Patients’ experiences of lupus related foot problems : a qualitative investigation

Background: Systemic lupus erythematosus (SLE) can present with a variety of symptoms. Previous research has shown there is a high prevalence of lower limb and foot problems in patients with SLE associated with the musculoskeletal, vascular and neurological changes. Furthermore, there is a high prevalence of infections affecting the feet and a range of common skin and nail problems. However, it is not known how these foot problems impact upon people’s lives. Therefore, we aimed to explore this using a qualitative approach. Method: Following ethical approval, 12 participants were recruited who had a diagnosis of SLE, current and/or past experience of foot problems and were over 18 years in age. Following consent, interviews were carried out with an interpretivist phenomenological approach to both data collection and analysis. Results: Seven themes provide insight into: foot problems and symptoms; the impact of these foot problems and symptoms on activities; disclosure and diagnosis of foot problems; treatment of foot problems and symptoms; perceived barriers to professional foot care; unanswered questions about feet and foot care; and identification of the need for professional foot care and foot care advice. Conclusion: These participants tend to “self-treat” rather than disclose that they may need professional foot care. A lack of focus upon foot health within a medical consultation is attributed to the participant’s belief that it is not within the doctor’s role, even though it is noted to contribute to reduced daily activity. There is a need for feet to be included as a part of patient monitoring and for foot health management to be made accessible for people with SLE

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 with a variety of musculoskeletal signs and symptoms and vascular problems that can affect the feet. Furthermore, there is the potential for reduced tissue viability, leading to thinning of the skin and/or callus formation. Further, systemic resistance to viral, bacterial and fungal infections may be reduced and, together with poor tissue viability, create the opportunity for these infections to proliferate in the feet. A recent survey by the same authors (unpublished) has shown a high prevalence of these infections, with many experiencing the impact of vascular and musculoskeletal problems. To date there is no research that has explored the impact of foot problems on people’s lives. Methods: Following ethical approval, 12 participants who fulfilled the inclusion 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-style interviews were carried out with an interpretivistic phenomenological approach. The interviews were digitally recorded and complemented by field notes. An opening question was used for all participants: ‘Tell me about your experiences of having foot problems?’ If necessary, further trigger questions were used in order to maintain the conversation and the focus on foot problems. Data were transcribed verbatim and analysed using a thematic framework approach. The transcripts were verified by the participants and were analysed by a second researcher in order to add to the credibility of the analyses. Results: The data was organized into seven themes: Foot problems and symptoms—what they are and the feeling associated with them; Experiences of foot problems being diagnosed; Impact of foot problems on activities; Treatment of foot symptoms/problems; Perceived obstacles to professional foot care; Unanswered questions about feet and foot care; and Recognition of the need for professional foot care and foot care advice. These people experienced a wide variety of foot problems that impact significantly on activities. Some reported working through the pain in order to achieve visible normality while experiencing the negative emotions of anger, frustration and anxiety. Although some had experienced professional foot care, there were obstacles to the foot problems being diagnosed, resulting in many unanswered questions and some inappropriate selfmanagement. Conclusion: Despite reporting foot pain, negative emotions and activity restrictions related to their foot symptoms, people with SLE tend to get on with it and self-treat rather than seeking professional foot care. The lack of focus on the feet in the medical consultation is caused by the participants’ belief that it is not the consultant’s role. There is a clear need for foot assessments to be included in the medical consultation and for professional foot care to be provided

Results of a national foot health survey of patients with Systemic Lupus Erythematosus

Background: SLE can affect many tissues throughout the body. Anecdotally, it is suggested that people with SLE experience a range of complications in the foot and lower limb, including vascular impairment (e.g. RP), neurological impairment, poor tissue viability (e.g. ulceration), infection and foot pain. However, to date, the precise prevalence of foot complications experienced by people with SLE has not been described. The aim of this survey was to determine self-reported foot and lower limb complications experienced by people with SLE. Methods: The survey was developed via patient and practitioner focus groups. A consensus approach was used to generate items and to formulate themes, categories, question format and survey structure. The survey was checked for face and content validity prior to cognitive debriefing to ensure usability and understanding. Consecutive patients with a confirmed diagnosis of SLE meeting the inclusion criteria attending any of seven UK clinical sites or members of Lupus UK were invited to participate. Ethical approval and participant informed consent was obtained. Results: A total of 182 survey responses were completed. For all responders, the most frequent age range was 40–49 years, mean BMI was 27 (S.D. 7) and mean disease duration was 15 years (S.D. 10). A number of vascular complications were reported, including intermittent claudication [n ¼ 100 (55%)], RP [n ¼ 94 (52%)] and splinter haemorrhage [n ¼ 39 (21%)]. Overall, 164 patients (90%) reported experiencing symptoms of peripheral vascular complications. Symptoms of peripheral neuropathy were reported by 30 patients (16%), while a fall as a consequence of neuropathic symptoms was reported by 45 patients (25%). A range of skin and nail complications were reported, including callus or corns [n ¼ 130 (71%)], onychocryptosis [n ¼ 69 (38%)], rashes or blistering [n ¼ 62 (34%)] and ulceration [n ¼ 45 (25%)]. A high prevalence of infection was reported; a history of viral infection (verrucae pedis) or fungal infection (tinea pedis) was reported by 77 patients (42%), bacterial infection by 28 patients (15%) and onychomycosis by 65 patients (36%). Overall, 170 patients (93%) reported having experienced some form of tissue viability complication. Foot joint pain, stiffness and swelling was reported by 145 (80%), 136 (75%) and 94 (52%) patients, respectively. Foot-related walking impairment was reported by 67 patients (37%). Only 60 patients (33%) reported having ever been asked about their feet by a medical professional. Seventy-seven patients (42%) reported that they would benefit from the provision of general foot health care advice. Conclusion: A large number of people with SLE report vascular complications, impaired tissue viability, musculoskeletal problems and foot pain, as well as a range of infections and conditions of the skin and nails. Despite this, foot health assessment by professionals was infrequent. These results highlight the need to undertake clinical studies investigating lower limb pathologies in SLE

