WSO Post Stroke Spasticity Survey

Completing the survey

The World Stroke Organization has received funding from IPSEN to conduct a survey about knowledge of post-stroke spasticity and experience of treatment.

The findings of this survey will be shared with IPSEN. Both IPSEN and the World Stroke Organization will use the findings to inform our activities.

Taking part in this survey is voluntary and anonymous. Please do not put your name or address on the survey.

Purpose

· To find out about what survivors of stroke and carers know about post-stroke spasticity and where they learned about it.

· To better understand the availability of and access to post-stroke spasticity treatment.

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* 1. Demographics:

In which country do you live?

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* 2. What is your age?

18-24

25-34

35-44

45-54

55-64

65+

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* 3. What is your gender?

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* 4. I am

A survivor of stroke living with spasticity

A carer, friend or family member of a survivor of stroke living with spasticity

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* 5. When did you, your friend or family member experience a stroke? (the most recent if more than one stroke has been experienced)

Within the last 12 months

Within the last 3 years

Within the last 5 years

Within the last 10 years

More than 10 years ago

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* 6. What was your (if you experienced a stroke) or your friend’s/family member’s employment/education status before and after the stroke?

	Before stroke	After stroke
In full time education (school, college, or university)	In full time education (school, college, or university) Before stroke	In full time education (school, college, or university) After stroke
Employed	Employed Before stroke	Employed After stroke
Self Employed	Self Employed Before stroke	Self Employed After stroke
Unpaid care or looking after children or relatives	Unpaid care or looking after children or relatives Before stroke	Unpaid care or looking after children or relatives After stroke
Unable to work, including medically retired	Unable to work, including medically retired Before stroke	Unable to work, including medically retired After stroke
Retired	Retired Before stroke	Retired After stroke
Volunteer	Volunteer Before stroke	Volunteer After stroke

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* 7. Post-stroke spasticity knowledge:

At the time of your or your friend’s/family member’s stroke, how much do you agree with the following statements?

	Strongly agree	Agree	Neither agree nor disagree	Disagree	Strongly disagree	Not sure
I knew that spasticity is an effect of stroke	I knew that spasticity is an effect of stroke Strongly agree	I knew that spasticity is an effect of stroke Agree	I knew that spasticity is an effect of stroke Neither agree nor disagree	I knew that spasticity is an effect of stroke Disagree	I knew that spasticity is an effect of stroke Strongly disagree	I knew that spasticity is an effect of stroke Not sure
I knew how stroke can cause spasticity	I knew how stroke can cause spasticity Strongly agree	I knew how stroke can cause spasticity Agree	I knew how stroke can cause spasticity Neither agree nor disagree	I knew how stroke can cause spasticity Disagree	I knew how stroke can cause spasticity Strongly disagree	I knew how stroke can cause spasticity Not sure
I knew that spasticity can cause muscles to contract	I knew that spasticity can cause muscles to contract Strongly agree	I knew that spasticity can cause muscles to contract Agree	I knew that spasticity can cause muscles to contract Neither agree nor disagree	I knew that spasticity can cause muscles to contract Disagree	I knew that spasticity can cause muscles to contract Strongly disagree	I knew that spasticity can cause muscles to contract Not sure
I knew that spasticity can cause muscles to spasm	I knew that spasticity can cause muscles to spasm Strongly agree	I knew that spasticity can cause muscles to spasm Agree	I knew that spasticity can cause muscles to spasm Neither agree nor disagree	I knew that spasticity can cause muscles to spasm Disagree	I knew that spasticity can cause muscles to spasm Strongly disagree	I knew that spasticity can cause muscles to spasm Not sure
I knew how spasticity could be treated	I knew how spasticity could be treated Strongly agree	I knew how spasticity could be treated Agree	I knew how spasticity could be treated Neither agree nor disagree	I knew how spasticity could be treated Disagree	I knew how spasticity could be treated Strongly disagree	I knew how spasticity could be treated Not sure

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* 8. Since the time of your or your friend’s/family member’s stroke how has your knowledge changed?

	Increased	Decreased	Stayed the same
I know that spasticity is an effect of stroke	I know that spasticity is an effect of stroke Increased	I know that spasticity is an effect of stroke Decreased	I know that spasticity is an effect of stroke Stayed the same
I know how stroke can cause spasticity	I know how stroke can cause spasticity Increased	I know how stroke can cause spasticity Decreased	I know how stroke can cause spasticity Stayed the same
I know that spasticity can cause muscles to contract	I know that spasticity can cause muscles to contract Increased	I know that spasticity can cause muscles to contract Decreased	I know that spasticity can cause muscles to contract Stayed the same
I know that spasticity can cause muscles to spasm	I know that spasticity can cause muscles to spasm Increased	I know that spasticity can cause muscles to spasm Decreased	I know that spasticity can cause muscles to spasm Stayed the same
I know how spasticity can be treated	I know how spasticity can be treated Increased	I know how spasticity can be treated Decreased	I know how spasticity can be treated Stayed the same

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* 9. At the time of your or your friend’s/family member’s stroke where did you find information about post-stroke spasticity?

Doctors (verbally)

Allied health professionals (verbally)

Printed materials at hospital or clinic

Family and friends

Other stroke survivors

Internet searches

Stroke support organizations

Other (please specify)

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* 10. In the weeks and months since your or your friend’s/family member’s stroke have you found other sources of information in addition to those listed above? (Please give details)

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* 11. What specific information or resources would you find helpful in better understanding and managing spasticity? (Please give details)

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* 12. Post-stroke spasticity treatment:

Please state how much you agree with the following statements:

	Strongly agree	Agree	Neither agree nor disagree	Disagree	Strongly disagree	Not sure
Treatment could not be accessed because of a lack of information about where to go	Treatment could not be accessed because of a lack of information about where to go Strongly agree	Treatment could not be accessed because of a lack of information about where to go Agree	Treatment could not be accessed because of a lack of information about where to go Neither agree nor disagree	Treatment could not be accessed because of a lack of information about where to go Disagree	Treatment could not be accessed because of a lack of information about where to go Strongly disagree	Treatment could not be accessed because of a lack of information about where to go Not sure
Treatment could not be accessed because no transport was available	Treatment could not be accessed because no transport was available Strongly agree	Treatment could not be accessed because no transport was available Agree	Treatment could not be accessed because no transport was available Neither agree nor disagree	Treatment could not be accessed because no transport was available Disagree	Treatment could not be accessed because no transport was available Strongly disagree	Treatment could not be accessed because no transport was available Not sure
Treatment could not be accessed because of a lack of money to pay for it	Treatment could not be accessed because of a lack of money to pay for it Strongly agree	Treatment could not be accessed because of a lack of money to pay for it Agree	Treatment could not be accessed because of a lack of money to pay for it Neither agree nor disagree	Treatment could not be accessed because of a lack of money to pay for it Disagree	Treatment could not be accessed because of a lack of money to pay for it Strongly disagree	Treatment could not be accessed because of a lack of money to pay for it Not sure
Treatment could not be accessed because services were not available near by	Treatment could not be accessed because services were not available near by Strongly agree	Treatment could not be accessed because services were not available near by Agree	Treatment could not be accessed because services were not available near by Neither agree nor disagree	Treatment could not be accessed because services were not available near by Disagree	Treatment could not be accessed because services were not available near by Strongly disagree	Treatment could not be accessed because services were not available near by Not sure

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* 13. What spasticity therapy/treatment/support was available and did it help you or your friend/family member?

	Yes, and this helped	Yes, but it did not help me	No, but I would have liked this	No, because I had no need for this	No, because I declined this	Not sure
Physiotherapy	Physiotherapy Yes, and this helped	Physiotherapy Yes, but it did not help me	Physiotherapy No, but I would have liked this	Physiotherapy No, because I had no need for this	Physiotherapy No, because I declined this	Physiotherapy Not sure
Botulinum toxin type A	Botulinum toxin type A Yes, and this helped	Botulinum toxin type A Yes, but it did not help me	Botulinum toxin type A No, but I would have liked this	Botulinum toxin type A No, because I had no need for this	Botulinum toxin type A No, because I declined this	Botulinum toxin type A Not sure
Medication	Medication Yes, and this helped	Medication Yes, but it did not help me	Medication No, but I would have liked this	Medication No, because I had no need for this	Medication No, because I declined this	Medication Not sure
Splinting and casting	Splinting and casting Yes, and this helped	Splinting and casting Yes, but it did not help me	Splinting and casting No, but I would have liked this	Splinting and casting No, because I had no need for this	Splinting and casting No, because I declined this	Splinting and casting Not sure
Contact with a support organisation or group	Contact with a support organisation or group Yes, and this helped	Contact with a support organisation or group Yes, but it did not help me	Contact with a support organisation or group No, but I would have liked this	Contact with a support organisation or group No, because I had no need for this	Contact with a support organisation or group No, because I declined this	Contact with a support organisation or group Not sure

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* 14. Post-stroke spasticity: friends, family and community response.

How much do you agree with the following statements?

	Strongly agree	Agree	Neither agree nor disagree	Disagree	Strongly disagree	Not sure
There is a lack of understanding about the cause of spasticity among my friends and family	There is a lack of understanding about the cause of spasticity among my friends and family Strongly agree	There is a lack of understanding about the cause of spasticity among my friends and family Agree	There is a lack of understanding about the cause of spasticity among my friends and family Neither agree nor disagree	There is a lack of understanding about the cause of spasticity among my friends and family Disagree	There is a lack of understanding about the cause of spasticity among my friends and family Strongly disagree	There is a lack of understanding about the cause of spasticity among my friends and family Not sure
There is a lack of understanding about the cause of spasticity from employers and in the workplace	There is a lack of understanding about the cause of spasticity from employers and in the workplace Strongly agree	There is a lack of understanding about the cause of spasticity from employers and in the workplace Agree	There is a lack of understanding about the cause of spasticity from employers and in the workplace Neither agree nor disagree	There is a lack of understanding about the cause of spasticity from employers and in the workplace Disagree	There is a lack of understanding about the cause of spasticity from employers and in the workplace Strongly disagree	There is a lack of understanding about the cause of spasticity from employers and in the workplace Not sure
People with spasticity experience discrimination from employers and in the workplace	People with spasticity experience discrimination from employers and in the workplace Strongly agree	People with spasticity experience discrimination from employers and in the workplace Agree	People with spasticity experience discrimination from employers and in the workplace Neither agree nor disagree	People with spasticity experience discrimination from employers and in the workplace Disagree	People with spasticity experience discrimination from employers and in the workplace Strongly disagree	People with spasticity experience discrimination from employers and in the workplace Not sure
There is a lack of understanding about the cause of spasticity in the general population	There is a lack of understanding about the cause of spasticity in the general population Strongly agree	There is a lack of understanding about the cause of spasticity in the general population Agree	There is a lack of understanding about the cause of spasticity in the general population Neither agree nor disagree	There is a lack of understanding about the cause of spasticity in the general population Disagree	There is a lack of understanding about the cause of spasticity in the general population Strongly disagree	There is a lack of understanding about the cause of spasticity in the general population Not sure
People with spasticity experience discrimination from the general population	People with spasticity experience discrimination from the general population Strongly agree	People with spasticity experience discrimination from the general population Agree	People with spasticity experience discrimination from the general population Neither agree nor disagree	People with spasticity experience discrimination from the general population Disagree	People with spasticity experience discrimination from the general population Strongly disagree	People with spasticity experience discrimination from the general population Not sure

WSO Post Stroke Spasticity Survey

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* 1. Demographics:In which country do you live?

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* 2. What is your age?

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* 3. What is your gender?

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* 4. I am

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* 5. When did you, your friend or family member experience a stroke? (the most recent if more than one stroke has been experienced)

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* 6. What was your (if you experienced a stroke) or your friend’s/family member’s employment/education status before and after the stroke?

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* 7. Post-stroke spasticity knowledge:At the time of your or your friend’s/family member’s stroke, how much do you agree with the following statements?

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* 8. Since the time of your or your friend’s/family member’s stroke how has your knowledge changed?

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* 9. At the time of your or your friend’s/family member’s stroke where did you find information about post-stroke spasticity?

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* 10. In the weeks and months since your or your friend’s/family member’s stroke have you found other sources of information in addition to those listed above? (Please give details)

Question Title

* 11. What specific information or resources would you find helpful in better understanding and managing spasticity? (Please give details)

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* 12. Post-stroke spasticity treatment:Please state how much you agree with the following statements:

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* 13. What spasticity therapy/treatment/support was available and did it help you or your friend/family member?

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* 14. Post-stroke spasticity: friends, family and community response.How much do you agree with the following statements?

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* 15. Is there anything else you would like to tell us about your or your friend's/family member's experience

* 1. Demographics:

In which country do you live?

* 7. Post-stroke spasticity knowledge:

At the time of your or your friend’s/family member’s stroke, how much do you agree with the following statements?

* 12. Post-stroke spasticity treatment:

Please state how much you agree with the following statements:

* 14. Post-stroke spasticity: friends, family and community response.

How much do you agree with the following statements?