ACSMA survey - Gauging access to INR self-monitoring

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* 1. What of the following best describes you?

Adult long-term warfarin user

Partner or carer of an adult long-term warfarin user

Parent, guardian or carer of a long-term warfarin user who is less than 18 years of age

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* 2. What is your postcode?

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* 3. How do you monitor your INR blood levels?

I regularly go to the GP surgery to have a blood test

I regularly go to an anticoagulation clinic at the hospital to have a blood test

I regularly go to my pharmacist to have a blood test

I self-test my blood at home with an INR self-monitoring device

I self-manage my blood at home and adjust my own warfarin depending on the result

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* 4. If you are self-monitoring your INR, how long have you been doing this for?

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* 5. If you are self-monitoring your INR, how often do you attend your GP/hospital for a comparative test?

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* 6. If you are not self-monitoring your INR, why is that?

I’ve never heard of self-monitoring

I don’t know if I am suitable for self-monitoring

My healthcare professional will not allow me to self-monitor or support me if I decide to do so

I cannot afford to purchase the self-monitoring equipment

I don't feel sufficiently confident to be able to self-monitor

I’ve been told that self-monitoring is not allowed for legal reasons

I am happy visiting the clinic

Not applicable

Other (please specify)

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* 7. If you are not self-monitoring your INR, how often do you usually go to have your INR blood levels checked?

Once a week

Once a fortnight

Once a month

Once every two months

Less than once a quarter

Don’t know

Not applicable

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* 8. If you have been told that you cannot self-monitor your INR, who told you this?

My GP

My Specialist Anticoagulation Nurse

My Primary Care Trust or Clinical Commissioning Group

My hospital Consultant

My hospital outpatient clinic

My pharmacist

Not applicable

Other (please specify)

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* 9. If you are self-monitoring your INR, do you also self-manage your condition (adjusting your own warfarin dosage)?

Yes

Not applicable

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* 10. If no, why is that?

I didn’t know that self-management was allowed

I don’t know if I am suitable for self-management

My healthcare professional will not allow me to self-manage

I don't feel sufficiently confident to be able to self-manage

I’ve been told that self-management is not allowed for legal reasons

Not applicable

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* 11. If you are self-monitoring your INR, does your GP prescribe you test strips?

Yes

No – I purchase them myself

My GP has told me that they are not allowed to prescribe the test strip

Not applicable

Other (please comment)

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* 12. When you go to have your INR monitored, how much time does it take in total (from the time you leave home/work/school until you get back – not including any errands on the way)?

Up to ½ hour

½ hour to one hour

1 to 2 hour

2-3 hours

3-4 hours

More than 4 hours

Don’t know

Not applicable

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* 13. When you go have your INR blood test at the clinic, surgery or pharmacist, how much does this cost (taking into account everything from fuel to parking to any loss in wages or medical costs you might incur)?

No cost

Up to £10

£11-£25

£26-£50

£51-£75

£75-£100

More than £100

Don’t know

Not applicable

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* 14. If you are not self-monitoring, what best describes your attitude towards visiting the GP surgery, pharmacy or clinic to have your INR level monitored?

It’s very inconvenient, and I would rather I didn’t have to do it

It’s very unpleasant

It restricts my freedom

I don’t mind, but I wish it didn’t take up so much time

It gets me out of the house

I like going because I see other people

I like going because it’s reassuring to speak to the doctor

Not applicable

Other (please specify)

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* 15. What do you think are/would be the main benefits of self-monitoring your INR using a portable self-monitoring device? (Check all that apply)

Freedom/independence

Allow me to test while away from home (e.g. on holiday)

Gives me improved control over my condition

Reduced clinic waiting time

Reduced travel time to hospital/clinic/surgery

No need to take time off from work/school

Reduce risk of adverse events e.g. major bleed or stroke

Reduces any worry about adverse events (e.g. after eating meal out/after flying, etc)

Means I don’t have to have intravenous blood tests

Gives me quick results

None of these – I don’t think there would be any benefits

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* 16. How much would you expect to pay for a portable self-monitoring device?

£399

£299

£199

£99

None of the above (please comment below)

Other (please specify or comment if none of the above selected)

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* 17. What features would you like to see on a portable self-monitoring device? e.g wireless connection? smaller?

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* 18. Would you be interested in being added to the mailing list of the AntiCoagulation Self-Monitoring Alliance? If so, please complete your details below

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* 1. What of the following best describes you?

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* 2. What is your postcode?

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* 3. How do you monitor your INR blood levels?

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* 4. If you are self-monitoring your INR, how long have you been doing this for?

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* 5. If you are self-monitoring your INR, how often do you attend your GP/hospital for a comparative test?

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* 6. If you are not self-monitoring your INR, why is that?

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* 7. If you are not self-monitoring your INR, how often do you usually go to have your INR blood levels checked?

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* 8. If you have been told that you cannot self-monitor your INR, who told you this?

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* 9. If you are self-monitoring your INR, do you also self-manage your condition (adjusting your own warfarin dosage)?

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* 10. If no, why is that?

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* 11. If you are self-monitoring your INR, does your GP prescribe you test strips?

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* 12. When you go to have your INR monitored, how much time does it take in total (from the time you leave home/work/school until you get back – not including any errands on the way)?

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* 13. When you go have your INR blood test at the clinic, surgery or pharmacist, how much does this cost (taking into account everything from fuel to parking to any loss in wages or medical costs you might incur)?

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* 14. If you are not self-monitoring, what best describes your attitude towards visiting the GP surgery, pharmacy or clinic to have your INR level monitored?

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* 15. What do you think are/would be the main benefits of self-monitoring your INR using a portable self-monitoring device? (Check all that apply)

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* 16. How much would you expect to pay for a portable self-monitoring device?

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* 17. What features would you like to see on a portable self-monitoring device? e.g wireless connection? smaller?

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* 18. Would you be interested in being added to the mailing list of the AntiCoagulation Self-Monitoring Alliance? If so, please complete your details below

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* 19. Would you like to know more about self-monitoring? If so, please go to www.acsma.org.uk or complete your details below