To Örebro University

OBJECTIVE: To develop evidence-based recommendations for the non-pharmacological management of systemic lupus erythematosus (SLE) and systemic sclerosis (SSc).

METHODS: A task force comprising 7 rheumatologists, 15 other healthcare professionals and 3 patients was established. Following a systematic literature review performed to inform the recommendations, statements were formulated, discussed during online meetings and graded based on risk of bias assessment, level of evidence (LoE) and strength of recommendation (SoR; scale A-D, A comprising consistent LoE 1 studies, D comprising LoE 4 or inconsistent studies), following the European Alliance of Associations for Rheumatology standard operating procedure. Level of agreement (LoA; scale 0-10, 0 denoting complete disagreement, 10 denoting complete agreement) was determined for each statement through online voting.

RESULTS: Four overarching principles and 12 recommendations were developed. These concerned common and disease-specific aspects of non-pharmacological management. SoR ranged from A to D. The mean LoA with the overarching principles and recommendations ranged from 8.4 to 9.7. Briefly, non-pharmacological management of SLE and SSc should be tailored, person-centred and participatory. It is not intended to preclude but rather complement pharmacotherapy. Patients should be offered education and support for physical exercise, smoking cessation and avoidance of cold exposure. Photoprotection and psychosocial interventions are important for SLE patients, while mouth and hand exercises are important in SSc.

CONCLUSIONS: The recommendations will guide healthcare professionals and patients towards a holistic and personalised management of SLE and SSc. Research and educational agendas were developed to address needs towards a higher evidence level, enhancement of clinician-patient communication and improved outcomes.

BACKGROUND: Pain is one of the most frequently reported symptoms and often one of the first subjective symptoms in patients with systemic lupus erythematosus (SLE). A previous study indicated that most patients with SLE reported low levels of SLE-related pain. However, a subgroup of patients reported high levels of pain ≥40 mm (0-100 mm) and had a substantial symptom burden in terms of fatigue, anxiety, depression, and reduced health-related quality of life. Thus, there is a need to elucidate the implications of high levels of pain in everyday life.

AIM: This study explored the patient's experiences and implications of SLE-related pain in daily life and the support requested from healthcare providers.

METHOD: A total of 20 patients, previously reported high levels of SLE-related pain intensity measuring ≥40 mm (0-100 mm) in a research context at one or two occasions participated in individual semi-structured interviews, which were transcribed and analysed with content analysis.

RESULTS: The interviews revealed four main categories and 13 generic categories. SLE-associated pain was described by its multifaceted nature, exhibiting longstanding, unpredictable, migrating, and various physical sensations. The pain entailed multidimensional consequences, restricting everyday life by interfering with roles and relationships and causing various emotions, including existential thoughts. The informants used comprehensive strategies to deal with the pain, including their inner resources, support from family and significant others, and pharmaceuticals and relieving treatments. They expressed the need for security and acknowledgement, which involved individualized support and accessibility of healthcare.

CONCLUSION: This study provides comprehensive insights into the nature and multifaceted impact of SLE-related pain in different dimensions of the informants' daily lives. Except for medications the informants used several strategies, including their inner resources and support from family and others, to manage the pain. Support requested from healthcare providers by the informants included understanding, compassion, individualized care and accessibility.

OBJECTIVES: This scoping review aimed to explore and synthesize current literature to advance the understanding of how to design clinical reasoning (CR) curricula for students in health professions education.

METHODS: Arksey and O'Malley's 6-stage framework was applied. Peer-reviewed articles were searched in PubMed, Web of Science, CINAHL, and manual searches, resulting in the identification of 2932 studies.

RESULTS: Twenty-six articles were included on CR in medical, nursing, physical therapy, occupational therapy, midwifery, dentistry, and speech language therapy education. The results describe: features of CR curriculum design; CR theories, models, and frameworks that inform curricula; and teaching content, methods, and assessments that inform CR curricula.

CONCLUSIONS: Several CR theories, teaching, and assessment methods are integrated into CR curricula, reflecting the multidimensionality of CR among professions. Specific CR elements are addressed in several curricula; however, no all-encompassing CR curriculum design has been identified. These findings offer useful insights for educators into how CR can be taught and assessed, but they also suggest the need for further guidance on educational strategies and assessments while learners progress through an educational program.

OBJECTIVE: The aim was to describe how the patient perspective is captured in clinical research on ANCA-associated vasculitis (AAV).

METHODS: This integrative review included 2149 publications found in four different databases and manual searches. After screening, 156 articles remained. All articles were sorted and categorized, and 77 original articles were analysed further.

RESULTS: The patient perspective was captured with patient-reported outcome measures (PROMs), single-item questionnaires, project-specific questionnaires and interviews. The most common aspects measured were health-related quality of life, anxiety and depression, and fatigue, and the least common were lifestyle habits, relationships and self-management.

