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Introduction

Lipedema/lipoedema is a disease where loose connective (fat) tissue develops primarily on the limbs of women. LIO Lipedema Italia, Lipoedema UK and AndLINFA have put together a questionnaire to better understand the opinions of providers around the world on certain facets of lipedema.

We plan to collate the data we collect from this questionnaire and provide it in published form for everyone to read.

Your participation is voluntary.

There is no cost to participate and no renumeration for participating.

You will be asked a question. Once you have answered the question you will also be asked to rate your answer.
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RATE your recommendation for your answer as strong or weak using the GRADE system:
Strong Recommendation (Grade 1)
Weak Recommendation (Grade 2)
->Think about the balance between benefits, risks, burden, and cost, and the degree of confidence in estimates of benefits, risks, and burden.

Rate the quality of evidence used to support your answer.
High (Grade A)
Moderate (Grade B)
Low (Grade C)
->Rate according to factors including the risk of bias, precision of estimates, the consistency of the results, and the directness of the evidence.

Use UpToDate as a reference.

You can find papers to help answer the questions below here.

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* 1. What is your name?

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* 2. What is your profession? Choose all that apply.

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* 3. Please state your professional title.

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* 4. Do you currently or have you in the past 5 years
worked with patients with lipedema?

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* 5. How many years have you worked with patients with
lipedema?

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* 6. Approximately how many patients in total have you
treated that have lipedema?

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* 7. What country do/did you work in?

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* 8. What is your email.

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* 9. The research staff may contact me to clarify my
answers.

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* 10. EDEMA
The Bertsch and Erbacher 2020 JWC article states there is no edema in lipedema tissue (Click here for paper).

This means that women with lipedema should not be offered manual lymphatic drainage (MLD) or sequential pneumatic compression pump therapy, and that compression garments are useful for pain only.

Many other papers state there is edema in lipedema tissue (Click here for papers). Water is present in loose connective tissue bound to glycosaminoglycans (GAGs; complex branched sugar molecules) along with sodium, as well as free flowing with proteins (albumin), electrolytes and other constituents of intercellular (between cells) fluid. That water is present in tissue bound + free has been known for almost 50 years (Guyton, 1965; Click here for paper). When lymphedema initially begins, GAGs increase to help bind up the extra fluid.
Glycosaminoglycans when bound to a protein backbone are called proteoglycans.  Proteoglycans increase with increasing fat tissue.  It stands to reason that in lipedema tissue, proteoglycans are increased along with fluid in a pre-lymphedema condition.

Do you think there is edema in lipedema tissue?

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* 11. Grade the strength of your recommendation for edema as strong or weak.

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* 12. Grade the Quality of Evidence to support your answer on edema.

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* 13. MENTAL HEALTH AND PAIN
The Bertsch and Erbacher 2020 JWC article (Click here for paper) states that pain in lipedema develops after mental health issues, such as depression and anxiety.

Do mental health issues precede pain in patients with lipedema?

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* 14. MENTAL HEALTH AND PAIN
An article by Joanna Dudek et al. (Click here for paper) states lipedema tissue and pain develop before mental health issues.  In other words, the inability to lose lipedema fat by diet and exercise, pain, and lower quality of life can lead to depression and anxiety in people with lipedema.

Does lipedema tissue and its pain develop before mental health issues in patients with lipedema?

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* 15. Please rate your answers on mental health and pain in patients with lipedema.
Grade the strength of your recommendation as strong or weak.

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* 16. Grade the Quality of Evidence to support your answer on mental health and pain.

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* 17. PROGRESSION OF LIPEDEMA
The Bertsch and Erbacher 2020 JWC article (Click here for paper) states that people with lipedema develop more fat tissue over time not because of lipedema but because they develop non-lipedema adipose tissue (obesity).
Can lipedema tissue increase or progress over time?

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* 18. Please rate your answers on progression of lipedema tissue over time.
Grade the strength of your recommendation as strong or weak.

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* 19. Grade the Quality of Evidence to support your answer on progression of lipedema.

