Exploring physical activity in people living with rare neurological conditions

Participant Information Sheet (PIS)

You are invited to participate in a research study being conducted by Prof Monica Busse (Cardiff University), Dr Gita Ramdharry (National Hospital for Neurology & Neurosurgery, UCLH), 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. With this survey, we would like to hear from you as we are interested in understanding:

- If you are generally physically active;
- If you feel sufficiently confident in engaging in physical activity;
- What the major barriers and possible solutions are in case you do not feel motivated or engaged.

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 two parts: About you (e.g. age) and About your physical activity (e.g. questions on whether you do physical activity, how often and your thoughts around being 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 experience in being physically active, and barriers that you may have faced to be physically active in your daily life.

Will the study involve any discomfort for me? If so, what will you do to rectify it?
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. Email: 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.



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.


About you

What is your gender? 

Prefer not to say  
Please, specify   
3. What is your age?
Prefer not to say   
Please, specify   
4. Which region do you live in?
South East England  
South West England  
Greater London  
East Midlands  
West Midlands  
North East England  
North West England  
Northern Ireland  
East of England  
Yorkshire & the Humber  

Which of the following best represents your ethnic heritage?

Other, please give details   
6. Which neurological condition have you been diagnosed with?
Ataxia (e.g. Friedreich’s ataxia, cerebellar ataxia, episodic ataxia, idiopathic ataxia)  
Hereditary spastic paraparesis  
Huntington’s disease  
Neuromuscular disease (e.g. myasthenia gravis, muscular dystrophy, myositis, polyneuropathies, mitochondrial disease)   
Motor neurone disease  
PSP (progressive supranuclear palsy)  
MSA (multiple systems atrophy)  
CBD (corticobasal degeneration)  
I don’t know  
Other, please specify   

What age were you when you noticed your first symptoms of the condition?

Can't remember  
Please, specify   
8. Which best describes your level of mobility? 
Walk with no assistance (or aid) as far as I need to  
Walk with no assistance (or aid), but distance is limited  
Walk with assistance (or aid) as far as I need to   
Walk with assistance (or aid), but distance is limited  
Use a wheelchair always  
Use a wheelchair sometimes  
Other, please give details   
9. Which aids for walking do you use? Tick as many as apply
Walk with the aid of orthotics, splints, braces or supports   
Walk with 1 stick  
Walk with 2 sticks  
Walk with 1 elbow crutch  
Walk with 2 elbow crutches  
Walk with rollator frame  
Walk with another person  
Walk with a pushchair or buggy  
Wheelchair that I propel with my hands  
Electric scooter  
Powered wheelchair  
Wheelchair that someone else pushes  
Functional Electrical Stimulation  
I am unable to leave my bed  
I do not use any mobility aids  
Other, please give details   
 If you ticked more than one, please state which is your primary form of assistance and why.

About your physical activity

Do you participate in physical activity (e.g. engaging in house chores, work, recreational activities or exercising) regularly (e.g. more than once a week)? Please see definition of physical activity above at the beginning of the survey.

Yes (please go to question 11)   
No (please go to question 13)  
Sometimes (please go to question 11)   

If you do, what do you do? Please, give details of type of activity, for how long and how often.


 Please, give details of: 1. Type of exercise or activity; 2. How long you do it for (minutes); 3. How often (how many times per week)

Do you do physical activity independently?

Yes (please, go to question 14)  
No (please, go to question 13)  
Sometimes (please, go to question 13)  

If not, can you describe what type of assistance you need in order to be physically active (e.g. help of a person or carer, walking aid, reminders such as apps, facility adaptations etc.).

 Please, provide details in this box:
14. 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
I am interested in keeping physically active
I need to be encouraged to be physically active
I have enough knowledge on the benefits of physical activity for my condition
I have had the opportunity to discuss physical activity and its benefits with a health care professional
I’m able to follow the advice about physical activity/exercise from health care professionals
I am confident about how to be physically active successfully
I am confident about how to be physically active safely
I feel I have enough resources (e.g. support, equipment) to be able to be physically active
I can easily access exercise facilities
I know where to seek support to be physically active if I need to
I can access support quickly to be physically active
I feel well supported by my community services to be physically active
 Please give details or comment here, if needed:
15. Is the support you receive to be physically active usually from: (please, tick all that apply)
General practitioner  
Local neurologist  
Local therapists (e.g. physiotherapy, occupational therapist)   
Local nurse  
Local exercise trainers  
Specialist neurologist  
Specialist therapists (e.g. physiotherapy, occupational therapist working in hospital)  
Specialist nurse  
I have not received any type of support  
Other (please specify)   
 Please give more information on WHERE you access support to be physically active and HOW OFTEN you receive it.

Where do you go to seek more information on physical activity and exercise?

Web pages  
Community initiatives  
Health care specialists  
Gym and exercise trainers   
Charity website and publications  
Research reports  
Guidelines (e.g. NHS guidelines)  
Courses and conferences  
Other, give details    

Do you experience challenges or difficulties in being physically active?

Yes (please go to question 18)  
No (please go to question 20)  
18. If you do experience challenges in being physicially active, please describe WHAT CHALLENGES you experience.
 Please give details in this box:

If you do experience challenges, please describe WHAT SUPPORT you need in order to be physically active.

 Please, give details in this box:

What solutions have you found to keep physically active?

 Please, give details in this box:
21. Please describe the type of physical activity or exercise you have found beneficial for you so far:
 Please, give details in this box:

Where do you access financial resources to help to cover the costs to be physically active?

Local funding schemes  
Self-funded (e.g. private group class)  
I don’t need financial support to engage in physical activity  
Other, please give details   
23. How do you monitor how active you are? Tick all that apply
I don’t monitor my 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)  
I am regularly monitored by health care professionals (e.g. nurse or physiotherapist)  
Monitoring using diaries, log books or attendance records   
Other, give details    

What have been the POSITIVE effects of being physically active for you?

 Please, give details in this box:

What have been the NEGATIVE effects of being physically active for you?

 Please, give details in this box: