BACKGROUND: About half of all children with rheumatic diseases need continuous medical care during adolescence and adulthood. A good transition into adult rheumatology is essential. Guidelines for a structured transition process have therefore been recommended by the European League Against Rheumatism (EULAR) and the Paediatric Rheumatology European Society (PReS). However, implementation of these guidelines requires resources often not available in a busy clinical practice. AIMS: To assess the current practice of transitional care in Switzerland in relation to EULAR/PReS recommendations and to describe gaps and challenges in following the recommendations. METHODS: All paediatric Swiss rheumatology centres and their collaborating adult centres offering a transition service to adult care were invited to participate in this survey. The responsible paediatric and adult rheumatologist of each centre was interviewed separately using a structured manual addressing the EULAR/PReS transitional care recommendations. RESULTS: All 10 paediatric and 9 out of 10 adult rheumatologists agreed to participate. Centres varied in the number of patients in transition, from n = 0 to n = 111. The following EULAR/PReS recommendations were implemented and applied in most centres: continuity in the healthcare team, consultations focused on adolescents and young adults, joint consultations between the paediatric and adult rheumatologist, and access to the EULAR website. Only rarely did a centre have a written transition policy or evaluate their transitional care programme. The vast majority of the interviewees had no specific training in adolescent health. Most centres rated their transitional care performance as very good. CONCLUSION: Transition in Switzerland is not uniform and consequently the implementation of the EULAR/PReS recommendations is variable in Swiss rheumatology centres. Skills of healthcare professionals, continuity between clinical settings, size of the centres, and hospital focus on the needs of adolescents and young adults may represent key predictors of successful transitional care for patients with chronic rheumatic diseases. Future studies should examine these variables.
Abstract. Background: COVID-19 has led to a change in care for patients with chronic conditions, involving a transfer of drug administration from an outpatient to a community setting. Aim: To investigate patient preferences for treatment settings in the light of the current pandemic. Methods: Patients, who prior to the pandemic had attended two different outpatient clinics in a university hospital for their infusions or injections, were interviewed by telephone. The semi-structured interviews were analyzed using qualitative and quantitative methods. Results: Out of 49 patients with either anti-inflammatory or immunoglobulin treatments (response rate: 83 %), 24 (49.0 %) switched from subcutaneous (sc) injections in the hospital to the community setting, 18 (36.7 %) from intravenous infusions (iv) in the hospital to sc administration at home and 7 (14.3 %) moved to iv at home. During the pandemic 38 (80.9 %) wanted to continue their treatment at home, but after the pandemic 22 (46.8 %) would opt to go back to the hospital. Satisfaction was high with both settings, slightly favoring drug administration in hospital. Qualitative data shows that patients while emphasizing the importance of the relationship with the healthcare team, had increased concerns about safety as a result of COVID-19. Conclusions: The experience during the COVID-19 pandemic has increased self-management-skills in some patients, but long-term follow-up is needed. It has repercussions for future shared decision making for patients and their healthcare teams.
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