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.
Background: The cause of lipoedema remains unclear, and the condition is currently incurable. Effective self-management is therefore essential for coping with its physical and psychological impacts and the necessary lifestyle adjustments. This study aimed to assess the needs, barriers, and facilitators for enhancing self-management and self-management support from the perspectives of people with lipoedema and the healthcare professionals (HCPs) involved in their care. Methods: The study used a mixed-methods approach, incorporating a narrative review focused on people with chronic conditions and their HCPs, along with focus groups involving people diagnosed with lipoedema and the HCPs involved in their care. The Core Processes of the Intervention Mapping method guided a systematic approach to address the study’s objectives. Qualitative data were analyzed using a grounded theory approach. Results: Findings revealed unique self-management barriers for people with lipoedema, including limited awareness and expertise among HCPs, as well as stigmatization from both HCPs and society. Participants identified a need for tailored lifestyle plans, guidance, and support for monitoring progress. Key facilitators included self-management skills, supportive networks, and role models. HCPs noted barriers in communication and collaboration due to a lack of specialized professionals and negative attitudes toward lipoedema. They expressed a need for multidisciplinary/interprofessional teams, accurate diagnosis, patient openness, and reliable information resources. Facilitators included fostering trust, encouraging patient participation, and setting achievable goals. Conclusion: This study underscores the need for tailored self-management interventions for people with lipoedema. The adaptation of existing self-management strategies from other chronic conditions should take into account the specific needs, barriers, and facilitators of people with lipoedema and their HCPs.
