ObjectiveTo achieve consensus on a definition of remission in SLE (DORIS).BackgroundRemission is the stated goal for both patient and caregiver, but consensus on a definition of remission has been lacking. Previously, an international task force consisting of patient representatives and medical specialists published a framework for such a definition, without reaching a final recommendation.MethodsSeveral systematic literature reviews were performed and specific research questions examined in suitably chosen data sets. The findings were discussed, reformulated as recommendations and voted on.ResultsBased on data from the literature and several SLE-specific data sets, a set of recommendations was endorsed. Ultimately, the DORIS Task Force recommended a single definition of remission in SLE, based on clinical systemic lupus erythematosus disease activitiy index (SLEDAI)=0, Evaluator’s Global Assessment <0.5 (0–3), prednisolone 5 mg/day or less, and stable antimalarials, immunosuppressives, and biologics.ConclusionThe 2021 DORIS definition of remission in SLE is recommended for use in clinical care, education, and research including clinical trials and observational studies.
Health-related quality-of-life (HRQoL) has been studied extensively in human medicine. There is currently no standard HRQoL evaluation for veterinary oncology patients. The aim of this study was to assess the practicality, usefulness and robustness, from a pet owner and clinician perspective, of a questionnaire for the assessment of HRQoL in canine and feline cancer patients. A HRQoL assessment entitled 'Cancer Treatment Form' and two questionnaires entitled 'Owner Minitest' and 'Clinician Minitest' were designed. The first and second were completed by owners of patients presenting to a veterinary oncology referral service and the third by attending clinicians. The 'Cancer Treatment Form' was well received by owners and clinicians and provided a valuable assessment of HRQoL with 98% (82/84) of owners reporting an accurate reflection of their pet's quality-of-life. Following this, minor improvements to the form could be suggested prior to regular use in evaluation of clinical oncology patients.
Patient engagement is recognized as a crucial component of high-quality healthcare services. Among rheumatic diseases, systemic lupus erythematosus (SLE) appears particularly challenging for the engagement of patients in their own care. According to the patient health engagement (PHE) model, patient engagement is a dynamic phenomenon that proceeds through four experiential positions (blackout, arousal, adhesion and eudaimonic project). The aim of the present study was to describe the engagement process from the point of view and the experiences of SLE patients. Ten in-depth interviews and four focus groups were conducted with an international sample of SLE patients from different European countries. Transcripts were analysed through thematic content analysis. Findings showed that a fully engaged patient results from reframing emotional, cognitive and behavioural dimensions. The advances along the process depends on how the patient succeeds in each position. In conclusion, PHE represents an appropriate model by which to understand the engagement process of SLE patients. In order to meet patients' needs, healthcare providers and patient support groups should consider the specific position of SLE patients, providing adequate and tailored support.
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