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Lipoedema is a painful non-pitting diffuse “fatty” swelling, usually confined to the legs, that occurs mainly in women. This scoping review aimed to provide an overview of the available research on the functioning of people with lipoedema, according to the International Classification of Functioning, Disability and Health (ICF) framework. Relevant publications and gray literature were retrieved until October 2022. The results sections of each publication were organized using a thematic framework approach. All included studies reported at least one outcome fitting within the domains of body functions and body structures, with most studies focusing on the categories of “sensation of pain”, “immunological system functions”, and “weight maintenance functions”. The ICF domains of activities and participation and environmental factors were mentioned in a small number of the included studies (17 and 13%, respectively), while the domain of personal factors was studied in half of the included studies. In conclusion, the emphasis of lipoedema research is on its description from a disorder-oriented point of view in the form of body functions and body structures, with a lack of information about the other domains of functioning.
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BACKGROUND: The etiology of lipoedema remains unclear, making diagnosis and treatment challenging. Current treatment primarily consists of general lifestyle recommendations, with effective self-management being essential for integrating these recommendations into daily life. However, no self-management interventions currently address the unique needs of people with lipoedema. This study aimed to develop an evidence-based, theory-informed intervention to enhance self-management in people with lipoedema using the Intervention Mapping (IM) approach. METHODS: Following the first four steps of the IM approach, this study used a participatory methodology involving stakeholders, empirical data, and theory. Steps included: 1) needs assessment; 2) identification of outcomes, performance objectives, and change objectives; 3) selection of behavioural change methods; and 4) development of program components. RESULTS: The resulting intervention includes a program for people with lipoedema and a training program for healthcare professionals (HCPs). The intervention aims to empower patients to engage in self-management and equip HCPs to provide effective support. Key determinants targeted include self-efficacy, self-regulation skills, knowledge, attitudes, and social facilitation. The program for people with lipoedema consists of seven themes aligned with self-management behaviours and is delivered through 19 sessions: seven one-on-one sessions, one session involving supportive individuals, and 11 group sessions. The program for HCPs is delivered through six group sessions, each focusing on the core skills HCPs need to effectively deliver self-management support to their patients. CONCLUSION: The IM approach effectively guided a systematic, transparent, and reproducible development process. Grounded in established theories and behavioural change methods, the intervention provides a strong foundation for implementation and evaluation among people with lipoedema. The fifth and sixth steps of IM are considered future priorities.
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Lipedema is a chronic adipose tissue condition that primarily affects women. Despite increasing recognition of lipedema, the condition remains poorly understood and lacks standardized diagnostic criteria or confirmatory tests. Variability in definitions and measurement across clinical and research settings impedes comparability across studies, constraining the evidence base needed to support future advances in clinical practice and patient care. To address challenges associated with inconsistent definitions and data collection, the Lipedema Foundation (LF) partnered with clinicians, researchers, and biostatisticians to develop a Lipedema Common Case Report Form (CCRF). The CCRF was designed to be a research data harmonization tool and is not intended to define diagnostic standards or guide clinical treatment decisions. Its development involved review of published lipedema clinical guidelines and collaborative work to define data elements and attributes for inclusion. When they existed, validated or standardized measures were incorporated directly. When no suitable standardized measures were available, an iterative and collaborative process was used to develop lipedema-specific Common Data Elements (CDEs). The initial version of the CCRF was piloted in participants with and without lipedema, and updates based on participant and clinician feedback were incorporated into the CCRF. A biostatistical review evaluated data completeness, quality, and structure, leading to additional refinements. The final Version 1 instrument consists of 682 CDEs organized into four classifications: (1) Core, (2) Supplemental Highly Recommended, (3) Supplemental, and (4) Exploratory. The current version is prepared for dissemination in the field. By disseminating the CCRF broadly and encouraging adoption in all lipedema research beginning in 2026, including all newly initiated LF-funded projects, LF intends to evaluate its use with grantees and iterate systematically to achieve consistent and comparable data collection. The CCRF provides a structured framework for harmonized data collection that may facilitate comparability across studies and support future development of standardized diagnostic and research methodologies.
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