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Lipoedema is a disorder of adipose tissue that occurs almost exclusively in women; the pathophysiology and aetiology are yet not well understood (Wold et al, 1951; Child et al, 2010; Fife et al, 2010). The condition was originally described in 1943 by Allen and Hines (Wold et al, 1951). The exact prevalence of lipoedema in women is unknown; its presence in the general female population has been estimated at 11% (Földi and Földi, 2012). It is a chronic, progressive condition that is associated with considerable morbidity, including discomfort, easy bruising and tenderness of the disproportionately enlarged legs, which may progress to highintensity pain and limited mobility, along planus, and complaints about general fatigue and physical impairment are often observed. In later stages, body mass index (BMI) ≥30 kg/m2 (obesity) may also develop. Clinical characteristics of lipoedema include swelling and symmetrical enlargement of the lower limbs due to abnormal deposition of subcutaneous fat, with a sharp transition area of affected to unaffected tissue occasionally accompanied by over-hanging lipoedema tissue (Box 1). This is recognised as the typical ‘cuff-sign’, also called as ‘inverse shouldering’ or the ‘bracelet effect’. Lipoedema often co-exists with obesity, and obesity may be misdiagnosed, although Abstract
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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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