CONCLUSION: The patient perspective was captured predominantly with generic PROMs and occasionally with a qualitative approach. AVV is a lifelong disease, and the results from this review show that not all aspects of importance to patients are covered with the PROMs used in research. Future studies should include the areas that are the most important for patients.

In this explorative study, we investigated if an adjunctive treatment with one single dose of the monoclonal antibody rituximab would improve symptoms and function in treatment-resistant patients with schizophrenia spectrum disorder (SSD, n = 9) or obsessive-compulsive disorder (OCD, n = 10), based on the inflammatory hypothesis for mental disorders. Patients were followed for one year. Disability was measured with the Personal and Social Performance score (PSP). At baseline, the mean PANSS score in the SSD group was 99 ± 32 and the mean Y-BOCS score in the OCD group was 27.5 ± 7. Mean PSP scores were 32 ± 10.2 and 42.5 ± 9.9 in the SSD and OCD groups, respectively. Seven had Paediatric Acute-Onset Neuropsychiatric Syndrome (PANS) in retrospect, and 3 SSD patients had schizo-obsessive subtype. 4/8 SSD patients showed a ≥40% reduction in PANSS at endpoint I week 20, however, 7/9 were similarly improved already at week 12. Among the OCD patients, 2/10 showed a ≥35% reduction in Y-BOCS at week 20. Disability was significantly improved only in the SSD group. The percentual decrease of PANSS scores in SSD patients was associated with the increase in immunoglobulin levels week 20 (n = 8: IgG r = 0.85, p = .007; IgA r = 0.79, p = .019; IgM r = 0.73, p = .038). Rituximab was generally well tolerated in these patients. Self-rated improvements since baseline were reported for psychic (p = .021), neurological (p = .059), and autonomic (p < .001) side effects (UKU-SERS-Pat side-effect scale). Anxiety was commonly reported by OCD patients, while an initial increase in psychotic symptoms was seen in a few SSD patients. An RCT is underway to evaluate rituximab in SSD.

Objectives: Knowledge and health literacy enable patients to monitor symptoms and disease impact. Educational needs have previously been explored in rheumatology, but scarcely for patients with ANCA-associated vasculitis (AAV). The aim of the study was to assess the educational needs among patients with AAV using the educational needs assessment tool (ENAT).

Methods: This was a cross-sectional observational study including adults with AAV. Educational needs were captured by ENAT. Total ENAT (0-117 points, with higher numbers indicating higher educational need) and the seven domains (managing pain, movement, feelings, disease process, treatment, self-management and support systems) were explored regarding sex, age, education, diagnosis, disease duration and disease activity. To compare domains, a percentage response (0-100%) was calculated.

Results: One hundred and seventy-eight individuals (50% men; 34% with disease duration ≤2 years) were included. The total ENAT mean was 66.5 (s.d. 26.6; 57%), with domains as follows: disease process, 78%; self-management, 69%; treatments, 64%; feelings, 56%; managing pain, 48%; support systems, 47%; and movement, 41%. Higher educational needs were found among women in the domains movement, feelings and disease process and in total ENAT (all P < 0.04) compared with men. Higher educational needs were also seen in patients with disease duration ≤2 years regarding disease process, self-management and support systems and in total ENAT compared with patients with longer disease duration (all P < 0.03).

Conclusion: This study revealed great educational needs among AAV patients. Some groups expressed higher needs (women and those with shorter disease duration). Increased education for patients with AAV might lead to improved self-care and treatment adherence.

OBJECTIVE: Although physical activity (PA) is an evidence-based intervention that reduces disease-related symptoms and comorbidity in rheumatoid arthritis (RA), PA's effect on self-reported function and Quality of Life (QoL) has not been analyzed. This study synthesizes the evidence for the effectiveness of PA on QoL and self-reported function in adults with RA, spondyloarthritis (SpA), and psoriatic arthritis (PsA).

METHODS: The databases PubMed, Embase, CINAHL, and Cochrane Central Register of Controlled Trials (CENTRAL) were searched to identify relevant randomized controlled trials (RCTs). Screening, risk of bias assessment (using RoB 2.0 tool), and data extraction were independently performed by two or more of the authors. The meta-analyses were conducted with a random-effects model.

RESULTS: The systematic review included 55 RCTs and the meta-analysis included 37 RCTs. In 55 studies included, 76% investigated RA, 20% investigated SpA, and 4% investigated PsA. In RA effects were found on QoL and function compared to inactive controls, effects not sustained in comparison to active controls. In SpA the effects of PA on QoL were in favor of the control group. Effects on function were found compared to inactive controls and sustained in fatigue and pain when compared to active controls. In PsA no effects on QoL were found but on function compared to inactive controls. The effect size was below 0.30 in the majority of the comparisons.

CONCLUSION: PA may improve QoL and self-reported function in RA, SpA, and PsA. However, larger trials are needed, especially in SpA and PsA.