Table 1 Summary of statements
No. | Statement | Clarity of statement (%) | Level of agreement (%) | Inclusion Rating (%) | Strength of Evidence (%) | Additional Evidence Needed (%) |
|---|---|---|---|---|---|---|
DOMAIN 1: Definition & leading symptoms | ||||||
1 | Lipedema is a chronic disease. | 100,00 | 95,77 | 94,37 | 72,86 | 28,17 |
2 | Untreated lipedema typically presents as symmetrical, bilateral enlargement of subcutaneous adipose tissue in the extremities, accompanied by pain and/or discomfort. | 91,43 | 90,00 | 91,30 | 78,26 | 32,35 |
3 | Lipedema is characterized by a disproportional expansion of the subcutaneous adipose tissue of the extremities compared to that in the torso. | 91,04 | 89,55 | 89,55 | 71,88 | 37,88 |
4 | Lipedema can involve excess adipose tissue deposition in the upper extremities in a symmetrical and bilateral distribution. | 94,12 | 94,03 | 89,39 | 67,65 | 28,36 |
5 | Lipedema typically spares hands and feet of excess fat deposition. | 96,97 | 90,77 | 92,42 | 74,63 | 29,69 |
6 | Physical sensitivity to pressure and/or stretch is observed by methods such as palpation, and is mainly reported by patients as pain. | 100,00 | 98,51 | 98,48 | 59,70 | 38,81 |
7 | Increased sensitivity and pain caused by lipedema seem to be restricted to the body areas with lipedema-related volume increase. | 92,65 | 86,76 | 85,07 | 56,72 | 37,88 |
8 | Patients often report swelling or heaviness in affected areas. | 92,65 | 89,71 | 88,24 | 54,41 | 36,76 |
9 | Pitting edema is usually not present in lipedema-affected tissue. | 91,18 | 91,18 | 88,24 | 51,52 | 42,65 |
10 | Patients with lipedema often experience easy bruising in affected areas. | 95,45 | 94,03 | 92,54 | 58,21 | 35,82 |
11 | Kaposi-Stemmer’s sign is usually negative in lipedema. | 93,94 | 95,52 | 95,38 | 71,64 | 22,73 |
DOMAIN 2: Pathophysiology | ||||||
12 | Lipedema is a disease involving subcutaneous adipose tissue. | 90,91 | 92,54 | 90,91 | 78,79 | 20,90 |
13 | Numerous findings suggest that inflammation may contribute to the pathogenesis of lipedema. | 95,16 | 87,69 | 83,08 | 49,21 | 60,94 |
14 | Numerous findings suggest that hormonal factors may contribute to the pathogenesis of lipedema. | 96,83 | 96,88 | 92,06 | 58,06 | 56,25 |
15 | Several findings suggest that extracellular fluid volume might be elevated in lipedema-affected tissue compared to BMI-matched unaffected controls. | 87,10 | 76,19 | 72,58 | 46,77 | 66,13 |
DOMAIN 3: Epidemiology | ||||||
16 | Lipedema primarily affects biological females. Occurrence in biological males appears to be possible but rare. | 96,72 | 88,71 | 88,89 | 69,84 | 33,87 |
17 | Hormonal changes may trigger or exacerbate the symptoms of lipedema. | 100,00 | 98,39 | 98,36 | 63,93 | 36,51 |
18 | Lipedema is hereditary in some cases. | 96,77 | 88,71 | 88,89 | 63,93 | 47,54 |
19 | The prevalence of lipedema in the adult female population remains unknown. Estimates range from less than 1% to up to 12%. | 96,83 | 79,03 | 83,87 | 37,10 | 64,52 |
DOMAIN 4: Comorbidities & concomitant diseases | ||||||
20 | Obesity is a frequently observed concomitant disease in patients with lipedema. | 98,41 | 88,89 | 92,06 | 62,90 | 44,44 |
21 | Lipedema is not an obesity-related comorbidity. | 98,39 | 92,06 | 91,80 | 67,74 | 32,79 |
22 | Body mass index (BMI) has limited value in distinguishing between lipedema and obesity. Therefore, it is advisable to utilize the Waist-to-Height Ratio (WHtR) to exclude or assess obesity. | 95,16 | 77,42 | 78,69 | 64,52 | 40,98 |
23 | In cases where lipedema coincides with obesity, lipedema symptoms can be expected to persist after bariatric surgery. | 91,94 | 88,89 | 87,10 | 58,73 | 44,26 |
