Characteristics and Patient Reported Outcome Measures in Lipedema Patients—Establishing a Baseline for Treatment Evaluation in a High-Volume Center

Abstract

Lipedema patients suffer not only from visual stigma but also reduction in their quality of life through pain and performance loss in daily life. In clinical practice, it is still difficult to reliably diagnose the disease. This study aims to provide further insights into the characteristics of lipedema patients of all stages and provide a baseline prior to surgery for a surgical treatment evaluation by means of patient-reported outcome measures. Methods: Patients completed a lipedema-specific questionnaire containing 50 items, the World Health Organization Quality of Life BREF (WHOQOL-BREF) and the Patient Health Questionnaire 9 (PHQ-9). The data were analyzed using SPSS statistics 27. Patients who had already received liposuction were excluded. Results: Five hundred and eleven patients were included, of whom 337 completed the PHQ9 and 333 completed the WHOQOL-BREF questionnaires. The general characteristics of lipedema patients, especially the daily symptoms, are described. Previous observations, such as the frequent occurrence of hypothyroidism and the low rate of type 2 diabetes, were confirmed. Over 49% suffer from severe impairments in their jobs, whereby the disease shows a familial accumulation. The results of the WHOQOL-BREF and the PHQ-9 suggest a high level of mental stress. Discussion: As surgical intervention in lipedema patients is gaining traction, its effects should be well-documented. Therefore, a comprehensive baseline needs to be established prior to surgical treatment. The psychological components are just as important as the inclusion of daily impairments.

Differentiation of lipoedema from bilateral lower limb lymphoedema by imaging assessment of indocyanine green lymphography

“…Coupled with a high prevalence of obesity which is consistently reported at up to 80% of the lipoedema population, the diagnosis of ‘pure’ lipoedema is made more difficult 4 . Lipoedema has been demonstrated to impact patient‐reported occupational capacity and health‐related quality of life 5 . The genetic background of the condition has not been fully elucidated; however, the phenotype suggests an autosomal‐dominant‐sex limited with incomplete penetrance hereditary pattern 6 …”

Understanding the Vicious Circle of Pain, Physical Activity, and Mental Health in Lipedema Patients – a Response Surface Analysis

“…For example, the substantial edema inside and outside the legs can cause the knees to bend in-or outward and to exact orthopaedical care. In all stages, lipedema can signi cantly affect the patients' professional and everyday lives [4], [14]. Up to now, there is no causal therapeutic concept to cure lipedema [3].…”

“…Pain in lipedema patients has many facets. It may arise for instance from disease-immanent tissue alterations causing physical impairment but may in addition stem from the awareness of disease-driven reduction of physical activity [7], [19], eventually even affecting the patients' basic mobility [4]. At the same time, lipedema patients often suffer from obesity as a comorbidity, accentuating the high relevance to enhance weight loss [10], [13], [20].…”

“…Mental Health in Lipedema. Patients suffering from lipedema reported a signi cant impairment in their quality of life (QoL) [4], [12]. Quality of life is an indicator of overall perceived health, subsuming aspects of both physical and mental health [29].…”

“…The current state of evidence indicates that pain, physical activity, and aspects of mental health such as symptoms of depression and QoL stand in a compound interaction. Physical inactivity and continuous perception of pain could result in a vicious-circle-like negative synergy that negatively in uence aspects of mental health [4], [12], [15], [25]. Response surface analysis (RSA) can serve as a method being based on polynomial regression analysis [34]- [36].…”