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Resumen Introducción El lipedema es el depósito de tejido graso doloroso fundamentalmente en miembros inferiores. Afecta casi siempre a mujeres, y está infradiagnosticado e infratratado. El objetivo del estudio es describir las características del diagnóstico y los tipos de tratamientos realizados por los pacientes con lipedema en España. Material y métodos Estudio descriptivo transversal mediante encuesta online anónima realizada entre noviembre-diciembre 2019. Se calculó el tamaño muestral mínimo para un nivel de confianza del 95% y margen de error del 5%. Se recogieron las variables sociodemográficas (edad, sexo y comunidad de residencia), aspectos diagnósticos y la mejoría percibida con diferentes opciones de tratamiento. Resultados Se obtuvieron 463 respuestas válidas. La edad media de inicio de la sintomatología fue de 18,2 años (DE: 9,0). El 69% de los pacientes comenzaron con clínica entre los 10-19 años. Transcurrieron 19,9 años (DE: 10,1) desde el inicio de la clínica, y se necesitaron 4,9 visitas médicas (DE: 3,3) para obtener un diagnóstico. El diagnóstico se realizó con más frecuencia en la medicina privada por cirujanos. El 78,4% de los pacientes probaron, al menos, 3 tipos diferentes de tratamientos. La pérdida de peso fue el tratamiento más utilizado y las prendas de compresión la opción percibida como más efectiva. Un 34% de los pacientes tienen acceso a la prescripción de prendas de compresión. Conclusiones Actualmente el lipedema carece de un tratamiento estandarizado, y las diferentes terapias realizadas no son percibidas como satisfactorias por los pacientes. Es necesario mejorar su conocimiento para obtener un diagnóstico temprano y proporcionar a los pacientes tratamientos adecuados. Introduction Lipedema is a chronic and progressive disease. Most studies agree that it is underdiagnosed and undertreated. The aim of this study was to identify the diagnostic characteristics and types of treatment for lipedema in the Spanish population. Material and methods A cross-sectional descriptive study was carried out through an anonymous 10-item online survey in November- December 2019. The minimum sample size was calculated for a 95% confidence level and 5% margin of error. Information was collected on sociodemographic variables (age, sex, place of residence), diagnostic characteristics and perceived improvement with distinct treatment options. Results A total of 463 valid responses were obtained. The mean age at first manifestation was 18.2 (SD: 9.0) years. Onset occurred between the ages of 10 and 19 years in 69% of the patients. It took an average of 19.9 (SD: 10.1) years to receive a diagnosis and 4.9 medical visits. Diagnosis was most frequently made in private clinics by surgeons. Most patients (78.4%) had tried at least three different types of treatment. Weight loss was the most frequent treatment (92%) and compression garments were perceived to be the most effective. Only 34% of respondents had access to financing for compression garments. Conclusions Currently, there is no standard treatment for lipedema and patients perceive current treatments to be unsatisfactory. Better knowledge of this entity is needed to allow early diagnosis and provide adequate treatment.

Lipoedema, an adipose tissue disorder, is a poorly visible, often unrecognised condition. To foster a greater understanding of the significant and debilitating impacts faced by women living with lipoedema, the charity Lipoedema UK conducted four focus group interviews, the findings of which were published in a series of reports under the umbrella title 'Women in dire need'. The reports identified the substantial and numerous negative effects of lipoedema on the women's everyday lives, including the patients' experiences with compression garments, the effects of liposuction surgery (many of which were not positive), the everyday impacts ranging from pain and reduced mobility to poor self-esteem and working prospects, and the considerable challenges faced by women with late-stage lipoedema which can render them immobile.

BACKGROUND: Although a large number of adult women worldwide are affected by lipedema, the physiologic conditions triggering onset and progression of this chronic disease remain enigmatic. In the present study, a descriptive epidemiologic situation of postoperative lipedema patients is presented. METHODS: The authors developed an online survey questionnaire for lipedema patients in Germany. The survey was conducted on 209 female patients who had been diagnosed with lipedema and had undergone tumescent liposuction. RESULTS: Most of the participants (average age, 38.5 years) had noticed a first manifestation of the disease at the age of 16. It took a mean of 15 years to accomplish diagnosis. Liposuction led to a significant reduction of pain, swelling, tenderness, and easy bruising as confirmed by the majority of patients. Hypothyroidism [n = 75 (35.9 percent) and depression [n = 48 (23.0 percent)] occurred at a frequency far beyond the average prevalence in the German population. The prevalence of diabetes type 1 [n = 3 (1.4 percent)], and diabetes type 2 [n = 2 (1 percent)] was particularly low among the respondents. Forty-seven of the lipedema patients (approximately 22.5 percent) suffered from a diagnosed migraine. Following liposuction, the frequency and/or intensity of migraine attacks became markedly reduced, as stated by 32 patients (68.1 percent). CONCLUSIONS: Quality of life increases significantly after surgery with a reduction of pain and swelling and decreased tendency to easy bruising. The high prevalence of hypothyroidism in lipedema patients could be related to the frequently observed lipedema-associated obesity. The low prevalence of diabetes, dyslipidemia, and hypertension appears to be a specific characteristic distinguishing lipedema from lifestyle-induced obesity.

