outcome measures | Health and social care service utilization, informal care, accommodation and living situation, employment and productivity, education measured using the Client Service Receipt Inventory domains at baseline |
| Overall study start date | 01/03/2025 |
| Completion date | 28/02/2027 |
Eligibility
| Participant type(s) | Patient, Health professional, Carer |
|---|---|
| Age group | Adult |
| Lower age limit | 18 Years |
| Sex | All |
| Target number of participants | 56 |
| Key inclusion criteria | 1. People with mental capacity and ability to communicate. 2. People providing consent to participate of all genders, age, ethnicity, socio economic background, location. Patients’ cohort: People with mental capacity (according to carer/family) and ability to communicate, affected by APS, selected at different stages: 1. People at a moderate stage of the APS disease, 2-3 years from diagnosis, to capture information regarding diagnosis and initial care and referrals, and to obtain their views while still able to communicate. 2. People at later stage of the APS disease, >3 years. Carers’ cohort: 1. Defined as someone who cares for, supports or provides help to someone affected by APS, either family member, relative, paid carer, close friend or neighbour on a regular basis for at least 2 years. 2. Carers of deceased people (<1 year to avoid recall bias) in order to capture information about the majority of the pathway through the care system. 3. Carers able to represent their relative/employer and consenting to also share their own experience of caring for people with APS. Health care, social care and charity staff cohort: Staff with or without experience of liaising with people affected by APS, but aware of barriers and facilitators of access to services for people with APS. |
| Key exclusion criteria | 1. People with multi-morbidities that affect function (mild cognitive impairment, dementia, speech and language impairment, frailty), other conditions that would prevent participations to the study. 2. People who refuse consent after initial meeting or during the study. |
| Date of first enrolment | 03/11/2025 |
| Date of final enrolment | 31/12/2026 |
Locations
Countries of recruitment
- England
- United Kingdom
Study participating centre
Tremona Road
Southampton
SO16 6YD
United Kingdom
Sponsor information
Hospital/treatment centre
Ground Floor, Duthie Building
MP138, Southampton General Hospital
Tremona Road
Southampton
SO16 6YD
England
United Kingdom
| Phone | +44 (0)23 8120 5044 |
|---|---|
| Sponsor@UHS.NHS.UK | |
| Website | http://www.uhs.nhs.uk/home.aspx |
"ROR" |
https://ror.org/0485axj58 |
Funders
Funder type
Government
Government organisation / National government
- Alternative name(s)
- National Institute for Health Research, NIHR Research, NIHRresearch, NIHR - National Institute for Health Research, NIHR (The National Institute for Health and Care Research), NIHR
- Location
- United Kingdom
Results and Publications
| Intention to publish date | |
|---|---|
| Individual participant data (IPD) Intention to share | Yes |
| IPD sharing plan summary | Stored in publicly available repository |
| Publication and dissemination plan | This project will generate the following outputs with potential utility to other researchers: 1. Realist review and synthesis of literature on policies, guidance, and examples of provision of services for people with APS. It will be available as protocol and as review summary as soon as completed and submitted to publication into realist evaluation/service improvement/policy journals. 2. Transcripts of interviews/focus groups and qualitative data analysis: when data collection will be completed, these will be stored on encrypted files located in the sponsor servers, plus will be made available (to be explored further) as requested by the funder, e.g., through online open access repository. They will be anonymised and made available, with consent by study participants. 3. System mapping: a publication will explain how the data collected contributed to the creation of the system map of networks. This material will be of interest to journals exploring system methodologies and service improvement. 4. Workshops transcripts: as above, transcripts will be stored as per sponsor regulations and available via an online open access repository. 5. Overall process and results: a creative galleria (published on the sponsor/funder webpages or with a specific DOI) will show the overall process and results, it will be publicly available and printable for participants and the public who may not be digitally literate. It will be available at study completion. 6. Public and professional collaborators will be invited to disseminate results via publications, reports and conferences related to methodological approaches, care services, rare diseases, integrated care, and long-term neurological conditions. Newsletters for special interest groups and professionals. 7. Output will also include feedback to participants (via blogs, feedback materials, charity websites, support meetings attendance), service users and providers (clinical and health & social care services conferences), producing lay material and participating in charities’ events for the dissemination of study results to the wider condition-specific community and the public. |
| IPD sharing plan | Transcripts of interviews/focus groups and qualitative data analysis: when data collection is completed, these will be stored on encrypted files located in the sponsor servers, plus will be made available (to be explored further) as requested by the funder, e.g., through online open access repository. They will be anonymised and made available, with consent by study participants. |
Editorial Notes
03/09/2025: Study's existence confirmed by the NIHR.
