NAION questionnaire

Thank you for taking part in this questionnaire.

History of questionnaire

A questionnaire was first suggested on the BT Yahoo NAION message board in 2004. As a person with NAION, one of us (CR), recognised many similar problems reading the experiences posted on the BT Yahoo NAION message board. We realised the possibilities of asking more details from this unique group of fellow sufferers.

Purpose of questionnaire

There is little published information on the personal experiences of people with NAION. The aims of this questionnaire are to:

1)  Provide a detailed analysis of personal, patient experiences of NAION.

2)  Examine the relationships between NAION and risk factors

3)  Detail the personal experiences of symptoms of NAION

4)  Understand more about the effects of NAION on emotions and relationships

5)  Document the effect of treatments

6)  Publish the results in reputable scientific journal (the three authors have nothing to gain financially from this process)

Thank you for your help and patience

Claud Regnard, Physician in Palliative Care Medicine
Margaret Dayan, Consultant in Opthamology
Wendy Adams, Registrar in Opthamology

Newcastle upon Tyne, UK

Before starting- please note

The hope is to publish this information in a scientific journal.
If you return a completed questionnaire, it will be assumed you agree to this information being used in a scientific journal.
If you do not agree to this, please do not return the questionnaire.


When you have finished

You can either

-  e-mail this Word document by
- saving the completed questionnaire on your computer
- pressing ‘reply’ on your e-mail
- attaching your saved questionnaire to the reply.

-  or post it to
Claud Regnard
St. Oswald's Hospice,
Regent Avenue, Gosforth,
Newcastle upon Tyne,
NE3 1EE
UK


INSTRUCTIONS

Blue line boxes: click on box to choose from a menu
Thick line boxes: click on box to write in details (box will expand as you type)
Small boxes: leave blank or click on box to enter an ‘x’
NB. You can move from box to box by pressing the ‘Tab’ key

Are you male or female :

Your age at the time of your first NAION event:

BEFORE your first NAION event

Were you on any of the following drugs?
Aspirin Warfarin Copidogrel (Plavix) Diuretic

Decongestants eg. Benadryl, Sudafed Erectile dysfunction drug eg. sudenafil (Viagra)

Drugs to reduce blood pressure Which one?

Antidepressants Which one?

Drugs to reduce cholesterol Which one?

Other:

Did you have any of the following?

Raised cholesterol High blood pressure

Rheumatoid arthritis Ankylosing spondylitiis Diabetes

Raynaud’s Crohn’s disease

Sleep apnoea

Have you had a cataract removed in the last year? If you have, which eye?

If you had another eye condition state which:

Any other illnesses or conditions:

Your first NAION event


Month and year of your first NAION

Was it one eye or both that were affected?

When did you first notice the NAION?
On waking one morning During the day In the evening

Gradually over days Gradually over weeks

What did you notice?
Smudge Blurred area Grey area

Other:

Your eye specialist
Did an eye specialist tell you it was NAION? If not, who did?

Did the specialist:

Break the news in stages? Explain the condition clearly?

Explain the stages of NAION? Explain the risks of further episodes?

Ask how you felt? Ask if you had any questions?

Offer any emotional support? Offer further appointments?

Explain you had a small disc? Explain that a small disc is a risk for NAION?

Any further comments you wish to make about your care from the eye specialist?

INSTRUCTIONS

Blue line boxes: click on box to choose from a menu
Thick line boxes: click on box to write in details (box will expand as you type)
Small boxes: leave blank or click on box to enter an ‘x’
NB. You can move from box to box by pressing the ‘Tab’ key

What tests did you have?

Cholesterol ESR Other blood test:

Field of vision test CT scan MRI scan

Other test

Do you feel any events were related to your NAION?

What happened in the weeks after your first NAION ?
Did your vision
Improve? Stay the same? Get worse?

In the area of reduced vision, did you notice any of the following:

Tiny, brief flashes at night Is this still present? If NO, how many weeks did this last?

Brief flash after unexpected noise Is this still present? If NO, how many months did this last?

Patterns just after switching off lights Is this still present? If NO, how many months did this last?

Other:

In the area of normal vision, did you notice any of the following:

After images on closing or rubbing eyes Is this still present? If NO, how many months did this last?

A change in the colours you can see Is this still present? If NO, how many months did this last?

Are you troubled by pain in bright lights?

Other:

INSTRUCTIONS

Blue line boxes: click on box to choose from a menu
Thick line boxes: click on box to write in details (box will expand as you type)
Small boxes: leave blank or click on box to enter an ‘x’
NB. You can move from box to box by pressing the ‘Tab’ key

Further episodes of NAION

Was this in the same eye? When did this happen?

Was this in the other eye? When did this happen?