Lipedema is a chronic, progressive adipose tissue disorder that may impact the quality of life of women who suffer from it. The main aim of this study was to asses the role of perceived symptom severity, physical and psychological functioning with the disease in predicting quality of life in patients with lipedema. We conducted an online study with 329 participants who responded to five questionnaires measuring quality of life (World Health Organization Quality of Life BREF), lipedema symptom severity, mobility (Lower Extremity Functional Scale), depression (Patients Health Questionnaire-9), and appearance-related distress (Derriford Appearance Scale 24). Multiple hierarchical regression analyses showed that appearance-related distress and depression explained significantly more variance in quality of life when added to the symptom severity and mobility. Lower quality of life was predicted by higher symptom severity, lower mobility, higher appearance-related distress and higher depression severity. Appearance-related distress and depression constitute important aspects of psychological functioning in women with lipedema. Considering their relationship with quality of life, their assessment should be included in lipedema treatment with appropriate interventions aimed at decreasing appearance-related distress, as well as preventing and addressing depression.

BACKGROUND: Implementation of guideline recommendations for the diagnosis and therapy of lipedema and lymphedema seems to be problematic in daily routine. Systematic data for Germany are missing. The aim of the study was data collection regarding diagnosis and therapy of lymphologic diseases in an outpatient setting. METHODS: Monocentric, prospective survey of patients from a lymphologic outpatient clinic using a standardized questionnaire focusing on diagnostics and therapy at the initial diagnosis. RESULTS: In all, 72 patients (83.3% women) with lymphedema (n = 26), lipedema (n = 14) or lipolymphedema (n = 32) were included; 44.4% had symptoms more than 5 years before the initial diagnosis. Main symptoms were swelling of the leg and foot (especially lymphedema) and feeling of heaviness (especially lipedema). In 75%, the initial diagnosis was made by a medical specialist. The basic diagnostics recommended by the guidelines-medical history (73.6%) and clinical examination (84.7%)-were done in most of the patients. After the initial diagnosis, 46% of the patients had decongestion therapy of different intensity and quality. A total of 58.3% of the patients were directly provided a prescription for a medical stocking. Only a few patients received instructions for breathing exercises (22.2%), self-performed lymphatic drainage (6.9%) or muscle exercises (8.3%). DISCUSSION: There are still deficits in the diagnosis and especially in the therapy of patients with lymphologic diseases in an outpatient setting. Further education and training are necessary for physicians, physiotherapists, medical supply businesses, and patients.

INTRODUCTION: Lipoedema is a chronic disorder in which excessive fat distribution occurs predominantly from the waist down, resulting in a disproportion between the lower extremities and upper torso. Lipoedema is often not recognized, while patients experience pain and easy bruising. As a long-term condition, lipoedema has a massive effect on patients' lives and mental health. The aim of this study is to explore patient characteristics, quality of life, physical complaints and comorbidities in patients with lipoedema. METHODS: A survey was conducted by email amongst lipoedema patients, consisting of informed consent and multiple questionnaires. The questionnaires included general patient characteristics, physical complaints, comorbidities, RAND-36 and EQ-5D-3L. Participants who responded to a message on the Dutch Lipoedema Association website were recruited. RESULTS: All lipoedema patients experience physical complaints, with pain (88.3 %) and easy bruising (85.9 %) as primary complaints. The diagnosis was mostly made by a dermatologist after visiting a mean of 2.8 doctors. Furthermore, mean time from onset until diagnosis was 18 years. Quality of life (59.3) was significantly lower than the Dutch female average (74.9; p < 0.001). Additionally, patients with comorbidities had significant lower quality of life (RAND 54.7, p < 0.001). CONCLUSIONS: Lipoedema patients often have severe complaints and experience lower quality of life regarding physical, emotional and social functioning. Additionally, comorbidities have a large impact on quality of life.