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* 20. PAIN
A number of papers have shown that not all women with lipedema have pain (Click here for papers). 
Adiposis dolorosa (painful fat) was used to describe lipedema, however, there are other fat diseases that are painful so this name is not used very much anymore. Bertsch and Erbacher 2020 JWC article want to call lipedema Lipalgia Syndrome (painful fat).

Do you think we should rename lipedema/lipoedema to Lipalgia Syndrome at this time?

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* 21. PAIN
Lipedema tissue is painful when touched or pressed.

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* 22. Do some women with lipedema have no pain in the lipedema tissue?

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* 23. Please rate your answer on pain.
Grade the strength of your recommendation as strong or weak.

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* 24. Grade the Quality of Evidence to support your answer on pain.

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* 25. EXERCISE
Can lipedema tissue be reduced by exercise? Exercise can include cardio, strength training, yoga, etc.

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* 26. Please rate your answers on whether exercise reduces lipedema tissue.
Grade the strength of your recommendation as strong or weak.

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* 27. Grade the Quality of Evidence to support your answer on exercise.

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* 28. DIET
Some publications state that, by definition, dieting
and weight loss do not affect lipedema tissue.
This is demonstrated in a recent study on the
Mediterranean diet where women with lipedema lost as
much weight as control women but there was no change
in the percent fat on the body (Click here for papers). 

Can lipedema tissue be lost by diet?

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* 29. Please rate your answers on whether diet(s) can reduce lipedema tissue.
Grade the strength of your recommendation as strong or weak.

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* 30. Grade the Quality of Evidence to support your answer on diets.

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* 31. BARIATRIC SURGERY
The Bertsch and Erbacher 2020 JWC article (Click here for paper) gives examples of how fat tissue was lost by bariatric surgery and stated that the tissue lost was lipedema tissue.

Other papers demonstrate the inability of bariatric surgery to reduce lipedema tissue (Click here for papers).

Click here for an example of a picture of a woman with lipedema after bariatric surgery and other papers that discuss bariatric surgery for patients with lipedema.

Does bariatric surgery reduce the majority of lipedema tissue?

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* 32. Please rate your answers on whether bariatric surgery can reduce lipedema tissue.
Grade the strength of your recommendation as strong or weak.

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* 33. Grade the Quality of Evidence to support your answer on bariatric surgery.

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* 34. LIPOSUCTION
Baumgartner and coworkers reported 4-, 8- and 12-year follow-up on 71 lipedema patients treated with liposuction using tumescent local anesthesia (Click here for paper). Compared with earlier results, improvement persisted in the measures of spontaneous pain, sensitivity to pressure, edema, bruising, restriction of movement, self-assessment of appearance, quality of life and overall impairment.
While in the period from 4 to 8 years postoperatively complaints slightly increased, this was not the case for the period 8 to 12 years postoperatively.

In addition a similar reduction of conservative treatment (decongestive therapy, compression garments) was observed at 12 years post-operatively compared to after 4 and 8 years.
Compared with the body weight before liposuction, 55% of the patients showed a reduction of 6.2 kg on average and 43.3% had a weight increase with an average of 7.9 kg (Click here for paper).

The Bertsch and Erbacher 2020 JWC article (Click here for paper) states that liposuction will "in no way result in a substantial, permanent
or even only approximately satisfactory weight loss."

Other studies have followed patients with lipedema for 12 years after liposuction demonstrating an obvious reduction of circumferences in hips and extremities with a distinct improvement of body size, a minor reduction of weight and the disappearance of disproportionality between the upper and lower parts of the body.

Do you think liposuction results in loss of lipedema and other fat tissue with a reduction of weight?

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* 35. Please rate your answers on whether liposuction surgery can effectively reduce weight in patients with lipedema.
Grade the strength of your recommendation as strong or weak.

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* 36. Grade the Quality of Evidence to support your answer on liposuction.

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* 37. LIPOSUCTION
Do you think liposuction for lipedema improves the quality of life of women with lipedema for up to 12 years and possibly longer?

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* 38. Please rate your answers on whether liposuction surgery improves quality of life in patients with lipedema.
Grade the strength of your recommendation as strong or weak.

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* 39. Grade the Quality of Evidence to support your answer on long-term liposuction benefit.

0 of 39 answered
 

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