Did you have any other episodes? When did these happen

Any comments:

Your eyesight NOW

In each box, type what percentage of vision you have now (0 - 100)

Eg. 100 = normal vision, 50 = partial vision, 0 = no vision

Upper outer Upper inner Upper inner Upper outer

Central upper Central upper


Central lower Central lower

Lower outer Lower inner Lower inner Lower outer

LEFT eye RIGHT eye

INSTRUCTIONS

Blue line boxes: click on box to choose from a menu
Thick line boxes: click on box to write in details (box will expand as you type)
Small boxes: leave blank or click on box to enter an ‘x’
NB. You can move from box to box by pressing the ‘Tab’ key

Your emotions

Did you realise immediately that the visual loss was permanent?

If NO, how long did it take to realise this?

Which of the following emotions did you find troublesome:

Did you feel anxious? If YES, did you feel anxious
more than half the time and for
more than two weeks?

Has the anxiety become manageable? If yes, how long did this take?

Did you feel depressed? If YES, did you feel depressed
more than half the time,
and for more than two weeks?

Has the depression become manageable? If yes, how long did this take?

Did you feel angry? If YES, was your anger difficult to control?

Has the anger become manageable? If yes, how long did this take?

Any comments about your feelings?

What treatments did you use to improve your feelings?

Relaxation Antidepressant Counsellor

Meditation Night-time sedative Cognitive behavioural therapy

Reflexology Daytime sedative Psychotherapy

Aromatherapy St, John’s Wort Walking

Yoga Massage Exercise

Homeopathy Other

Which of these helped?

INSTRUCTIONS

Blue line boxes: click on box to choose from a menu
Thick line boxes: click on box to write in details (box will expand as you type)
Small boxes: leave blank or click on box to enter an ‘x’
NB. You can move from box to box by pressing the ‘Tab’ key

Information

Did you receive any of the following:

Spoken information about NAION If NO, would this have been helpful?

Written information about NAION If NO, would this have been helpful?

Spoken information about treatment If NO, would this have been helpful?

Written information about treatment If NO, would this have been helpful?

Did you find the internet helpful?

If YES, which sites did you find most helpful:

Treatment for your NAION

Which of these did you try:

Aspirin Are you still taking this?

Steroids eg. prednisolone Are you still taking this?

Levadopa (Sinemet) Are you still taking this?

Clopidogrel Are you still taking this?

Memantine Are you still taking this?

Alpahgam (brimonidine) eye drops Are you still taking this?

CPAP Are you still taking this?

Acupuncture Are you still using this?

Antioxidants (vit C, folate) Are you still taking this?

Statin eg. simvastatin for cholesterol Are you still taking this?

Fish oil Are you still taking this?

Folic acid Are you still taking this?

Other:

Which treatments did NOT help:

INSTRUCTIONS

Blue line boxes: click on box to choose from a menu
Thick line boxes: click on box to write in details (box will expand as you type)
Small boxes: leave blank or click on box to enter an ‘x’
NB. You can move from box to box by pressing the ‘Tab’ key

Your general health before NAION and now

What is your height now?

Before NAION / NOW
Weight. Click here for unitsPoundsKg
Waist measurement Click here for unitsInchesCms
Cholesterol
Number of portions of fruit and vegetables each day
Number of meals containing fried food each week
Number of minutes of gentle exercise each day eg. walking
Number of minutes of strenuous exercise each week, eg running
Snoring / Click hereYESNO / Click hereYESNO

What affects your vision?

Click hereBetterWorseUnchanged Bright sunlight outside / Click hereBetterWorseUnchanged Sunglasses in day
Click hereBetterWorseUnchanged Cloudy day outside / Click hereBetterWorseUnchanged Reading glasses
Click hereBetterWorseUnchanged Night time / Click hereBetterWorseUnchanged Driving glasses
Click hereBetterWorseUnchanged Good reading light / Click hereBetterWorseUnchanged Glare reducing glasses at night
Click hereBetterWorseUnchanged Overhead fluorescent lighting / Click hereBetterWorseUnchanged Being busy
Click hereBetterWorseUnchanged Indoor home lighting / Click hereBetterWorseUnchanged Boredom
Click hereBetterWorseUnchanged Large print / Click hereBetterWorseUnchanged Low mood
Click hereBetterWorseUnchanged Larger computer monitor
Click hereBetterWorseUnchanged Large font software

What can you NOT do because of your NAION

INSTRUCTIONS

Blue line boxes: click on box to choose from a menu
Thick line boxes: click on box to write in details (box will expand as you type)
Small boxes: leave blank or click on box to enter an ‘x’
NB. You can move from box to box by pressing the ‘Tab’ key


Is there anything else you want to mention ?