Exploration of Patient Characteristics and Quality of Life in Patients with Lipoedema Using a Survey.

INTRODUCTION: Lipoedema is a chronic disorder in which excessive fat distribution occurs predominantly from the waist down, resulting in a disproportion between the lower extremities and upper torso. Lipoedema is often not recognized, while patients experience pain and easy bruising. As a long-term condition, lipoedema has a massive effect on patients' lives and mental health. The aim of this study is to explore patient characteristics, quality of life, physical complaints and comorbidities in patients with lipoedema. METHODS: A survey was conducted by email amongst lipoedema patients, consisting of informed consent and multiple questionnaires. The questionnaires included general patient characteristics, physical complaints, comorbidities, RAND-36 and EQ-5D-3L. Participants who responded to a message on the Dutch Lipoedema Association website were recruited. RESULTS: All lipoedema patients experience physical complaints, with pain (88.3 %) and easy bruising (85.9 %) as primary complaints. The diagnosis was mostly made by a dermatologist after visiting a mean of 2.8 doctors. Furthermore, mean time from onset until diagnosis was 18 years. Quality of life (59.3) was significantly lower than the Dutch female average (74.9; p < 0.001). Additionally, patients with comorbidities had significant lower quality of life (RAND 54.7, p < 0.001). CONCLUSIONS: Lipoedema patients often have severe complaints and experience lower quality of life regarding physical, emotional and social functioning. Additionally, comorbidities have a large impact on quality of life.

[A girl with bilateral periorbital edema]. / Een meisje met bilateraal periorbitaal oedeem.

An 11-year-old girl was seen with painless, bilateral periorbital edema, that had appeared a week before presentation. Additional symptoms included fever, headache and malaise. Serological tests performed three days later showed an active Epstein-Barr virus infection, which provided the diagnosis 'Pfeiffer's disease'. Bilateral periorbital edema can be the presenting manifestation of Epstein-Barr virus infection and should therefore be included in its differential diagnosis.