This study aimed to explore patients' perceptions regarding the impact that lower limb chronic oedema has on their quality of life (QoL). A quantitative descriptive design was used to collect data from patients with lower limb chronic oedema. A condition-specific validated questionnaire was distributed to a purposive sample (n = 122) through manual lymphatic drainage/vascular/health clinics in Ireland. Results indicated that patients with lower limb chronic oedema experience a wide range of physical problems such as limb heaviness (74%, n = 66), weakness (44%, n = 40) and pain (38%, n = 34). Additionally, difficulties with walking (53%, n = 48), standing (51%, n = 46) and bending (45%, n = 40) were reported. Concerns regarding poor body image were strongly evident (76%, n = 68). Difficulties finding clothing/footwear to fit oedematous limb(s) were reported (59%, n = 53), in addition to finding clothes that participants would like to wear (64%, n = 58). Emotional symptoms of irritability (42%, n = 38), anxiety (41%, n = 37) and tension (40%, n = 36) were reported. Over half of the participants (55%, n = 49) stated that their chronic swelling affected their social functioning and their ability to engage in leisure activities. This study has identified that lower limb chronic oedema has significant psychological, social and physical implications for persons' QoL.

PURPOSE: Lipoedema is a chronic, progressive adipose disorder of unknown etiology, often underdiagnosed or misdiagnosed as obesity. It manifests itself with accumulation of the fat in lower parts of the body and associated edema and, due to numerous physical and psychological consequences, affects the quality of life (QOL) of those who suffer. The aim of this study was to investigate the psychological factors that might have an impact on the QOL of women with lipoedema from the contextual behavioral viewpoint. METHODS: In an Internet-based cross-sectional study, women suffering from lipoedema (N = 120) were asked to fill in questionnaires assessing: symptom severity, QOL (WHOQOL-BREF), satisfaction with life (SWLS), psychological flexibility (Acceptance and Action Questionnaire-II), social connectedness (Social Connectedness Scale-Revised) and other psychological factors. The majority of participants were from the USA, the UK, and Australia. RESULTS: Multiple hierarchical regression analyses showed that a higher level of QOL was predicted by higher levels of psychological flexibility and social connectedness, while controlling for symptom severity. Higher level of SWL was predicted only by higher level of social connectedness. CONCLUSIONS: Acceptance and Commitment Therapy with psychological flexibility as the target of change and Functional Analytic Psychotherapy with social connectedness as the target of change might be useful in treating women with lipoedema; however, further research in this area is needed. The authors conclude that psychological and biomedical interventions for women with lipoedema and their QOL merit more attention from researchers and the medical community than is currently received.

Objectives: The aim of this study was to determine the ability of the central sensitization inventory (CSI), a new screening instrument, to assist clinicians in identifying patients with central sensitivity syndromes (CSSs). Methods: Patients from a psychiatric medical practice (N = 161), which specialized in the assessment and treatment of complex pain and psychophysiological disorders, were assessed for the presence of a CSS. CSI scores, using a previously determined cutoff of “40” of “100,” were compared between the CSS patient group (n = 99) and the non-CSS patient group (n = 62). Information on false positives, false negatives, true positives, and true negatives were analyzed, and sensitivity and specificity analyses were conducted. In addition, CSS-relevant variables such as depression, abuse, and substance abuse were examined. Results: A large percentage of CSS patients had comorbid major depressive disorder (80%) and abuse history (43%), which was higher than rates for the patients without a CSS (55% and 24%, respectively). The CSI correctly identified 82.8% (n = 82) of CSS patients as having a CSS (ie, sensitivity) and 54.8% (n = 28) of non-CSS patients as not having a CSS (ie, specificity). False-positive patients (not diagnosed with a CSS, but scoring >40 on the CSI) reported more severe pain, interference in daily functioning, and abuse history, compared with the non-CSS patients who scored below 40 (ie, true negatives). Conclusions: The CSI is a useful and valid instrument for screening patients for the possibility of a CSS, although the chances of false positives are relatively high when evaluating patients with complex pain and psychophysiological disorders.

In 2014 250 women with Lipoedema took part in our survey about their experiences with Lipoedema. The results give a clear picture of what living with Lipoedema is like and reveal that along with the pain and discomfort caused by Lipoedema, many simple tasks that other people regard as straightforward become extremely challenging for people with Lipoedema. Lipoedema UK’s Big Survey 2014 led to the development of the Royal College of GPs’ e-learning course, a half hour course, which enables GPs to recognise Lipoedema and diagnose patients Our survey was created by Lipoedema UK, the Lymphoedema Department at St George’s Hospital, London, and the support of the Lymphoedema Support Network.

Lipoedema UK was founded in 2012 by women with lipoedema and clinicians working in the Lymphoedema Service at St George's Hospital in London. Its patron is Professor Peter Mortimer, the UK's leading Lipoedema expert, and its nurse consultant is Sandy Ellis, who diagnoses and treats many women with Lipoedema in the UK and is also the nurse consultant in the St George's team. The charity's objectives are to educate doctors, health professionals and the public about lipoedema and its symptoms, so it may be diagnosed and treated earlier.