P193 USEFUL I: musculoskeletal ultrasound to identify patients with lupus arthritis with better response to therapy

Background In SLE, musculoskeletal manifestations have an impact on quality of life, disability and clinical trial outcomes, but are harder to assess than in RA and PsA. We previously showed that joint swelling lacks sensitivity, specificity and responsiveness compared to ultrasound. USEFUL was a multicentre longitudinal study to determine clinical features predicting ultrasound synovitis and whether patients with ultrasound synovitis respond better to therapy. Methods SLE patients were recruited if the referring physician deemed they had inflammatory pain warranting treatment. Swollen joints were not required. At baseline, physicians recorded the features that led them to diagnose inflammatory pain and features of concurrent fibromyalgia and osteoarthritis. Stable doses of prednisolone (≤5 mg/day), antimalarials or immunosuppressants were allowed. Participants received depomedrone 120 mg IM then were assessed at 0, 2 and 6 weeks for 66/68 swollen and tender joint counts, BILAG-2004, SLEDAI-2K, physician global and MSK-VAS, inflammatory markers, patient pain and disease activity-VAS, HAQ-DI, LupusQoL, ultrasound of hands and wrists (blinded to patient and clinical assessor). An internal pilot determined the primary endpoint: EMS-VAS at 2 weeks (adjusted for baseline) between patients with ultrasound-synovitis vs. normal ultrasound at baseline. Sensitivity analyses adjusted for prednisolone and immunosuppressants. Results 122/133 patients recruited completed all visits. There was significant disagreement between clinical examination and ultrasound. 78/133 had ultrasound synovitis; 68% of these had ≥1 swollen joint. Of 66/133 patients with ≥ 1 swollen joint, 20% had normal ultrasound. Ultrasound-synovitis was more likely with joint swelling, a symmetrical small joint distribution and active serology. Physician-determined EMS, other lupus features or prior response to therapy were not associated. Fibromyalgia or osteoarthritis did not reduce the probability of ultrasound synovitis. In the full analysis set (n=133) there was no difference in EMS VAS at 2 weeks according to ultrasound synovial status as baseline (difference -8 mm, 95% CI -19, 4 mm, p=0.178). 32 patients had fibromyalgia. After excluding these patients, we found a statistically and clinically significantly better clinical response to depomedrone in patients with ultrasound-synovitis at baseline (baseline-adjusted EMS VAS at 2 weeks -12 mm, 95% CI -24, 0 mm, p=0.049). This difference was greater in the treatment-adjusted sensitivity analysis (-12.8 (95% CI -22, -3 mm), p=0.007) and the per-protocol-adjusted sensitivity analysis (-14.8 mm (95% CI -20.8, -8.8 mm), p<0.001). Patient with ultrasound synovitis had higher rates of improvement in the musculoskeletal BILAG-2004 (56% vs. 26%, p=0.09) and SLEDAI-2K (37% vs. 15%, p=0.03). Conclusions In lupus arthritis distribution and serology, but not other features, help identify ultrasound-synovitis. Ultrasound-synovitis was independent of features of fibromyalgia, but fibromyalgia confounded assessment of response. Excluding fibromyalgia, response to therapy was better in patients with abnormal ultrasound compared to normal. Ultrasound should be used to select patients for therapy and clinical trials, especially when there are inflammatory symptoms without swollen joints

Deficiency of FLCN in Mouse Kidney Led to Development of Polycystic Kidneys and Renal Neoplasia

The Birt–Hogg–Dubé (BHD) disease is a genetic cancer syndrome. The responsible gene, BHD, has been identified by positional cloning and thought to be a novel tumor suppressor gene. BHD mutations cause many types of diseases including renal cell carcinomas, fibrofolliculomas, spontaneous pneumothorax, lung cysts, and colonic polyps/cancers. By combining Gateway Technology with the Ksp-Cre gene knockout system, we have developed a kidney-specific BHD knockout mouse model. BHDflox/flox/Ksp-Cre mice developed enlarged kidneys characterized by polycystic kidneys, hyperplasia, and cystic renal cell carcinoma. The affected BHDflox/flox/Ksp-Cre mice died of renal failure at approximate three weeks of age, having blood urea nitrogen levels over tenfold higher than those of BHD flox/+/Ksp-Cre and wild-type littermate controls. We further demonstrated that these phenotypes were caused by inactivation of BHD and subsequent activation of the mTOR pathway. Application of rapamycin, which inhibits mTOR activity, to the affected mice led to extended survival and inhibited further progression of cystogenesis. These results provide a correlation of kidney-targeted gene inactivation with renal carcinoma, and they suggest that the BHD product FLCN, functioning as a cyst and tumor suppressor, like other hamartoma syndrome–related proteins such as PTEN, LKB1, and TSC1/2, is a component of the mTOR pathway, constituting a novel FLCN-mTOR signaling branch that regulates cell growth/proliferation

Learning environments research in English classrooms

Although learning environments research has thrived for decades in many countries and school subjects, English classroom environment research is still in its infancy. This article paves the way for expanding research on English classroom environments by (1) reviewing the limited past research in English classrooms and (2) reporting the first study of English learning environments in Singaporean primary schools. For a sample of 441 grade 6 students, past research in other subjects was replicated in that a modified version of the What Is Happening In this Class? questionnaire was cross-validated, classroom environment was found to vary with the determinants of student sex and ethnicity, and associations emerged between students’ attitudes and the nature of the classroom environment