Part 3b: Your quality of life - UK Patient Registry for FSHD

Part 3b contains several questions regarding your quality of life. These questions are about how your muscle condition affects your quality of life and your entries will help us understand the influence of FSHD on the everyday life of patients.

Your muscle weakness

Do you have any muscle weakness due to your muscle condition?

By weakness we mean any weakness in your legs, arms and hands or in any other muscles. For example, your face, eyes, swallowing, breathing or bladder and bowel control may be affected.

If you don't have any muscle weakness, please select “No” and continue with the next question group “The ‘locking’ of your muscles”.

Yes

No (please continue with the next question group “The ‘locking’ of your muscles”)

How much weakness would you say you have in the muscles affected by your condition?

Very little

Some

A fair amount

A moderate amount

A considerable amount

A lot

An extreme amount

Does your muscle weakness cause difficulties in your life at the moment?

None at all

Some

A fair amount

A moderate amount

A considerable amount

Very many

An extreme amount

How important to you are any difficulties caused by your muscle weakness?

Not at all important

Slightly important

Reasonably important

Moderately important

Considerably important

Very important

Extremely important

The ‘locking’ of your muscles

Do you have any ‘locking’ (seizing up) of your muscles as a result of your muscle condition?

If you don't have any ‘locking’ of your muscles, please select “No” and continue with the next question group “Your pain”.

Yes

No (please continue with the next question group “Your pain”)

How much muscle ‘locking’ would you say you have at the moment?

Very little

Some

A fair amount

A moderate amount

A considerable amount

A lot

An extreme amount

Does the ‘locking’ of your muscles cause difficulties in your life at the moment?

None at all

Some

A fair amount

A moderate amount

A considerable amount

Very many

An extreme amount

How important to you are any difficulties caused by the ‘locking’ of your muscles?

Not at all important

Slightly important

Reasonably important

Moderately important

Considerably important

Very important

Extremely important

Your pain

Do you have any pain as a result of your muscle condition?

If you don't have any pain, please select “No” and continue with the next question group “How tired you feel”.

Yes

No (please continue with the next question group “How tired you feel”)

How much pain would you say you have at the moment?

Very little

Some

A fair amount

A moderate amount

A considerable amount

A lot

An extreme amount

Does your pain cause difficulties in your life at the moment?

None at all

Some

A fair amount

A moderate amount

A considerable amount

Very many

An extreme amount

How important to you are any difficulties caused by your pain?

Not at all important

Slightly important

Reasonably important

Moderately important

Considerably important

Very important

Extremely important

How tired you feel

Do you feel tired/fatigued as a result of your muscle condition?

If you don't feel tired/fatigued, please select “No” and continue with the next question group “The things you do”.

Yes

No (please continue with the next question group “The things you do”)

How much tiredness/fatigue would you say you have at the moment?

Very little

Some

A fair amount

A moderate amount

A considerable amount

A lot

An extreme amount

Does your tiredness/fatigue cause difficulties in your life at the moment?

None at all

Some

A fair amount

A moderate amount

A considerable amount

Very many

An extreme amount

How important to you are any difficulties caused by your tiredness/fatigue?

Not at all important

Slightly important

Reasonably important

Moderately important

Considerably important

Very important

Extremely important

The things you do

At the moment, does your muscle condition affect your ability to do the following activities?

Daily activities (for example, washing, dressing and housework)

Not at all

Slightly

A fair amount

Moderately

Considerably

Very much

Extremely

I have no paid employment (for example, I am unemployed or retired or do house-work)

I am not working due to my condition

In the face of my condition, my ability to do all the things I want to do is:

Exactly as I would like it to be

Good, but not quite how I would like it to be

OK, but not how I would like it to be

Neither good nor bad

Quite bad, but it could be much worse

Bad, but it could be worse

The worst it could possibly be

How important to you is the effect of your muscle condition on your ability to do all the things you want to do?

Not at all important

Slightly important

Reasonably important

Moderately important

Considerably important

Very important

Extremely important

My ability is ‘exactly as I would like’

Your independence

At the moment, how much help do you need from other people in carrying out your activities?

(for example, daily activities and going out)

None at all

Some

A fair amount

A moderate amount

A considerable amount

Very many

An extreme amount

In the face of my condition, my level of independence is:

Exactly as I would like it to be

Good, but not quite how I would like it to be

OK, but not how I would like it to be

Neither good nor bad

Quite bad, but it could be much worse

Bad, but it could be worse

The worst it could possibly be

How important to you is the effect of your muscle condition on your level of independence?

