91快活林

We set out to explore the symptoms of foot involvement among people with Lupus from the patients’ perspective

Methods

A self-administered postal questionnaire was developed in consultation with people with Lupus and initially sent to members of a patient support group (n=18). The 40-item questionnaire used validated manikins, quantitative and qualitative approaches to enquire about the nature and extent of foot complaints, their management and how this affected self-reported quality of life.

A total of 12 responses (66 per cent) were received; all participants were female with a mean age of 53 (SD 11) and an average positive diagnosis of Lupus of 10 years (SD11.2). All respondents reported foot pain caused by their Lupus with 32 per cent saying their feet were constantly painful. All parts of the feet were affected, with toes and hind foot most troublesome. A third reported foot pain stopped them sleeping and 45 per cent reported their feet were always cold. For 60 per cent foot pain negatively affected them emotionally, and overall for 69 per cent foot pain generally adversely affected their lives. Only 13 per cent reported social or family activities were never impacted by foot complaints. Respondents reported foot pain to be frustrating and depressing, primarily because it prevented daily activities leading to social exclusion: yet only a fifth were prescribed foot insoles/orthoses and none had therapeutic footwear.

This preliminary work appears to be the first of its type to characterise foot complaints in Lupus and indicates symptoms in the feet in Lupus are common, severe and under-reported: typically having a considerable negative impact on patients’ wellbeing. The group continues to collect data and hope to add clinical and serological correlations.