Living with Narcolepsy Survey
This survey is designed to find out what living with Narcolepsy is like in Australia. We want to know people's experiences including the challenges they face. The information this survey collects will help us with our advocacy, education and awareness initiatives. Therefore the more information we have the better we will be able to assist our community.

The survey is completely anonymous. You can answer freely. We have no way of knowing who you are. That said, we are committed to ensuring your privacy at all times. Hypersomnolence Australia and Narcolepsy Australia have privacy policies addressing issues related to the use, collection, security and access of personal information.
Hypersomnolence Australia: https://www.hypersomnolenceaustralia.org.au/privacypolicy
Narcolepsy Australia: http://www.narcolepsyaustralia.org.au/terms--conditionsprivacy-policy.html

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1. What state/territory do you live in? *
2. What is your gender? *
3. How old are you? *
4. Approximately what age were you when you first noticed Narcolepsy symptoms? *
5. What age were you when you were diagnosed with Narcolepsy? *
6. Who diagnosed you with Narcolepsy? *
7. What is the name of the doctor that diagnosed you with Narcolepsy? *
This helps us get an idea of who the doctors are in Australia that have had at least one patient with Narcolepsy.
8. Would you say the doctor that diagnosed you had a good understanding of Narcolepsy? *
9. Did the doctor that diagnosed you with Narcolepsy do a good job of explaining it to you, including medication options and possible side effects or contraindications etc? *
10. If your current sleep specialist (or neurologist etc) is different to the one that diagnosed you with Narcolepsy, what is the name of your current doctor? *
This helps us get an idea of who the doctors are in Australia that have had at least one patient with Narcolepsy. Write N/A if it is the same as the doctor that diagnosed you.
11. Would you say that your current doctor has a good understanding of Narcolepsy? *
12. Has your current doctor done a good job of explaining Narcolepsy to you including medication options and possible side effects and contradictions etc? *
13. Please feel free to share with us your experiences with the doctors you have seen regarding Narcolepsy.
14. Which of the following symptoms do you regularly experience if you do not take medication (prescribed for Narcolepsy). *
Required
15. Have you also been diagnosed with another sleep disorder? *
Before marking "other" and adding another condition please check it is not already listed.
Required
16. What medication/s do you currently take for Narcolepsy? *
Before marking "other" and adding another medication please check it is not already listed.
Required
17. What is the current dose of your medication/medications?
18. What side effects do you experience with the medication you are currently taking for Narcolepsy? *
Please only tell us about the side effects you *know* are caused by the medication/s you take for Narcolepsy ie: if you stop the medication the side effects go away
Required
19. What medication/s have you tried in the past for Narcolepsy? *
Before marking "other" and adding another medication please check it is not already listed.
Required
20. What was the main reasons for discontinuing this medication? *
Before marking "other" and adding another reason please check it is not already listed.
Required
21. What side effects did you experience with any of the medications you mentioned in question 18 (ie: not the medication you are currently taking)? *
Please only tell us about the side effects you *know* were caused by the medication/s you took for IH ie: when you stopped the medication the side effects went away
Required
22. Please feel free to tell us about your negative experiences with any of the medications you have been prescribed for Narcolepsy.
23. What Narcolepsy medication do you access via the (Pharmaceutical Benefits Scheme) PBS? *
Before marking "other" and adding another medication please check it is not already listed.
Required
24. What medication/s do you or have you been prescribed for Narcolepsy that you had to access via a private script? (including the Special Access Scheme) *
Before marking "other" and adding another medication please check it is not already listed.
Required
25. Why do you (or did you) access the above medication/s via a private script? *
Before marking "other" please check that the reason is not already listed. If you don't know or can't remember check 'other'
Required
26. What other medical conditions do you have? *
Before marking "other" and adding a condition please check that it is not already listed.
Required
27. In addition to the medication you take for Narcolepsy do you regularly take any of the following medication as well (for other sleep disorder/s or other medical conditions)? *
Please note the medications listed under each class are examples only, there may be many others.
Required
28. If you have Sleep Apnea how is it treated?
If you use CPAP and a MAS device (at different times) tick which one you use the most
Clear selection
29. If you have Sleep Apnea and use a CPAP, APAP or BiPAP/BPAP Machine how many hours a night do you usually use it?
Clear selection
30.  If you use a CPAP, APAP or BiPAP/BPAP Machine or Oral Appliance for Sleep Apnea how many nights a week do you use it?
Clear selection
31. Is there a history of diagnosed Narcolepsy or Idiopathic Hypersomnia in your family? *
32. Have you had a HLA gene test for Narcolepsy? *
The specific genetic variant HLA-DQB1*0602 is found in more than 90% of patients with narcolepsy with cataplexy and in 40% of patients with narcolepsy without cataplexy. However, this subtype is also present in 12–38% of the general population.
33. Have you had your cerebrospinal fluid tested for Hypocretin/Orexin Deficiency? *
34. Have you (or did you) decide not to have children or to limit how many you have due to your health? *
35. Do you work? *
Please note "outside the home" is a general term used to describe working at a job other than home duties and that is how it is interpreted here so if you actually work from home for an employer for example, please check the "outside the home" box that is appropriate to you. Also note: "work" means paid work or volunteering
36. Why do you work part time? (less than 38-40 hours per week)
Clear selection
37. Have you told your current employer you have Narcolepsy? *
38. Have you had a negative experience with past employers due to Narcolepsy? *
39. Please feel free to tell us why telling your current or past employer/s that you have Narcolepsy was not a positive experience.
40. Have you asked your school or university etc for accommodations for your Narcolepsy?
Clear selection
41. Please feel free to tell us about your experiences with your school or university etc regarding asking for accommodations for your Narcolepsy.
42. Do you receive a Disability Support Pension from Centrelink?   *
43. Do you receive assistance via the NDIS? *
44. On a scale from 1-10 how well would you say you are managing your Narcolepsy symptoms and therefore life in general? 10 would be if you have implemented lifestyle changes etc, learned to accept your limitations and are managing your symptoms to the best of your ability. 1 would be if you are at rock bottom and are in desperate need of help. *
45. What advice did your doctor give you about managing Narcolepsy? *
Required
46. What advice do you think is important for people to be given when they are diagnosed with Narcolepsy (and perhaps other sleep disorders) that you did NOT receive when you were diagnosed? *
Required
47. What are your biggest concerns/hurdles you face or issues you think need addressing with regards to Narcolepsy?
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