Not at all important

Slightly important

Reasonably important

Moderately important

Considerably important

Very important

Extremely important

My independence is ‘exactly as I would like’

Your relationships

At the moment, does your muscle condition cause any difficulties in your relationships with the following people?

Partner/spouse

None at all

Some

A fair amount

A moderate amount

A considerable amount

Very many

An extreme amount

I am not married or in a relationship at the moment or I am widowed

Other family members

None at all

Some

A fair amount

A moderate amount

A considerable amount

Very many

An extreme amount

Other people

(for example strangers, acquaintances and colleagues)

None at all

Some

A fair amount

A moderate amount

A considerable amount

Very many

An extreme amount

In the face of my condition, my close family relationships are:

Exactly as I would like it to be

Good, but not quite how I would like it to be

OK, but not how I would like it to be

Neither good nor bad

Quite bad, but it could be much worse

Bad, but it could be worse

The worst it could possibly be

How important to you is the effect of your muscle condition on your close family relationships?

Not at all important

Slightly important

Reasonably important

Moderately important

Considerably important

Very important

Extremely important

My close family relationships are ‘exactly as I would like’

In the face of my condition, my close friendships are:

Exactly as I would like it to be

Good, but not quite how I would like it to be

OK, but not how I would like it to be

Neither good nor bad

Quite bad, but it could be much worse

Bad, but it could be worse

The worst it could possibly be

How important to you is the effect of your muscle condition on your close friendships?

Not at all important

Slightly important

Reasonably important

Moderately important

Considerably important

Very important

Extremely important

My close friendships are ‘exactly as I would like’

In the face of my condition, my relationships with other people (for example, acquaintances, strangers and colleagues) are:

Exactly as I would like it to be

Good, but not quite how I would like it to be

OK, but not how I would like it to be

Neither good nor bad

Quite bad, but it could be much worse

Bad, but it could be worse

The worst it could possibly be

How important to you is the effect of your muscle condition on your relationships with these other people?

Not at all important

Slightly important

Reasonably important

Moderately important

Considerably important

Very important

Extremely important

My relationships with others are ‘exactly as I would like’

How you feel

In the face of my condition, the way I feel emotionally is:

Exactly as I would like it to be

Good, but not quite how I would like it to be

OK, but not how I would like it to be

Neither good nor bad

Quite bad, but it could be much worse

Bad, but it could be worse

The worst it could possibly be

How important to you is the effect of your muscle condition upon the way you feel emotionally?

Not at all important

Slightly important

Reasonably important

Moderately important

Considerably important

Very important

Extremely important

The way I feel emotionally is ‘exactly as I would like’

The way you look

At the moment, does your muscle condition affect the way you look?

Your muscle condition might affect the way your body, face or skin looks or perhaps the way you move or whether you need to use a stick or wheelchair.

Not at all

Slightly

A fair amount

Moderately

Considerably

Very much

Extremely

In the face of my condition, the way I look is:

Exactly as I would like it to be

Good, but not quite how I would like it to be

OK, but not how I would like it to be

Neither good nor bad

Quite bad, but it could be much worse

Bad, but it could be worse

The worst it could possibly be

How important to you is the effect of your muscle condition upon the way you look?

Not at all important

Slightly important

Reasonably important

Moderately important

Considerably important

Very important

Extremely important

The way I look is ‘exactly as I would like’

Treatment

Do you receive, or are you about to start receiving treatment for your muscle condition?

(For example, tablets, injections or physiotherapy)

If you don't feel tired/fatigued, please select “No” and continue with the next question group “Comments”.

Yes

No (please continue with the section “Comments”)

Do you feel the treatment you receive for your muscle condition has had beneficial effects?

None at all

Some

A fair amount

A moderate amount

A considerable amount

Very many

An extreme amount

Do you feel the treatment you receive for your muscle condition will have beneficial effects in the future?

None at all

Some

A fair amount

A moderate amount

A considerable amount

Very many

An extreme amount

How important to you are the beneficial effects of treatment?

Not at all important

Slightly important

Reasonably important

Moderately important

Considerably important

Very important

Extremely important

Do you think the treatment you receive for your muscle condition has had harmful side effects?

None at all

Some

A fair amount

A moderate amount

A considerable amount

Very many

An extreme amount

I'm unsure

Do you feel the treatment you receive for your muscle condition will have side effects in the future?

None at all

Some

A fair amount

A moderate amount

A considerable amount

Very many

An extreme amount

I'm unsure

How important to you are the side effects of treatment?

Not at all important

Slightly important

Reasonably important

Moderately important

Considerably important

Very important

Extremely important

Comments

If you have any comments you would like to make about your condition and the way it affects you, please use the space below.