Standard of Care for Lipedema in the United States

美国脂肪水肿的护理标准

• 批准号: 9762399
• 负责人: KAREN Louise HERBST
• 金额: $ 0.3万
• 依托单位: UNIVERSITY OF ARIZONA
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-04-01 至 2020-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9762399
• 关键词: Area; Baltimore; Blood Vessels; Blood capillaries; Body Weight decreased; Cardiovascular system; Caring; Clinic; Clinical; Comorbidity; Consensus; Country; Data; Diagnosis; Disease; Early Diagnosis; Education; Endocrine; Endocrinology; Ensure; Environment; Evaluation; Exercise; Exposure to; Fatty acid glycerol esters; Fibrosis; Functional disorder; Germany; Goals; Guidelines; Health Personnel; Healthcare; Healthcare Systems; Hyaluronic Acid; Inflammation; Institutional Review Boards; International Statistical Classification of Diseases and Related Health Problems, Tenth Revision (ICD-10); Journals; Life Style; Liquid substance; Literature; Lymphatic; Lymphatic Diseases; Lymphatic vessel; Lymphedema; Manual Lymphatic Drainage; Measures; Medical; Medicine; Metabolic syndrome; Methods; Mission; Modality; Movement; National Heart, Lung, and Blood Institute; Nervous System Physiology; Netherlands; Obesity; Occupational Therapy; Occupations; Outcome; Pain; Paper; Patient Care; Patient Representative; Patients; Peer Review; Pharmaceutical Preparations; Physical Medicine; Physical therapy; Plastic Surgeon; Plastic Surgical Procedures; Population Heterogeneity; Proteins; Publications; Publishing; Publishing Peer Reviews; Quality of life; Questionnaires; Renaissance; Research; Research Support; Resistance; Resources; Risk; Seminal; Shame; Societies; Spain; Structure; Supervision; Swimming; Sympathetic Nervous System; Time; Tissue Therapy; Tissues; Training; United Kingdom; United States; Vascular Diseases; Water; Weight; Woman; Work; bariatric surgery; data sharing; diet and exercise; ethnic diversity; evidence base; exercise program; follow-up; healthcare community; improved; interstitial; macrophage; meetings; psychologic; racial diversity; standard of care; symposium; tool

Standard of Care for Lipedema in the United States (SOC Lipedema US) Dr. Karen Herbst has worked with patients with lipedema for over 15 years and is seeking support from the NHLBI for a meeting gathering experts and patients to develop a consensus paper on the diagnosis and care of people with lipedema. Lipedema is a common and painful fat disorder occurring primarily in women (ICD-10 E88.2). There are no formal guidelines for the care of women with lipedema in the US despite being first described in 1940 at the Mayo clinic. Guidelines on lipedema from Spain, the Netherlands, the United Kingdom and Germany have been published. Healthcare is not the same in the US compared to these countries, with different racial and ethnic diversity, high obesity rates, a large land mass, and a different healthcare system. The SOC Lipedema US meeting will occur April 11-12, 2019 at the Renaissance Baltimore Harborplace Hotel. This meeting occurs just before the Fat Disorders Resource Society (FDRS) meeting in the same hotel, April 12-14, 2019. The FDRS supports and educates patients and healthcare providers. Fifteen attendees with expertise in lipedema, vascular and plastic surgery, physical medicine & rehabilitation, medicine, obesity, phlebology, endocrinology, and physical and occupational therapy will gather with patient representatives under the guidance of a parliamentarian using the Appraisal of Guidelines for Research and Evaluation (AGREE) II as a framework to develop the SOC. Prior to meeting, attendees will receive all published lipedema guidelines, seminal papers on lipedema, and collated opinions from healthcare providers across the US collected using an Institutional Review Board approved questionnaire on SOC for lipedema. These data will be summarized in the beginning of the meeting by select attendees. Attendees form groups to discuss guidelines for the diagnosis of lipedema, clinical measures to ensure early detection of lipedema and follow up, and treatment and support of lipedema; afterwards they will gather to share data. The following morning collated data from the meeting will be discussed along with assignments for a consensus paper to be published in a peer- reviewed journal within the following year. The consensus paper generated from the meeting will provide evidence-based education for healthcare providers on lipedema and provide tools for care of patients in the US. The consensus meeting will also highlight areas in which more research is needed on the basic and clinical levels, especially in the area of vascular disease. The meeting will be summarized at the FDRS conference in the days following the meeting.

美国脂肪水肿护理标准（SOC Lipedema US）

项目成果

Standard of care for lipedema in the United States.

• DOI: 10.1177/02683555211015887
• 发表时间: 2021-12
• 期刊: Phlebology
• 影响因子: 1.7
• 作者: Herbst KL;Kahn LA;Iker E;Ehrlich C;Wright T;McHutchison L;Schwartz J;Sleigh M;Donahue PM;Lisson KH;Faris T;Miller J;Lontok E;Schwartz MS;Dean SM;Bartholomew JR;Armour P;Correa-Perez M;Pennings N;Wallace EL;Larson E
• 通讯作者: Larson E