Getting patients to tell their stories: how much do they understand about their leg ulcer?

The commonest cause of a leg ulcer is longstanding disease in the veins of the leg (chronic venous disease, or CVD), usually present for many years before actual ulceration appears. In order to find out what patients understand about CVD, researchers in the Netherlands asked 11 patients with chronic venous ulcers to tell them their stories from their own point of view, right from the beginning. It was clear that understanding of CVD was poor. Some patients had incorrect assumptions, such as that stress caused their ulcer, or that the white spots on their legs due to CVD were the same as the ones on their arms due to vitiligo (a different condition). The significance of mobility and obesity, which are interlinked, was underappreciated. Although the patients frequently spoke about issues around mobility, reduced mobility for any reason (e.g. arthritis) was not linked directly to developing a venous ulcer by any of the patients. Some correct links made with leg ulceration included with diabetes, standing for long periods at work and, for one patient, being tall and having to sit with bent knees at work because the seats were too small. Overall, however, failure to understand the concept of CVD led to patients not understanding the need for elasticated compression with stockings or bandages, which is the linchpin of management. The authors classified their findings into four themes: the presence of other medical conditions, mobility, work and lifestyle, and understanding of CVD. They hope their findings will help in developing better strategies to prevent ulceration and in improving management. Linked Article:   Meulendijks et al. Br J Dermatol 2020; 183 :332–339.