Exploring attitudes, behaviours and practices in individuals with lipoedema towards dietary management and dietetic support
Background: Lipoedema is an incurable, chronic adipose tissue disorder which often goes unrecognised and misdiagnosed for overweight/obesity. Awareness and understanding of the condition is limited due to lack of clinical and epidemiological research. Diet plays an important role in the lives of those affected, with many individuals developing disordered eating patterns. Despite this, dietetic input is scarce. This study aimed to provide preliminary data around dietary practices adopted by individuals with lipoedema, their attitudes and behaviours towards eating and their individual experiences with dietetic services. Methods: An online questionnaire was conducted in partnership with Talk Lipoedema amongst individuals with lipoedema living in the UK. The questionnaire was developed using a combination of validated and non-validated tools. It was piloted amongst Talk Lipoedema’s committee members prior to data collection. Semi-quantitative and qualitative methods were used within this study. Data were analysed using non-parametric tests and thematic analysis. Results: 190 respondents were recruited. 95% have made attempts to control their body shape and/or size through dieting. More than 45 diets, 30 restricted food items/groups and 45 vitamins, minerals and supplements were reported to have been used. Shape and weight concern was prominent in respondents, driving the severity of disordered eating in this population 3.1 times greater than normative community values. 25% of respondents had seen a dietitian, 80.4% of which felt this was not beneficial. Three main themes emerged from consultation experiences: (lack of) knowledge, (lack of) individualised care and the importance of building relationships. Conclusions: Providing early dietetic input tailored for lipoedema may be a therapeutic strategy in reducing the rates of disordered eating and improving psychological well-being in individuals with lipoedema. For this to be achieved, knowledge and awareness of lipoedema must be improved across all health care professionals. This study provides findings which are useful for directing future research.