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Objective: Translating the highly technical medical jargon of SLE into understandable concepts for patients, their families and individuals without expertise in SLE is a serious challenge. To facilitate communication and enable self-management in SLE, we aimed to create an innovative visual tool, the Purple Butterfly. Methods: We selected clinically representative criteria for SLE and transposed them as graphical features in an attractive and meaningful visual. We developed a script in R programming language that automatically transposes clinical data into this visualization. We asked SLE patients from a local cohort about the relevance, usefulness and acceptability of this visual tool in an online pilot survey. Results: The innovative Purple Butterfly features 11 key clinical criteria: age; sex; organ damage; disease activity; comorbidities; use of antimalarials, prednisone, immunosuppressants and biologics; and patient-reported physical and mental health-related quality of life. Each Purple Butterfly provides the health portrait of one SLE patient at one medical visit, and the automatic compilation of the butterflies can illustrate a patient's clinical journey over time. All survey participants agreed that they would like to use the Purple Butterfly to visualize the course of their SLE over time, and 9 of 10 agreed it should be used during their medical consultations. Conclusion: The Purple Butterfly nurtures effective doctor-patient communication by providing concise visual summaries of lupus patients' health conditions. We believe the Purple Butterfly has the potential to empower patients to take charge of their condition, enhance healthcare coordination and raise awareness about SLE.
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Objectives: This study aims to determine whether patients with active rheumatoid arthritis (RA), either starting on or changing biological or targeted synthetic disease-modifying antirheumatic drugs (DMARDs), demonstrate better self-management safety skills three months after receiving a multidisciplinary educational intervention compared to patients receiving usual care. Patients and methods: Between October 2015 and October 2018 , this open-label, randomized-controlled trial included a total of 107 RA patients (27 males, 80 females; mean age: 60.2±10.4 years; range, 54 to 71 years) who were on treatment or in whom treatment was changed with a biological or targeted synthetic DMARD. The patients were randomized into two groups: Group 1 (n=57) received additional intervention with educational DVD and one teleconference session and Group 2 (n=55) received usual care and were offered the intervention at three months. All patients underwent a final visit at six months. At each visit, the patients completed the BioSecure questionnaire measuring the self-care safety skills, a behavioral intention questionnaire, and the Beliefs about Medicines Questionnaire (BMQ). Results: No significant difference was observed in the Biosecure score at three months between the two groups (p=0.08). After pooling the first three-month data in Group 1 and the last three-month data in Group 2, the mean score of the BioSecure questionnaire increased to 7.10±0.92 in the group receiving educational intervention (p<0.0001). This increase was maintained at six months in Group 2 (p=0.88). The rate of appropriate behavioral intention increased over time (76% at baseline and 85% at six months for both groups). There was no significant change in the BMQ (p=0.44 to 0.84). Conclusion: The development of an educational DVD followed by a teleconference seem to improve self-care safety skills of the patients in practical situations.
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BACKGROUND: Mitochondria are intracellular organelles of bacterial origin capable of stimulating the immune system when released into the extracellular milieu. We previously reported the expression of anti-mitochondrial antibodies (AMA) targeting whole organelles (AwMA), mitochondrial DNA (AmtDNA) or mitochondrial RNA (AmtRNA) in patients with systemic lupus erythematosus (SLE). Antiphospholipid syndrome (APS) is an autoimmune condition that may be independent of, or associated with, other diseases, usually SLE. This study aimed to detect AMA in patients with APS and to explore the association with clinical features of APS. METHODS: AwMA-, AmtDNA- and AmtRNA-IgG and -IgM were detected in a pilot study (healthy controls n = 30 and APS patients n = 24) by direct ELISA, and their levels were associated with demographic and disease characteristics. RESULTS: AmtDNA-IgM and AmtRNA-IgG and IgM were elevated in APS compared to healthy controls (p = 0.009, p = 0.0005 and p = 0.01, respectively). AwMA-IgG were increased in patients positive for lupus anticoagulant (median ± interquartile range = 0.36 ± 0.31 vs. 0.14 ± 0.08, p = 0.008), and optical density values for AwMA-IgM were correlated with titres of IgM against cardiolipin (rs = 0.51, p = 0.01). An increment of 0.1 unit of AmtDNA-IgM levels was associated with reduced prior reporting of arterial events (odds ratio = 0.86; 95% confidence interval 0.74-1.00; p = 0.047). CONCLUSION: Our pilot study suggests that AMA are represented within the autoantibody repertoire in APS and may display different associations with the clinical manifestations of the disease. Further studies should focus on reproducing these preliminary results by following AMA levels through time in larger prospective cohorts.
