Exploring care pathways on physical activity in rare neurological conditions

Participant Information Sheet (PIS)
You are invited to participate in a research study being conducted by Dr Gita Ramdharry (National Hospital for Neurology & Neurosurgery, UCLH), Prof Monica Busse (Cardiff University), Dr Valentina Buscemi, Prof Annette Boaz, Prof Helen Dawes, Prof Thomas Jaki, Prof Fiona Jones, Prof Jonathan Marsden, Prof Rebecca Playle, Prof Mike Robling, Prof Lynne Rochester, Prof Lorna Paul, Rachel Breen, Elizabeth Randell.

Project Summary
The PARC (Physical Activity for people with Rare neurological Conditions) programme development work is currently gathering information prior to developing the PARC intervention for the next stage of funding. The PARC intervention will be a self-management program to support physical activity for people with rare neurological diseases, including ataxias (e.g. Friedreich’s ataxia), hereditary spastic paraparesis, Huntington’s disease, neuromuscular diseases (e.g. polyneuropathies, myasthenia and muscular dystrophies), motor neurone disease, atypical Parkinsonisms. We would like to hear from you as we are interested in understanding if and how you support physical activity for people with these conditions, in the context of your service. This information will help us to understand clinicians’ experiences and potential challenges faced in supporting physical activity for people with rare neurological conditions.

Physical activity, according to the World Health Organisation definition, is described as any bodily movement produced by the muscles that requires us to expend energy. Physical activity includes exercise as well as other activities which involve bodily movement and are done as part of playing, working, active transportation, house chores and recreational activities. Exercise is a subcategory of physical activity that is planned, structured, repetitive, and purposeful in the sense that the aim is to improve or maintain fitness.

What will I be asked to do?
This research is a survey based on multi-choice and open questions. The survey is also divided in three parts: About you (e.g. age, profession), About your service (questions on how often you see patients with rare neurological conditions), Physical activity support (questions on whether and how you provide support to be physically active). Your consent to participate is given after reading this Participant Information Sheet and clicking on the ‘I agree to take part in this study’ button at the bottom of the page.

How much of my time will I need to give?
The online survey will take about 15 minutes to complete.

What specific benefits will I receive for participating?
Participating in the study will provide you with the opportunity to reflect on your practice, specifically on the level of support you provide on physical activity to patients with rare conditions, and your beliefs and experience around this topic.

Will the study involve any discomfort for me?
Participation is unlikely to involve any discomfort for you. However, if you do start to feel uncomfortable at any stage of the study, you will be free to take a break or terminate the online activity at any time without repercussion.

How do you intend to publish the results?
Please be assured that only the researchers will have access to the raw data you provide and that all your data will be non-identifiable. The findings of the research will be published in peer-reviewed journals and presented at seminars and conferences.

Can I withdraw from the study?
Participation is entirely voluntary: you are not obliged to be involved and, if you do participate, you can withdraw at any time without giving any reason and without any consequences.

Can I tell other people about the study?
Yes, you can tell other people about the study by providing them with the research manager’s contact details (see below). They can contact the research manager to discuss their participation in the research project and obtain an information sheet.

What if I require further information?
Please contact Dr Valentina Buscemi should you wish to discuss the research further before deciding whether or not to participate. E-mail: valentina.buscemi@nhs.net

What if I have a complaint?
This study has been approved by the Research Ethics Committee of School of Medicine, Cardiff University. The Approval number is 19/60. If you have any complaints or reservations about the ethical conduct of this research, you may contact the Dr James White, Senior Lecturer in Public Health, Cardiff University, e-mail address: whitej11@cardiff.ac.uk. Any issues you raise will be treated in confidence and investigated fully, and you will be informed of the outcome.

MSA = Mutiple System Atrophy
PSP = Progressive Supranuclear Palsy
CBD = Cortico Basal Degeneration
MND = Motor Neurone Disease
HSP = Hereditary Spastic Paraplegia
MG = Myasthenia Gravis


I confirm that I have read the information for the above study. I have had the opportunity to consider the information, ask questions and have had these answered satisfactorily.

I understand that my participation is voluntary and that I am free to withdraw at any time without giving any reason.

I agree to take part in this study.

2. About you

What is your profession?
Medical doctor  
Occupational therapist  
Support worker/unregistered health care worker  
Other, give details here   
 Please, specify job title and specialisation

Where do you work?

South East England  
South West England  
Greater London  
East Midlands  
West Midlands  
East of England  
North East England  
North West England  
Yorkshire & the Humber   
Northern Ireland   

What setting do you work in? (select all that apply)

Primary care  
Community team  
Secondary care  
Rehabilitation unit  
Regional centre  
Specialist services  
Third sector  
Other (please specify)   

How long have you been in your current speciality for?

