(1)Survey of Patient Expectations of Lymphedema Surgery Directions:

(1)

Survey of Patient Expectations of Lymphedema Surgery

Directions: The following survey is intended to assess patients’ understanding and expectations of lymphedema surgery. Please read carefully each question and answer the following the questions.

Part 1)

1) What is your gender?

[ ] Female [ ] Male

2) What is your age? _______

3) What is your ethnicity?

[ ] Hispanic/Latino [ ] White/Caucasian [ ] Black/African American [ ] American Indian/Alaska Native [ ] Asian/Pacific Islander

[ ] Other

4) What is your highest level of education?

[ ] Less than high school diploma [ ] High school diploma/GED [ ] Some college

[ ] Associate degree [ ] Bachelor degree [ ] Graduate degree

5) How long have you been suffering from lymphedema?

[ ] Less than 6 months

[ ] Between 6 months and 1 year [ ] Between 1 and 2 years [ ] Between 2 and 5 years [ ] Between 5 and 10 years [ ] Greater than 10 years

6) How long after being diagnosed with lymphedema did you learn about lymphedema surgery as a potential treatment option?

[ ] At the time of diagnosis [ ] Less than 6 months

[ ] Between 6 months and 1 year [ ] Between 1 and 2 years after [ ] Between 2 and 5 years [ ] Between 5 and 10 years [ ] Greater than 10 years [ ] I was aware before diagnosis

7) How did you first learn about lymphedema surgery as a potential treatment for lymphedema?

[ ] Discussion with physician

[ ] Discussion with non-physician health care professional

[ ] Discussion with friend/family/acquaintance

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[ ] Internet

If internet, please describe source;

____________________________________

[ ] Non-Internet media outlet

If non-internet, please describe source;

___________________________________

[ ] Other

If other, please describe;

____________________________________

8) Which of the following methods have you used to learn about lymphedema surgery? Please select all that apply

[ ] Discussion with physician

[ ] Discussion with non-physician healthcare professional

[ ] Discussion with previous lymphedema surgery patient

[ ] Lymphedema support group [ ] Internet

If internet, please describe sources;

______________________________________

[ ] Social media

[ ] Non-Internet media outlet

If non-internet, please describe sources;

______________________________________

[ ] Other

If other, please describe;

_______________________________________

9) Based on your prior experience with physicians, what is your impression of physician knowledge of lymphedema surgery as a potential treatment for lymphedema?

[ ] Excellent; The majority of physicians are aware of the benefits and limitations of lymphedema surgery

[ ] Good; The majority of physicians are aware that lymphedema surgery exists as a treatment strategy for lymphedema, but are unaware of its benefits and limitations

[ ] Fair; Some physicians are aware that

lymphedema surgery exists as a treatment strategy for lymphedema

[ ] Poor; The majority of physicians are unaware that lymphedema surgery exists as a treatment strategy for lymphedema

[ ] I have not had enough experience with

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physicians to have an impression of their knowledge of lymphedema surgery

10) Which treatments have you previously received for your lymphedema? Please select all that apply.

[ ] Compression garments or bandaging [ ] Physical or occupational therapy [ ] Diuretics

[ ] Other medications

If other medications, please describe; _______

______________________________________

[ ] Surgery

If surgery, please describe; ________________

______________________________________

[ ] Other

If other, please describe; __________________

______________________________________

11) Have you previously had any surgery for reasons other than lymphedema?

[ ] Yes [ ] No

If yes, please list all previous surgeries: _______

_______________________________________

Part 2)

Please read carefully each statement below and chose the answer that best describes your expectation from lymphedema surgery.

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1) Expectations of Limb Appearance

When would you expect to see improvement in regards to the appearance of the affected limb following surgery?

[ ] Immediate improvement [ ] Within 1 week following surgery

[ ] Between 1 week to 1 month following surgery [ ] Between 1 to 3 months following surgery [ ] Between 3 to 6 months following surgery [ ] Between 6 months to 1 year following surgery [ ] Greater than 1 year following surgery

2) Expectations of Limb Function

Does not apply

No

Improvement

Partial

Improvement Will

completely Improve Mild

Improvement

Moderate Improvement

Significant Improvement

1 2 3 4 5

Improve swelling/size associated with lymphedema

Improve skin changes associated with lymphedema

Improve feel/hardness of affected limb Improve symmetry of limbs

Improve ability to wear clothes or accessories on affected limb

Improve overall aesthetic look of limb affected limb

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Does not apply

No

Improvement

Partial

Improvement Will

completely Improve Mild

Improvement

1 2 3 4 5

Relieve pain/tenderness associated with lymphedema

Improve limb heaviness associated with lymphedema

Improve decreased mobility of limb of affected limb

Improve strength of affected limb Improve performance of daily activities Improve performance of professional activities

Improve fatigue due to lymphedema

When would you expect to see improvement in regards to the function of the affected limb following surgery?

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3) Expectations of Overall Well-being

Does not apply

No

improvement

Partial Improvement

Will Completely Improve Mild

Improvement

1 2 3 4 5

Improve proper fit for clothing and shoes Improve ability to feel more comfortable in social environment

Improve body image confidence Improve mood

Improve intimate relationship Improve sexual activity

Remove dependence from others Remove the need for daily compression garments

When would you expect to see improvement in regards to your overall-well being following surgery?

4) Please list any other expectations you would have from lymphedema surgery: _______________________________________________

______________________________________________________________________________________________________________________

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______________________________________________________________________________________________________________________

5) Of your expectations for lymphedema surgery, please list the 5 that you feel are most important to you, in order of importance;

1) __________________________________________________________________

2) __________________________________________________________________

3) __________________________________________________________________

4) __________________________________________________________________

5) __________________________________________________________________