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  • Background: Lipedema, a chronic condition affecting mostly women, involves painful bilateral increase of subcutaneous adipose tissue. The societal impact of this disease is still poorly understood. This study aimed to validate the Lymphedema Quality-of-Life Questionnaire (LYMQOL) for lipedema patients in Germany, assessing its feasibility, reliability, and validity.Methods and Results: A total of 81 German-speaking stage II lipedema patients were asked to complete both the LYMQOL (arm and leg versions) and the Short Form Health Survey (SF-36) questionnaires twice, and this was 2 weeks apart. Feasibility was evaluated through response rates, scale structure via factor analysis, validity through SF-36 correlations, and reliability through internal consistency and test-retest reliability analysis. A valid 68% response rate was achieved. Both arm and leg versions demonstrated construct validity with significant correlations to SF-36 subscales. Internal consistency for the leg version was acceptable to excellent, and good to excellent for the arm version. Test-retest reliability was very good for both versions.Conclusions: This study validates the LYMQOL as a robust tool for assessing lipedema patients’ quality of life, and also validates the German translation contained in this article. We hope to fill a critical research gap and support future clinical studies aiming at enhancing patient care.

  • Background: Lymphedema and lipedema are debilitating conditions with no proven drug or surgical therapy. Effective treatment requires self-management through movement and compression to reduce limb volume and the incidence of cellulitis. The addition of personalized everyday physical activity (PA) could be transformative, increasing the therapy window to include all waking hours per week and enabling an increased dose of PA. Aim: This service evaluation aimed to determine the feasibility of LymphActiv as a treatment option for lymphedema and lipedema patients. Methods: This service evaluation followed an open observational cohort design, including 55 patients who participated in LymphActiv over 24 weeks. Patients wore an objective PA monitor and interacted with their data in an online dashboard, alongside remote mentor support. Primary outcomes were changes to PA, body weight, limb volume and quality of life. Clinical assessments occurred at baseline and after the 24-week program. Noncompleters were used as a quasi-control group for comparison. Results: Thirty-seven patients completed, of which 81% improved PA. On average, completers reduced their right and left lower limb volumes by -1.8% and -2.1%, respectively. Completers also experienced small average weight losses of -1.2 kg. Noncompleters experienced small average increases in each of these outcome measures. Discussion: These results establish the value of LymphActiv, providing benefit to patients who might otherwise have deteriorated. For services, this could lead to substantial cost-savings through reduced admissions, greater patient independence, and less need for community health care input. The next step is to undertake a randomized, controlled trial comparing the intervention with standard care.

  • Lipoedema is a chronic adipose tissue disorder mainly affecting women, causing excess subcutaneous fat deposition on the lower limbs with pain and tenderness. There is often a family history of lipoedema, suggesting a genetic origin, but the contribution of genetics is currently unclear. A tightly phenotyped cohort of 200 lipoedema patients was recruited from two UK specialist clinics. Objective clinical characteristics and measures of quality of life data were obtained. In an attempt to understand the genetic architecture of the disease better, genome-wide single nucleotide polymorphism (SNP) genotype data were obtained, and a genome wide association study (GWAS) was performed on 130 of the recruits. The analysis revealed genetic loci suggestively associated with the lipoedema phenotype, with further support provided by an independent cohort taken from the 100,000 Genomes Project. The top SNP rs1409440 (ORmeta ≈ 2.01, Pmeta ≈ 4 x 10–6) is located upstream of LHFPL6, which is thought to be involved with lipoma formation. Exactly how this relates to lipoedema is not yet understood. This first GWAS of a UK lipoedema cohort has identified genetic regions of suggestive association with the disease. Further replication of these findings in different populations is warranted.

Last update from database: 10/30/25, 7:25 AM (UTC)

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