Lipedema in Sweden – “The LISE-study”: Quality of life and body image in women with lipedema compared to healthy controls and women with cancer

BACKGROUND: Women with lipedema have an abnormal accumulation of adipose tissue that leads to pain and reduced quality of life (QoL). The impact of lipedema on body image and QoL remains largely unknown. The aim of this study is to explore Health-Related QoL (HR-QoL) and body image in women with lipedema and compare it to healthy women without lipedema as well as women with advanced cancer. METHODS: This comparative study included women with lipedema (n = 104), healthy women without lipedema (healthy controls) (n = 42), and an exploratory group of women with advanced cancer (n = 44). HR-QoL was assessed using RAND-36, body image concern was evaluated with the Body Shape Questionnaire (BSQ), and symptoms were assessed with Edmonton Symptom Assessment System (ESAS). RESULTS: In total, 190 women were included. Women with lipedema had significantly lower HR-QoL compared to healthy women without lipedema across all eight dimensions (p < 0.001). Women with lipedema had HR-QoL scores comparable to those of women with advanced cancer in four dimensions: physical functioning, bodily pain, and emotional problems. In the general health dimension, women with lipedema had even lower scores than women with advanced cancer (p < 0.05). Body image concerns were significantly greater in the lipedema group than in healthy controls (p = 0.001). Women with lipedema experienced significantly more symptoms than healthy controls, including more pain, fatigue, depression, anxiety, loss of appetite, dyspnea and reduced QoL (<0.001 for all). CONCLUSION: Women with lipedema had as low HR-QoL as women with advanced cancer in several dimensions, significant body image concerns and high symptom burden. These findings underscore the need to develop targeted health care initiatives for these patients.