This questionnaire has been prepared to help support patients diagnosed with GBS (Guillain-Barre Syndome) or CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). What has been found to provide great support is to have a past patient visit a current patient who is going through the trauma of the disorder , particularly if the visitor has had a similar trauma and recovered.
Please complete this form and send to The IN Group , 138 B Princess Street KEW VIC 3101 if you are a present or past patient and wish to receive or provide support.
Present or Past PATIENT'S NAME ___________________________________________________
ADDRESS: ________________________________________________________
POSTCODE: _________ TELEPHONE: _______________________________
1. Are you a present ( ) or past ( ) patient? Male( ) Female( ). Age ......yrs
2. Were you diagnosed with GBS ( ) or CIDP ( ) or other .............. (Specify)
3. In what year were you diagnosed? _________
4. How old were you when you were diagnosed: __________
5. Are you living presently in ( ) Hospital; ( ) Re-hab Unit; ( ) Alone;
( ) Independent hostel living; ( ) With family; ( ) Other.
6. Was the initial diagnosis correct? Y/N __________
If not, how long after admission was a correct diagnosis made: --------------------
7. Which hospital(s) were you in: __________________________________
8. How long were you in hospital: __________________________________
9. Were you in intensive care unit: Y/N _______________
10. Were you on a ventilator: Y/N __________
11. If so, how long: _________________
12. Were you attended by a neurologist(s): Y/N ________________
13. Did you have ( ) Plasmapheresis , ( ) Immunoglobulin , ( ) Imuran, ( ) Cyclosporin,
( ) Predisolone, ( ) Other Treatments , state which: _____________________
14. How many treatments: ______
15. How soon after diagnosis: __________________
16. Did you have any further treatment while in a re-hab unit: Y/N ______
17. How long: ___________________
18. Prior to having the disorder were there any factors YOU believe contributed to contracting it - eg virus, pregnancy, stress, any medication or vaccination, or any other theory you consider may have affected you:
____________________________________________________________________
____________________________________________________________________
19. Have you had one or more recurrences ? Y/N ____________How many ..........
20. On returning home did you have any ancillary services to assist you:? Y/N ________
Which service: ___________________________________
21. Were you informed of GBS/CIDP support association whilst in hospitalit: Y/N-----------
22. Did you request visits by support group member whilst in hospital? Y/N _______
After discharge: Y/N _______
23. Did you consider sufficient information was made available to you whilst you were
in hospital to acquaint you with your disorder? Y/N _______
24. Do/did you continue a supervised exercise program after leaving hospitalit: Y/N ______
For how long: ________Do you continue unsupervised exercise program now:Y/N ________
25. Do/did you have the benefit of hydrotherapy whilst in hospital/re-hab unit:?Y/N _______
26. Have you remaining weakness: Y/N _________ If so, indicate which:
( ) Considerable ( ) Moderate ( ) Slight ( ) None __________
( ) Feet and/or legs; ( ) Hands and/or arms ( ) Face ( ) Other areas________
27. If recovered/recovering do you still experience:
( ) Pain ( ) Numbness/tingling ( ) Tiredness.?
28. Would or could you describe your worst extent of paralysis or other trauma relevant to you in your early diagnosis:
____________________________________________________________________
____________________________________________________________________
____________________________________________________________________
29. Would you care to summarise any further information regarding your present position or any point not covered in this Questionnaire:
____________________________________________________________________
____________________________________________________________________
____________________________________________________________________
30. Do you give consent for your name to be published in The IN Group Newsletter?:
Y/N ______
Signed: ___________________________
31. Do you agree to have your name listed on a contact register for future contact by other GBS persons in your area:
Y/N _______Signed: _______________________
Date ..................