Table 1

Neuromyelitis optica patient-reported outcome measure—preliminary instrument

In the past 4 weeks:	No difficulty	A little difficulty	Moderate to severe difficulty	Completely blind
1. Vision
1.1 How much difficulty have you had with your vision (while wearing your glasses or contact lenses, if you wear them)	1	2	3	4
1.2 Because of your eyesight, how much difficulty do you have reading ordinary print in newspapers?	1	2	3	4
1.3 Because of your eyesight, how much difficulty do you have noticing objects off to the side while you are walking along?	1	2	3	4
1.4 Because of your eyesight how much difficulty do you have doing things like shaving, styling your hair or putting on make-up?	1	2	3	4

In the past 4 weeks:	Not at all	A little	Moderately	A lot
2. Role/life functioning
2.1 Has NMO affected your ability to meet your expected goals at this point in your life	1	2	3	4
2.2 How much difficulty have you had accomplishing the things that are important to you?	1	2	3	4
2.3 Has NMO made you dependent on other people?	1	2	3	4
2.4 How often have you not been able to bath and dress yourself?	1	2	3	4
2.5 Have you had difficulty participating in family and social activities in a satisfying way?	1	2	3	4
2.6 Have you stayed at home most of the time because of symptoms of NMO?	1	2	3	4
2.7 Have you had difficulty completing household tasks?	1	2	3	4

In the past 4 weeks, how much has your NMO:	Not at all	A little	Moderately	A lot
3. Mobility
3.1 Limited your mobility	1	2	3	4
3.2 Limited your ability to walk?	1	2	3	4
3.3 Limited your ability to climb up and down stairs	1	2	3	4
3.4 Limited your balance when standing or walking	1	2	3	4
3.5 Made it necessary for you to use support when walking (eg, holding on to furniture, using a stick, etc)	1	2	3	4
3.6 Limited how long you can work or do other activities	1	2	3	4

In the past 4 weeks, how bothered have you been by:	Not at all	A little	Moderately	A lot
4. Bladder
4.1 Overall, how much do urinary symptoms interfere with your day-to-day life?	1	2	3	4
4.2 Frequent urination during the daytime hours?	1	2	3	4
4.3 An uncomfortable urge to urinate?	1	2	3	4
4.4 A sudden urge to urinate with little or no warning?	1	2	3	4
4.5 Involuntary urination or loss of urine?	1	2	3	4
4.6 Difficulty initiating urination when you want?	1	2	3	4

In the past 4 weeks:	Not at all	A little	Moderately	A lot
5. Bowel
5.1 How much has NMO affected your bowel management?	1	2	3	4
5.2 Have you experienced constipation?	1	2	3	4

Over the past 4 weeks, how often have you been bothered by any of the following problems:	Not at all	A little	Moderately	A lot
6. Mood
6.1 Altered mood related to your NMO?	1	2	3	4
6.2 Little interest or pleasure in doing things?	1	2	3	4
6.3 Feeling down, depressed or hopeless?	1	2	3	4
6.4 Feeling nervous, anxious or on edge?	1	2	3	4
6.5 Not being able to stop or control worrying about symptoms related to NMO?	1	2	3	4
6.6 Becoming easily annoyed (snappy/irritated)?	1	2	3	4
6.7 Feeling frustrated a lot of the time because of the symptoms of NMO?	1	2	3	4

Sexual arousal is a feeling that includes physical and mental aspects of sexual excitement.
In the past 4 weeks:	Not at all	A little	Moderately	A lot
7. Sexual dysfunction
7.1 How much has NMO affected your sexual activity?	1	2	3	4
7.2 How much has NMO affected your level of sexual desire or interest?	1	2	3	4
7.3 How much has NMO affected your level of sexual arousal during sexual activity or intercourse?	1	2	3	4
7.4 How much has NMO affected feelings of intimacy or closeness?	1	2	3	4

In the past 4 weeks:	Not at all	A little	Moderately	A lot
8. Pain
8.1 How much physical pain have you had as a result of your NMO symptoms?	1	2	3	4

In the past 4 weeks:	Not at all	A little	Moderately	A lot
9. Fatigue
9.1 How much has fatigue affected you?	1	2	3	4
9.2 Have you needed to rest more often or for long periods after physical or mental activity?	1	2	3	4
9.3 If you have overdone things then will you feel fatigued the next day?	1	2	3	4
9.4 Have you become weak after physical activity?	1	2	3	4
9.5 Has mental fatigue had been a problem for you?	1	2	3	4
9.6 Have you had difficulty sleeping?	1	2	3	4

In the past 4 weeks:	Not at all	A little	Moderately	A lot
10. Cognition
10.1 Have you experienced difficulty with your ability to think, reason and remember?	1	2	3	4
10.2 Have you had difficulty organising your thoughts when doing things at home or at work	1	2	3	4
10.3 Have you found it hard to concentrate on relatively straight forward things	1	2	3	4

NMO, neuromyelitis optica.