24 | Concomitant lymphostasis can develop in lipedema. | 90,16 | 88,52 | 86,67 | 44,26 | 53,33 |
25 | Several findings suggest that the prevalence of hypothyroidism might be higher in lipedema patients than in non-lipedema populations with comparable BMI and age. | 93,44 | 72,88 | 68,85 | 38,33 | 72,13 |
26 | Lipedema might be associated with connective tissue disorders, such as hypermobility spectrum disorders. | 96,72 | 75,41 | 72,13 | 36,67 | 66,67 |
DOMAIN 5: Impact on quality of life and symptom burden | ||||||
27 | Lipedema can negatively impact mental health and overall quality of life. | 100,00 | 98,36 | 98,33 | 70,00 | 39,34 |
28 | If present, psychological involvement may be caused by lipedema-related symptoms rather than being the cause of those symptoms. | 93,33 | 90,00 | 85,25 | 47,54 | 54,10 |
29 | Missed or delayed diagnosis or management of lipedema negatively affects a patient’s symptom burden, mental well-being, and overall quality of life. | 100,00 | 100,00 | 100,00 | 67,21 | 31,67 |
30 | Missed or delayed diagnosis or management of lipedema increases the cost burden for patients and the healthcare system. | 100,00 | 93,22 | 91,67 | 56,67 | 50,00 |
DOMAIN 6: Diagnostic approach | ||||||
31 | The clinical diagnosis of lipedema relies on the patient’s medical history, physical examination and exclusion of differential diagnoses. | 98,36 | 98,36 | 98,36 | 71,67 | 35,59 |
32 | Currently, no imaging, serological or genetic tests, or clinical measurement instruments, are officially approved to verify the clinical diagnosis. | 98,36 | 93,44 | 93,33 | 67,21 | 38,33 |
33 | Routine clinical exams should include standardized anthropometric measurements, such as waist-to-height ratio (WHtR), waist-to-hip ratio (WHR), and body mass index (BMI). | 96,67 | 81,97 | 75,41 | 56,67 | 44,07 |
34 | The clinical classification of lipedema into stages does not reflect the complete symptom severity. | 96,67 | 95,00 | 93,33 | 60,00 | 53,33 |
35 | The current clinical classification for lipedema into stages has limited relevance for the disease management. | 100,00 | 91,80 | 90,16 | 53,33 | 50,00 |
36 | A progression in the severity of lipedema-associated symptoms depends on various factors and is not universal. | 93,33 | 95,00 | 95,00 | 46,67 | 58,33 |
37 | The excess limb volume in lipedema is generally not associated with obesity. | 93,10 | 81,03 | 77,59 | 39,66 | 51,67 |
38 | The clinical classifications based on localization have only descriptive significance. | 95,00 | 88,33 | 86,67 | 38,33 | 44,07 |
DOMAIN 7: Treatment modalities | ||||||
39 | All therapeutic interventions of lipedema aim at alleviating symptoms and preventing or delaying progression. | 95,00 | 90,00 | 90,00 | 55,00 | 46,55 |
40 | Comprehensive disease management requires a multidisciplinary approach tailored to individual needs, which may involve physicians, physical therapists, dietitians, and mental health professionals. | 96,67 | 96,67 | 96,61 | 63,33 | 42,37 |
41 | Lipedema pain and physical sensitivity in lipedema-affected areas have been reported to be reduced by bandaging, compression, complete physical decongestive therapy or other physical therapies (such as shock wave therapy), dietary changes, tailored exercise, and lipedema reduction surgery, with varying effect sizes and durations. | 86,44 | 86,67 | 84,75 | 46,67 | 66,67 |
42 | Conservative management of lipedema should include lifestyle and nutritional optimization, compression therapy, and exercise to alleviate symptoms and improve quality of life. | 95,00 | 93,33 | 89,83 | 64,41 | 43,10 |
