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Patients Myositis Journey & Burden of Disease Survey

This survey seeks to understand your myositis journey and the burden of the disease - financially, physically, and mentally.

Your valuable input will greatly help the overall understanding and learning on myositis care. Please complete the survey below, it will take roughly 8 minutes of your time. Your honest responses will be highly appreciated!

Thank you!

How old are you?

18 or less

19-29

30-39

40-49

50-59

60-69

70-79

80-89

90-99

100+

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What is your biological sex?

Female

Intersex

Male

Prefer not to answer

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How do you describe yourself?

Asian or Pacific Islander

Black or African American

Native/indigenous

White or Caucasian

Biracial

Multiracial

Other

Prefer not to answer

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What is your ethnicity?

Hispanic/Latino

Not Hispanic/Latino

Prefer not to answer

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What is your current employment status?

Working Full Time (>40 hours/week)

Working Part Time (up to 39 hours per week)

On leave but still employed

Unemployed and currently looking for work

Unemployed and not currently looking for work

Unemployed due to health-related reasons and looking for work

Unemployed due to health-related reasons and not looking for work

Student

Homemaker

Retired

Self-employed

Receiving disability payments

Other

Prefer not to answer

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What is your marital status?

Single

Married or in a domestic partnership

Widowed, divorced, or separated

Prefer not to answer

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What is your highest level of education?

Less than a high school diploma

High school degree or equivalent

Some college, no degree

Associate degree

Bachelor's degree

Master's degree

Professional degree

Doctorate

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What type of myositis do you have?

Dermatomyositis

Polymyositis

Anti-synthetase syndrome

Immune mediated necrotizing myopathy

Inclusion body myositis

Mixed connective tissue disorder/ overlap myositis

Other

Not yet diagnosed

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How were you diagnosed with myositis (check all that apply)?

Antibody

Muscle biopsy

Skin biopsy

MRI of muscle

Response to treatment

Other

None of the above

When did your symptoms start? Please enter your best estimate of the month, day, and year in the following format: MM-DD-YYYY.

M-D-Y

When were you diagnosed? Please enter your best estimate of the month, day, and year in the following format: MM-DD-YYYY.

M-D-Y

Who primarily manages your myositis?

Neurologist

Neuromuscular specialist

Immunologist

Rheumatologist

Primary care provider

Other

None

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Which specialists do you follow up with for your myositis? (Select all that apply)

Neurologist

Neuromuscular specialist

Rheumatologist

Dermatologist

Pulmonologist

Orthopedic Surgeon

Other

None

Approximately how many healthcare providers did you see before obtaining a diagnosis of myositis?

1-2

3-4

5-7

8-10

11 or higher

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When you were finally diagnosed with myositis, how far did you have to travel to see the doctor/specialist/center of excellence who diagnosed you?

1-20 miles

21-50 miles

51-100 miles

101-500 miles

501+ miles

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What form of insurance did you have when you were seeking a diagnosis?

Private high deductible (deductible greater than $1400 for individuals or $2800 for families)

Private low deductible (deductible less than $1400 for individuals or $2800 for families)

Medicare

Medicaid

Tricare/Military

Non-USA based national/universal healthcare (eg, National Health Service or Canadian Medicare)

Uninsured

Other

Don't know

If other, please specify type of insurance.

What form of insurance do you currently have?

Private high deductible (deductible greater than $1400 for individuals or $2800 for families)

Private low deductible (deductible less than $1400 for individuals or $2800 for families)

Medicare

Medicaid

Tricare/Military

Non-USA based national/universal healthcare (eg, National Health Service or Canadian Medicare)

Uninsured

Other

Don't know

If other, please specify type of insurance.

What is your household yearly income?

Less than $20,000

$20,000 to $34,999

$35,000 to $49,999

$50,000 to $74,999

$75,000 to $99,999

$100,000 to $149,999

Over $150,000

Prefer not to answer

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How much do you worry about financial problems that have resulted from your myositis diagnosis and treatment?

Not at all

A little bit

Somewhat

Quite a bit

Very much

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How has myositis affected your finances? Please check all that apply

I had to use savings

I had to borrow money or take out a loan

I could not make payments on credit cards or other bills

I cut down on spending for food and/or clothes

I cut down on spending for health care for other family members

I cut down on recreational activities

I cut down on expenses in general

Remaining status quo, no pressure yet

Not at all

A little bit

Somewhat

Quite a bit

Very much

Lately because of my illness, some people avoided me

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Lately because of my illness, I felt left out of things

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Lately because of my illness, people avoided looking at me

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Lately because of my illness, I felt embarrassed about my illness

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Lately because of my illness, some people seemed uncomfortable with me

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Lately because of my illness, some people acted as though it was my fault I have this illness

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Never

Rarely

Sometimes

Often

Always

I have a sense of well-being

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I feel hopeful

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My life is satisfying

My life has purpose

My life has meaning

I feel cheerful

I have a sense of balance in my life

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Many areas of my life are interesting to me

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I am not at all confident

I am a little confident

I am somewhat confident

I am quite confident

I am very confident

I can handle negative feelings

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I can find ways to manage stress

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I can avoid feeling discouraged

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I can bounce back from disappointment

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I can manage my symptoms during my daily activities

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I can keep my symptoms from interfering with relationships with friends and family

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I can manage my symptoms in a public place

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I can work with my doctor to manage my symptoms

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Where is your joint pain located (select all that apply)?