0-5 years  
6-10 years  
More than 10 years  

About your service

What proportion of the people that you usually care for have a rare neurological condition (Ataxias, e.g. Friedreich’s ataxia, hereditary spastic paraparesis, Huntington’s disease, motor neurone disease, atypical Parkinsonisms and neuromuscular diseases, such as polyneuropathies, myasthenia and muscular dystrophies)?

Up to 25%  
Up to 50%  
Up to 75%  
Up to 100%  
I do not care for people with rare neurological conditions [please, close survey]  
7. Which rare neurological conditions do you work with ? (select all that apply)
Huntington’s Disease  
Neuromuscular disease (e.g. myasthenia gravis, muscular dystrophy, myositis, polyneuropathies, mitochondrial disease)  
Atypical Parkinson’s (MSA, PSP, CBD)  
Other (please, specify)   
8. How frequently do you care for patients with rare neurological conditions?
Frequently (at least once per week)   
Occasionally (at least once per month)   
Infrequently (less than once per month)  

How frequently do you or your team follow up people with rare neurological conditions?

Six monthly   
Greater than 1 year  
Open access or self-referral  
Discharged after a period of treatment/rehabilitation & will require re-referral after a period of input   
Other (please specify)   
 Please give more information (i.e. describe your service and how you manage review & follow up):

Please, tick the option on the table (ranging from strongly disagree to I don’t know) that most suits you for each item:


 Strongly disagreeDisagreeNeither disagree or agreeAgreeStrongly agreeI don't know
The service I work in has the required expertise to support people with rare neurological diseases to be physically active
The service I work in is appropriately resourced to support people with rare neurological disease to be physically active (e.g. enough staff, equipment)
The service I work in is responsive and can see or contact people with rare neurological conditions quickly if needed
 Please give more information or comment here if needed:

About physical activity support

Do you give advice regarding physical activity to your patients with rare neurological conditions?

Yes, routinely to most of my patients   
Yes, only if they request information regarding physical activity   
Yes, only to patients that I think would benefit from physical activity   
Yes, but only with certain conditions   
No, I do not recommend or give advice about physical activity to my patients (please go to question 13)  
12. To help us understand your answer, please, let us know when you are more likely to provide advice to your patients with rare neurological conditions:
13. Who do you think should be giving advice on physical activity? (select all that apply)
Medical doctor   
Occupational therapist  
Exercise instructor or exercise physiologist   
Support worker/unregistered health care worker   
Other (please specify)   
 Please give more information or comment here if needed:
14. Can you estimate to what percentage of your patients with rare neurological conditions you give advice about physical activity?
15. What interventions do you use to support people to be physically active? (select all that apply)
Structured exercise programme  
Setting goals around physical activity  
Supporting/facilitating new activities in the community  
Supply education materials  
Signposting to online resources  
Signposting to community exercise initiatives  
Run exercise classes  
Educate carers and exercise professionals to support the person  
Set up activities at home  
Other, give details    
16. How do you monitor how active your patients are? (select all that apply)
I don’t monitor their activity, but I think it is important  
I don’t believe monitoring is necessary  
Monitoring using online applications (Apps)  
Smart-watches and step counters (e.g. Fitbits)   
Monitoring using diaries, log books or attendance records   
Monitoring using patient feedback   
Other, please give details    
17. Please, tick the option (ranging from strongly disagree to I don’t know) that most suits you for each item:
 Strongly disagreeDisagreeNeither disagree or agreeAgreeStrongly agreeI don’t know
Patients with rare neurological conditions should be encouraged to be physically active
There is a lack of evidence for health professionals to promote exercise to patients with rare neurological conditions
I am sufficiently trained to give advice and/or support to people with rare neurological conditions
I am confident that I can advise and/or support people with rare neurological conditions to be physically active
If a person with a rare neurological condition requires support to be more physically active, I know where and/or who to refer to
 Please, comment here if needed:

Do you experience any challenges or barriers to supporting people with rare neurological conditions to be physically active? E.g. aspects of the disease, constraints of service etc.

Yes (If yes, please provide some examples below)  
 Example of challenges or barriers:
19. What strategies have you found to successfully engage people with rare neurological conditions in physical activity? Please describe in the box below:
20. Where do you go to seek more information on physical activity and exercise for people with rare neurological diseases? (select all that apply)
Peer reviewed articles  
Systematic reviews  
Charity websites and publications  
Online resources  
Courses and conferences  
Other, give details