43 | Active self-management can help control lipedema-related symptoms and improve the overall quality of life. | 96,67 | 93,22 | 91,53 | 36,67 | 58,62 |
44 | Although Complex (also known as Complete) Decongestive Therapy (CDT) can be an important and effective treatment even for early-stage lipedema, not all components are required for every patient. | 95,00 | 86,67 | 86,67 | 40,00 | 52,54 |
45 | Nutritional guidance can help patients manage their weight, optimize overall health, reduce lipedema-associated symptoms and improve their response to therapeutic interventions. | 96,67 | 93,33 | 93,33 | 66,67 | 48,28 |
46 | Although pathological subcutaneous adipose tissue in lipedema is known to be largely resistant to dietary interventions, addressing overall weight loss in coincident obesity may result in symptom improvement. | 94,92 | 93,22 | 93,10 | 61,40 | 41,38 |
47 | Considering that obesity worsens the manifestations of lipedema, disease management should include weight optimization, with a focus on waist-to-height ratio (WHtR) and waist-to-hip ratio (WHR). | 91,67 | 84,75 | 81,67 | 51,67 | 50,85 |
48 | Psychological and social support, addressing body image issues, mental well-being, and coping strategies, can be important to address the symptom burden of patients living with lipedema. | 96,67 | 98,28 | 96,61 | 67,80 | 37,93 |
49 | Tailored exercises, such as physical activity in water, walking, and yoga, can help maintain mobility, address lipedema related symptoms and support weight management in individuals with lipedema. | 94,92 | 91,53 | 90,00 | 55,93 | 43,33 |
50 | Currently, there is no evidence for the effectiveness of any pharmacological interventions in treating lipedema. | 100,00 | 93,22 | 93,10 | 59,32 | 44,83 |
51 | In cases where lipedema coincides with obesity and metabolic disease, it is advisable to prioritize treatment for obesity before considering lipedema reduction surgery. | 100,00 | 93,22 | 91,53 | 66,10 | 41,38 |
52 | Lymph vessel-sparing lipedema reduction surgery should be considered when there is potential for a positive impact on lipedema-related symptoms. | 86,44 | 89,47 | 87,72 | 57,89 | 50,00 |
53 | Surgical interventions should be performed by healthcare providers with extensive knowledge in lipedema management, including conservative treatments, as part of an integral approach. | 98,31 | 98,31 | 98,31 | 52,54 | 43,86 |
DOMAIN 8: Future directions | ||||||
54 | Raising awareness about lipedema within the medical community and wider society is essential to reduce misdiagnosis and stigma. | 100,00 | 98,31 | 96,61 | 66,10 | 30,51 |
55 | A comprehensive standardized case report form (CRF) should be developed to improve consistency in diagnosis, lipedema reporting, follow-up, and research, and to facilitate, for example, both cohort and longitudinal studies. | 100,00 | 96,61 | 94,92 | 55,17 | 43,10 |
56 | Further research is needed to elucidate the biological mechanisms underlying lipedema, leading to objective diagnostic criteria and targeted therapies. | 98,31 | 100,00 | 98,31 | 56,90 | 45,61 |
57 | Studies are required to validate diagnostic modalities for lipedema, which assess their reproducibility, sensitivity, and specificity. | 100,00 | 100,00 | 96,61 | 57,89 | 42,11 |
58 | Long-term studies are required to assess the efficacy and safety of treatment modalities for lipedema. | 100,00 | 100,00 | 98,31 | 57,14 | 47,27 |
59 | Collaborative efforts between patients, researchers, clinicians and advocacy groups are crucial for advancing knowledge. Translational practice-based application of research knowledge should improve patient care. | 100,00 | 98,31 | 94,92 | 56,14 | 36,84 |