Portuguese Recommendations for the management of Raynaud's phenomenon and digital ulcers in systemic sclerosis and other connective tissue diseases.

OBJECTIVE: To develop evidence-based recommendations for the non-pharmacological and pharmacological management of Raynaud's phenomenon (RP) and digital ulcers (DUs) in patients with systemic sclerosis and other immune-mediated connective tissue diseases (CTDs). METHODS: A task force comprising 21 rheumatologists, two surgeons (vascular and plastic), two nurses, and one patient representative was established. Following a systematic literature review performed to inform the recommendations, statements were formulated and discussed during two meetings (one online and one in-person). Levels of evidence, grades of recommendation (GoR), and level of agreement (LoA) were determined. RESULTS: Five overarching principles and 13 recommendations were developed. GoR ranged from A to D. The mean ± standard difference (SD) LoA with the overarching principles and recommendations ranged from 7.8±2.1 to 9.8±0.4. Briefly, the management of RP and DUs in patients with CTDs should be coordinated by a multidisciplinary team and based on shared decisions with patients. Nifedipine should be used as first-line therapy for RP and/or DUs. Sildenafil, tadalafil, and/or iloprost IV are second-line options for severe and/or refractory patients with RP and/or DUs. Sildenafil, tadalafil and/or Iloprost IV, should be prescribed for healing and prevention (also including bosentan) of DUs. In patients with RP and/or DUs, non-pharmacological interventions might be considered as add-ons, but there is limited quality and quantity of scientific evidence supporting their use. CONCLUSIONS: These recommendations will inform rheumatologists, specialist nurses, other healthcare professionals, and patients about a comprehensive and personalized management of RP and DUs. A research agenda was developed to address unmet needs, particularly for non-pharmacologic interventions.

2018 update of the EULAR recommendations for the role of the nurse in the management of chronic inflammatory arthritis.

To update the European League Against Rheumatism (EULAR) recommendations for the role of the nurse in the management of chronic inflammatory arthritis (CIA) using the most up to date evidence. The EULAR standardised operating procedures were followed. A task force of rheumatologists, health professionals and patients, representing 17 European countries updated the recommendations, based on a systematic literature review and expert consensus. Higher level of evidence and new insights into nursing care for patients with CIA were added to the recommendation. Level of agreement was obtained by email voting. The search identified 2609 records, of which 51 (41 papers, 10 abstracts), mostly on rheumatoid arthritis, were included. Based on consensus, the task force formulated three overarching principles and eight recommendations. One recommendation remained unchanged, six were reworded, two were merged and one was reformulated as an overarching principle. Two additional overarching principles were formulated. The overarching principles emphasise the nurse's role as part of a healthcare team, describe the importance of providing evidence-based care and endorse shared decision-making in the nursing consultation with the patient. The recommendations cover the contribution of rheumatology nursing in needs-based patient education, satisfaction with care, timely access to care, disease management, efficiency of care, psychosocial support and the promotion of self-management. The level of agreement among task force members was high (mean 9.7, range 9.6-10.0). The updated recommendations encompass three overarching principles and eight evidence-based and expert opinion-based recommendations for the role of the nurse in the management of CIA.

2019 EULAR recommendations for the generic core competences of health professionals in rheumatology.

BACKGROUND/OBJECTIVES: To maintain and optimise the quality of care provided by health professionals in rheumatology (HPRs), adequate educational offerings are needed. This task force (TF) aimed to develop evidence-based recommendations for the generic core competences of HPRs, with specific reference to nurses, physical therapists (PTs) and occupational therapists (OTs) to serve as a basis for their postgraduate education. METHODS: The EULAR standardised operating procedures for the development of recommendations were followed. A TF including rheumatologists, nurses, PTs, OTs, patient-representatives, an educationalist, methodologists and researchers from 12 countries met twice. In the first TF meeting, 13 research questions were defined to support a systematic literature review (SLR). In the second meeting, the SLR evidence was discussed and recommendations formulated. Subsequently, level of evidence and strength of recommendation were assigned and level of agreement (LoA) determined (0-10 rating scale). RESULTS: Three overarching principles were identified and 10 recommendations were developed for the generic core competences of HPRs. The SLR included 79 full-text papers, 20 of which addressed the competences, knowledge, skills, attitudes and/or educational needs of HPRs from multiple professions. The average LoA for each recommendation ranged from 9.42 to 9.79. Consensus was reached both on a research and educational agenda. CONCLUSION: Evidence and expert opinion informed a set of recommendations providing guidance on the generic core competences of HPRs. Implementation of these recommendations in the postgraduate education of HPRs at the international and national level is advised, considering variation in healthcare systems and professional roles.

Iloprost infusion through elastomeric pump for the outpatient treatment of severe Raynaud's phenomenon and digital ulcers - a single centre experience.

Raynaud's phenomenon (RP) and digital ulcers (DU) are the main clinical features of vasculopathy that occurs in several systemic rheumatic diseases. Intravenous iloprost is recommended for the treatment of severe RP and DU in patients with systemic sclerosis and portable devices for iloprost infusion have been recently designed, allowing outpatient treatment. This new alternative for drug administration not only avoids absenteeism, with the patient having the opportunity to continue his own family and work life, but also reduces the costs associated with hospitalization. We describe our protocol and report our experience with 12 patients, for a total of 25 infusions, who have received domiciliary iloprost through elastomeric pump. Patients could easily manage the device and the treatment outcomes were promising, with all patients having DU healing, without any special safety concerns.

Patients' satisfaction with the rheumatology day care unit.

BACKGROUND: Patients receiving biological therapies are regularly evaluated and monitored at rheumatology day care units (RDCU). Despite patients' satisfaction with the delivered care and the relationship between the patient and the multidisciplinary team being acknowledged as important aspects to ensure adherence to therapy, factors associated with them have not been investigated so far. OBJECTIVES: To evaluate patients' satisfaction with the functioning of the RDCU and to identify the factors associated with the level of satisfaction. METHODS: An anonymous questionnaire was administered to all patients with rheumatoid arthritis (RA) or spondyloarthritis treated with biological drugs and followed at the RDCU at Hospital Garcia de Orta, Almada, Portugal. Satisfaction was measured using a visual analogue scale (0-100, 0 meaning completely unsatisfied, 100 meaning completely satisfied). Further information was collected on socio-demographic variables, physical conditions of the RDCU, waiting time, satisfaction with the role of medical, nursing and administrative staff (satisfaction level with their friendliness, question answering, care delivery, privacy during consultation, clarity in the information given, which was then transformed into a composite score, 0-20). Factors associated with satisfaction were studied by univariable followed by multiple linear regression to adjust for potential confounders. RESULTS: In total, 150 patients were included in the study (mean age 50.6 ± 13.7 years, 64% female, 62% RA, mean disease duration 10.6 ± 6.1 years). The majority of patients attended the RDCU for more than three years and 57% received subcutaneous therapy. The mean level of satisfaction with the RDCU was 81.9 ± 17.9. Multivariable analysis showed that intravenous therapy (ß 6.13, 95% confidence interval - CI 0.71-11.55), physician score (ß 2.28, 95%CI 1.20-3.35) and increasing levels of satisfaction with the room temperature (ß 5.64, 95%CI 3.06-8.21) and waiting time (ß 25.53, 95%CI 8.17-42.89, for a very good vs non-acceptable waiting time) were positively associated with the level of satisfaction, while the nursing score was inversely associated. CONCLUSIONS: Patients were overall very satisfied with the functioning of the RDCU. Waiting time, satisfaction with the physician role, room temperature and intravenous therapy were the main factors positively associated with the level of satisfaction.