Working through the pain… and getting on with it — some patients’ experiences of living with Lupus-related foot problems

Background: Along with its skin manifestations, SLE can present witha variety of musculoskeletal signs and symptoms and vascularproblems that can affect the feet. Furthermore, there is the potentialfor reduced tissue viability, leading to thinning of the skin and/or callusformation. Further, systemic resistance to viral, bacterial and fungalinfections may be reduced and, together with poor tissue viability,create the opportunity for these infections to proliferate in the feet. Arecent survey by the same authors (unpublished) has shown a highprevalence of these infections, with many experiencing the impact ofvascular and musculoskeletal problems. To date there is no researchthat has explored the impact of foot problems on people’s lives.Methods: Following ethical approval, 12 participants who fulfilled theinclusion criteria were recruited: diagnosed with SLE (ACR diagnosis),current and/or past experience of foot/lower limb problems and age�18 years. Consent was obtained and then conversational-styleinterviews were carried out with an interpretivistic phenomenologicalapproach. The interviews were digitally recorded and complementedby field notes. An opening question was used for all participants: ‘Tellme about your experiences of having foot problems?’ If necessary,further trigger questions were used in order to maintain the conversationand the focus on foot problems. Data were transcribed verbatimand analysed using a thematic framework approach. The transcriptswere verified by the participants and were analysed by a secondresearcher in order to add to the credibility of the analyses.Results: The data was organized into seven themes: Foot problemsand symptoms—what they are and the feeling associated with them;Experiences of foot problems being diagnosed; Impact of footproblems on activities; Treatment of foot symptoms/problems;Perceived obstacles to professional foot care; Unanswered questionsabout feet and foot care; and Recognition of the need for professionalfoot care and foot care advice. These people experienced a widevariety of foot problems that impact significantly on activities. Somereported working through the pain in order to achieve visible normalitywhile experiencing the negative emotions of anger, frustration andanxiety. Although some had experienced professional foot care, therewere obstacles to the foot problems being diagnosed, resulting inmany unanswered questions and some inappropriate selfmanagement.Conclusion: Despite reporting foot pain, negative emotions andactivity restrictions related to their foot symptoms, people with SLEtend to get on with it and self-treat rather than seeking professionalfoot care. The lack of focus on the feet in the medical consultation iscaused by the participants’ belief that it is not the consultant’s role.There is a clear need for foot assessments to be included in themedical consultation and for professional foot care to be provided