Adults with SMA Survey
A survey to assist our application to the government for access to treatment for adults with SMA.
Email address *
1. Please tell us your name ( this will be kept confidential and you will not be identified by the answers you respond with) *
Your answer
2. What is your date of birth ?
MM
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DD
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YYYY
3. What is your postcode?
Your answer
4. At what age were you DIAGNOSED with SMA?
5. Was your diagnosis of SMA confirmed by a genetic test?
6. Do you know if you have 5q SMA?
7. When you were genetically tested to have SMA, was your diagnosis confirmed to be 5q SMA?
8. If you haven’t had genetic test to confirm 5q SMA, would you be willing to have one now?
8a. If no, what would prompt you to consider this in the future?
Your answer
9. What Type of SMA were you diagnosed to have?
10. If a treatment (e.g. SPINRAZA) was reimbursed by the Australian government (under the Pharmaceutical Benefits Scheme - PBS*) for patients who are 19 years and older, would you consider accessing this kind of treatment? *The Pharmaceutical Benefits Scheme (PBS) is a program of the Australian Government that provides subsidised prescription drugs to residents of Australia, as well as certain foreign visitors covered by a Reciprocal Health Care Agreement.
10a. If no, what would prompt you to consider treatment in the future?
Your answer
11. How far would you travel to a hospital that is offering treatment?
12. If there was a clinical trial offered in Australia for adult patients, How far would you be willing to travel to gain access to the clinical trial?
13. How would you currently describe your functional strength?
13a. Are you able to self transfer between your wheelchair and another chair?
13b. If yes, do you find this challenging?
13c. Have you had scoliosis surgery? If so at what age?
Your answer
14. In your day to day life, what do you find the most challenging to do?
Your answer
14b. Do you have the assistance of a carer? If so How many hours a day? days a week? If full-time care, occasional care, specific activities
Your answer
15. If treatment was available to you, what improvements would you like to see in these day to day challenges?
Your answer
16. Have you contacted your local Federal member of Parliament about this issue?
17. If no, would you be willing to make an appointment to see them?
18. If you could do something to assist yourself to gain access to treatment what would that be? (check all that you would be prepared to do )
19. Who is the primary doctor you use for your SMA clinical management? (Neurologist, GP, co manages with specialist/GP)
Your answer
19a. How often do you see your neurologist?
19b. If you see a neurologist, are they aware of Spinraza?
19c. Has your neurologist discussed Spinraza with you?
20. What types of benefits would you hope to see if you were able to access Spiranza
Your answer
21. Do you expect there to be any difficulties or adverse events with your use of Spiranza
Your answer
22. Would you attend an information session/ advocacy meeting in your state about access to treatment?
22. Any other comments you would like to add?
Your answer
A copy of your responses will be emailed to the address you provided.
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