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.
Background: Lipoedema is a chronic disorder of adipose tissue typically involving an abnormal build-up of fat cells in the legs, thighs and buttocks. Occurring almost exclusively in women, it often co-exists with obesity. Due to an absence of clear objective diagnostic criteria, lipoedema is frequently misdiagnosed as obesity, lymphoedema or a combination of both. The purpose of this observational study was to compare muscle strength and exercise capacity in patients with lipoedema and obesity, and to use the findings to help distinguish between lipoedema and obesity. Design: This cross-sectional, comparative pilot study performed in the Dutch Expertise Centre of Lymphovascular Medicine, Drachten, a secondary-care facility, included 44 women aged 18 years or older with lipoedema and obesity. Twenty-two women with lipoedema (diagnosed according the criteria of Wold et al, 1951) and 22 women with body mass index ≥30kg/m2 (obesity) were include in the study. No interventions were undertaken as part of the study. Results: Muscle strength of the quadriceps was measured with the MicroFET™, and functional exercise capacity was measured with the 6-minute walk test. The group with lipoedema had, for both legs, significantly lower muscle strength (left: 259.9 Newtons [N]; right: 269.7 N; p < 0.001) than the group with obesity. The group with lipoedema had a non-significant, but clinically relevant lower exercise-endurance capacity (494.1±116.0 metres) than the group with obesity (523.9±62.9 metres; p=0.296). Conclusions: Patients with lipoedema exhibit muscle weakness in the quadriceps. This finding provides a potential new criterion for differentiating lipoedema from obesity. We recommend adding measuring of muscle strength and physical endurance to create an extra diagnostic parameter when assessing for lipoedema.
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