Part 4: Your scapular fixation - UK Patient Registry for FSHD

Part 4 is about your experience of scapular fixation. With the help of your entries, we can better understand the benefits and problems this procedure can have on patients with FSHD.

General

Why was the chosen shoulder operated on first? please select all that apply

It was my dominant side (e.g. the side needed for writing)

It was the most affected side (e.g. the one with the least mobility/most pain)

I don’t know

Are you happy you underwent scapular fixation surgery?

Very happy

Happy

Unhappy

Very unhappy

Who proposed the scapular fixation surgery? please select all that apply

My GP suggested it to me

My Neuromuscular Specialist suggested it to me

I suggested it to my doctor after hearing about it from another patient

I suggested it to my doctor after hearing about it online

What were your expectations before you had the surgery?

Please select all that apply, and please list all additional expectations that you had before the surgery.

Increased mobility in the affected shoulder

Decreased pain in the affected shoulder

Mobility and pain before the operation

The following questions are about your mobility and pain before you had scapular fixation surgery.

How would you describe your ability to raise your arm above shoulder height before the operation?

Unrestricted

Partially restricted

Considerably restricted

How would you describe the level of pain in your shoulder before the operation?

How would you describe your ability to rotate/twist your upper body before the operation?

Unrestricted

Partially restricted

Considerably restricted

Mobility and pain one year after the operation

The following questions are about your mobility and pain one year after you had scapular fixation surgery.

How would you describe your ability to raise your arm above shoulder height one year after the operation?

Unrestricted

Partially restricted

Considerably restricted

How would you describe describe the level of pain in your shoulder one year after the operation?

How would you describe your ability to rotate/twist your upper body one year after the operation?

Unrestricted

Partially restricted

Considerably restricted

Rehabilitation after the surgery

The following questions are about the period of rehabilitation following your surgery.

Did you see a physiotherapist during your rehabilitation after the surgery?

Yes

No (please continue to the next question block “Mobility and pain now”)

For how long after your surgery did you receive physiotherapy?

0-3 months

3-6 months

6-12 months

More than 12 months

How many sessions of physiotherapy did you have?

If you are still having physiotherapy please estimate the number of sessions you will have.

sessions

How frequently did you/do you attend physiotherapy sessions?

sessions per month

Were you satisfied with the level of physiotherapy you received?

Very Satisfied

Satisfied

Dissatisfied

Extremely dissatisfied

Were you given any exercises to complete at home during your rehabilitation?

Yes

No (please continue to the next question block “Mobility and pain now”)

How long after your surgery did you complete the exercises for?

0-3 months

3-6 months

6-12 months

More than 12 months

Were you satisfied with the exercises given to you?

Very Satisfied

Satisfied

Dissatisfied

Extremely dissatisfied

Did you see a reduction in pain as a result of the physiotherapy you completed either in hospital or at home?

A dramatic reduction in pain

Some reduction in pain

No reduction in pain

An increase in pain

Did you notice an increase in strength as a result of the physiotherapy you completed either in hospital or at home?

A dramatic increase in strength

Some increase in strength

No increase in strength

A reduction in strength

Mobility and pain now

How would you describe your ability to raise your arm above shoulder height now?

Unrestricted

Partially restricted

Considerably restricted

How would you describe the level of pain in your shoulder now?

How would you describe your ability to rotate/twist your upper body now?

Unrestricted

Partially restricted

Considerably restricted

Your work

The following questions are about your work, whether it is full time, part time or voluntary.

Before you had the operation, how would you describe your employment status?

In paid full time employment

In paid part time employment

In unpaid (voluntary) full time employment

In unpaid (voluntary) part time employment

Unemployed

Stay at home parent

Fulltime student

How would you describe your work before your operation?

Sedentary

Somewhat sedentary

Somewhat physical

Very physical

How long after the surgery were you able to return to work?

If you have not yet returned to work, when do you expect this to be?

0-3 months

3-6 months

6-12 months

More than 12 months

I did not return to work/I have no plans to return to work

After your operation, how would you describe your employment status?

In paid full time employment

In paid part time employment

In unpaid (voluntary) full time employment

In unpaid (voluntary) part time employment

Unemployed

Stay at home parent

Fulltime student

How would you describe your work after your operation?

Sedentary

Somewhat sedentary

Somewhat physical

Very physical

How long after the operation were you able to resume other normal activities of daily living using the operated arm?

This includes activities such as combing hair, brushing teeth, and shaving.

0-3 months

3-6 months

6-12 months

More than 12 months

Information about the operation

The following questions are about the information you received before your operation.

Were you given any information about the expected outcomes before your surgery?

Yes

No (please skip the next two questions)

If yes, who provided you with information? please select all that apply

Surgeon

Neuromuscular specialist

A patient organisation (please specify below)

Care advisor

Were you satisfied with the level of information you received about the possible outcomes of the surgery before you had the operation?

Were you given any information about the possible complications that may occur during or after your surgery?

Yes

No (please continue to the next question block “Resulting pain”)

If yes, were you informed about any of the following complications? please select all that apply

Increased pain in your shoulder

Increased pain in your back

Increased pain in your arm

Increased pain in your hand

The breaking of materials (e.g. the wires or screws used in the operation)

Nerve damage leading to sensory loss in your hand

Reduced ability to rotate your upper body

If yes, who provided you with this information? please select all that apply

Surgeon

Neuromuscular specialist

A patient organisation (please specify below)

Care advisor

Were you satisfied with the level of information you received about the possible complications before you had the surgery?

Resulting pain

The following questions are about any pain you experience as a result of the surgery.

Do you currently have increased pain following your scapular fixation?

Yes

How would you describe this pain?

Side effects

The following questions are about any side effects you have experienced as result of the surgery.

Have you noticed a change in rotational mobility in your upper body?

Yes

Have you experienced any sensory loss in your hand since the operation?

Yes

Your experience

The following questions are about your experience with scapular fixation surgery.

Would you recommend the surgery to other people with FSHD who are considering it?

Yes

Are there any other comments you would like to make about your experience of scapular fixation?

Contact details

We would like to know more about your surgery, to do this we will try and contact your GP and the surgeon who carried out the operation. We need some more details to help us do this.

Please answer in as much detail as possible but do not worry if you cannot remember all of the information.