Shoulder

Elbow

Wrist

Hand

Hip

Knee

Ankle

Foot

Neck

Lower back

Other

None of the above

Which side is involved?

Left

Right

Both

Neither

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How long have you had symptoms of your joint pain?

1-4 weeks

1-5 months

6-12 months

1-2 years

3-4 years

>5 years

Not applicable

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On a scale of 1-10 with 1 being minimal and 10 being severe, what is your joint pain level?

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Has your joint pain recently worsened?

Yes

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Is your overall function declining due to joint pain?

Yes

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Can you tolerate physical therapy exercises?

Never

Rarely

Often

Always

I currently don't have PT

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Do you use pain medication?

Yes

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What pain medications do you use (check all that apply)?

Tylenol/Paracetamol

NSAID (ibuprofen, naproxen, naprosyn, aleve, meloxicam, toradol, ketorolac, etc)

Muscle spasm relaxer (baclofen, etc)

Nerve pain medication (gabapentin, pregabalin)

Opioids (tramadol, oxycodone, dilaudid, MS Contin, etc)

Marijuna-related products (medical marijuana, CBD creams/oil, etc)

Herbal or naturopathic treatment

Other

Have you seen an orthopedic surgeon for any of your care related to myositis?

Yes

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How many falls or orthopedic injuries have you had over the past year?

5 or more

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How many falls have you had since your diagnosis of myositis?

5 or more

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Do you use mobility aids (such as walking sticks, canes, crutches, walker, wheelchair)?

Yes

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What mobility aids do you use (check all that apply)?

Cane/crutch

Walker

Rollator

Wheelchair

Power chair

Scooter

Other

Do you use any braces or splints?

Yes

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Which braces or splints do you use (check all that apply)?

Custom upper extremity orthotic

Custom lower extremity orthotic

Pre-fabricated/off-the-shelf upper extremity splint or brace

Pre-fabricated/off-the-shelf lower extremity splint or brace

If you were on steroids for greater than 1 month, were you started on medications like vitamin D, calcium, and/or other osteoporosis medications to prevent fractures?

Yes

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Which medications were you started on (check all that apply)?

Vitamin D

Calcium

Bisphosphonates (Boniva, Reclast, Actonel, Fosamax, Zometa, etc)

Denosumab (Prolia/Xgeva)

Teriparatide (Forteo, Bonsity)

Other osteoporosis medications

Have you had a fracture since you have been diagnosed with myositis?

Yes

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How many fractures have you had since being diagnosed with myositis?

1 fracture

2 fractures

>2 fractures

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What fracture(s) did you get (check all that apply)?

Hand fracture

Wrist fracture

Elbow fracture

Pelvic fracture

Hip fracture

Ankle fracture

Other upper extremity fracture

Other lower extremity fracture

Spine fracture

Did you require any orthopedic surgeries for any of your fractures?

Yes

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How many surgeries have you had for your fractures?

1 surgery

2 surgeries

>2 surgeries

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Have you noticed any difficulty with using your arms or hands for activities of daily living?

Yes

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Have you seen a hand surgeon to improve the functional ability of your extremities and make tasks of daily living easier?

Yes

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How would you rate your upper extremity function compared to a completely normal upper extremity?

0-10%

11-20%

21-30%

31-40%

41-50%

51-60%

61-70%

71-80%

81-90%

91-100%

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If you have Inclusion Body Myositis (IBM), would you consider hand surgery to temporarily improve hand function? Tendon transfer surgery in IBM uses redundant strong muscles to assist with weak muscles to improve grip and pinch strength (hold objects like a fork, button clothes, etc). The risks specific to IBM include the possibility of stiffness and that the surgery's potential benefits will decrease over time due to progressive weakness from IBM.

Yes

I do not have IBM (Inclusion Body Myositis)

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How long should the improvement in hand function last in order for you to consider having this surgery?

< 3 months

3 months to < 6 months

6 months to <12 months

1- 2 years

> 3 years

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Does your health now limit you in doing vigorous activities, such as running, lifting heavy objects,
participating in strenuous sports?

Not at all

Very little

Somewhat

Quite a lot

Cannot do

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Does your health now limit you in walking more than a mile?

Not at all

Very little

Somewhat

Quite a lot

Cannot do

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Does your health now limit you in climbing one flight of stairs?

Not at all

Very little

Somewhat

Quite a lot

Cannot do

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Does your health now limit you in lifting or carrying groceries?

Not at all

Very little

Somewhat

Quite a lot

Cannot do

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Does your health now limit you in bending, kneeling, or stooping?

Not at all

Very little

Somewhat

Quite a lot

Cannot do

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Are you able to do chores such as vacuuming or yard work?

Without any difficulty

With a little difficulty

With some difficulty

With much difficulty

Unable to do

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Are you able to dress yourself, including tying shoelaces and doing buttons?

Without any difficulty

With a little difficulty

With some difficulty

With much difficulty

Unable to do

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Are you able to shampoo your hair?

Without any difficulty

With a little difficulty

With some difficulty

With much difficulty

Unable to do

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Are you able to wash and dry your body?

Without any difficulty

With a little difficulty

With some difficulty

With much difficulty

Unable to do

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Are you able to get on and off the toilet?

Without any difficulty

With a little difficulty

With some difficulty

With much difficulty

Unable to do

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To save your responses and end the survey, click the 'End Survey' button below. If you have selected the wrong option by accident and/or wish to return to the survey, click the 'Return and Edit Response' button.