Interstitial lung diseases (ILD) are a heterogeneous group of rare diffuse diseases affecting the lung parenchyma in children and adults. Childhood interstitial lung diseases (chILD) are often diagnosed at very young age, affect the developing lung, and can have different presentations and prognosis compared to adult forms of these diseases. In addition, chILD in many cases may apparently remit, and have a better response to therapy and better prognosis than adult ILD. Many affected children will reach adulthood with minimal activity or clinical remission of the disease. They need continuing care and follow-up from childhood to adulthood if the disease persists and progresses over time, but also if they are asymptomatic and in full remission. Therefore, for every chILD patient an active transition process from paediatric to adult care should be guaranteed. This European Respiratory Society (ERS) statement provides a review of the literature and current practice concerning transition of care in chILD. It draws on work in existing transition care programmes in other chronic respiratory diseases, disease-overarching transition-of-care programmes, evidence on the impact of these programmes on clinical outcomes, current evidence regarding long-term remission of chILD as well as the lack of harmonisation between the current adult ILD and chILD classifications impacting on transition of care. While the transition system is well established in several chronic diseases, such as cystic fibrosis or diabetes mellitus, we could not find sufficient published evidence on transition systems in chILD. This statement summarises current knowledge, but cannot yet provide evidence-based recommendations for clinical practice.

• MeSH
• dítě MeSH
• dospělí MeSH
• intersticiální plicní nemoci * terapie   diagnóza   MeSH
• lidé MeSH
• mladiství MeSH
• pneumologie normy   MeSH
• přechod k lékaři pro dospělé * normy   organizace a řízení   MeSH
• prognóza MeSH
• společnosti lékařské MeSH
• Check Tag
• dítě MeSH
• dospělí MeSH
• lidé MeSH
• mladiství MeSH
• Publikační typ
• časopisecké články MeSH
• přehledy MeSH
• Geografické názvy
• Evropa MeSH

• MeSH
• dítě * MeSH
• kvalita života MeSH
• lidé MeSH
• mladiství MeSH
• nádory * komplikace   psychologie   MeSH
• následná péče organizace a řízení   trendy   MeSH
• nežádoucí účinky léčiv klasifikace   MeSH
• pooperační komplikace klasifikace   MeSH
• přechod k lékaři pro dospělé organizace a řízení   MeSH
• protinádorové látky škodlivé účinky   MeSH
• riziko MeSH
• rizikové faktory MeSH
• věkové faktory MeSH
• Check Tag
• dítě * MeSH
• lidé MeSH
• mladiství MeSH
• Publikační typ
• přehledy MeSH

OBJECTIVES: To provide an overview of the paediatric rheumatology (PR) services in Europe, describe current delivery of care and training, set standards for care, identify unmet needs and inform future specialist service provision. METHODS: An online survey was developed and presented to national coordinating centres of the Paediatric Rheumatology International Trials Organisation (PRINTO) (country survey) and to individual PR centres (centre and disease surveys) as a part of the European Union (EU) Single Hub and Access point for paediatric Rheumatology in Europe project. The survey contained components covering the organization of PR care, composition of teams, education, health care and research facilities and assessment of needs. RESULTS: Response rates were 29/35 (83%) for country surveys and 164/288 (57%) for centre surveys. Across the EU, approximately one paediatric rheumatologist is available per million population. In all EU member states there is good access to specialist care and medications, although biologic drug availability is worse in Eastern European countries. PR education is widely available for physicians but is insufficient for allied health professionals. The ability to participate in clinical trials is generally high. Important gaps were identified, including lack of standardized clinical guidelines/recommendations and insufficient adolescent transition management planning. CONCLUSION: This study provides a comprehensive description of current specialist PR service provision across Europe and did not reveal any major differences between EU member states. Rarity, chronicity and complexity of diseases are major challenges to PR care. Future work should facilitate the development, dissemination and implementation of standards of care, treatment and service recommendations to further improve patient-centred health care across Europe.

• MeSH
• biologické přípravky terapeutické užití   MeSH
• biomedicínský výzkum statistika a číselné údaje   MeSH
• dítě MeSH
• dostupnost zdravotnických služeb organizace a řízení   normy   MeSH
• lidé MeSH
• mezisektorová spolupráce MeSH
• monitorování léčiv metody   MeSH
• poskytování zdravotní péče organizace a řízení   normy   MeSH
• přechod k lékaři pro dospělé organizace a řízení   normy   MeSH
• průzkumy zdravotní péče MeSH
• revmatické nemoci terapie   MeSH
• revmatologie výchova   organizace a řízení   normy   MeSH
• služby zdravotní péče o dítě organizace a řízení   normy   MeSH
• spotřeba léčiv statistika a číselné údaje   MeSH
• standardní péče MeSH
• studium lékařství organizace a řízení   normy   MeSH
• výzkum zdravotnických služeb metody   MeSH
• zdravotnické služby - potřeby a požadavky statistika a číselné údaje   MeSH
• Check Tag
• dítě MeSH
• lidé MeSH
• Publikační typ
• časopisecké články MeSH
• multicentrická studie MeSH
• práce podpořená grantem MeSH
• Geografické názvy
• Evropa MeSH

The improved survival in people with cystic fibrosis has led to an increasing number of patients reaching adulthood. This trend is likely to be maintained over the next decades, suggesting a need to increase the number of centres with expertise in the management of adult patients with cystic fibrosis. These centres should be capable of delivering multidisciplinary care addressing the complexity of the disease, in addition to addressing the psychological burden on patients and their families. Further issues that require attention are organ transplantation and end of life management.Lung disease in adults with cystic fibrosis drives most of the clinical care requirements, and major life-threatening complications, such as respiratory infection, respiratory failure, pneumothorax and haemoptysis, and the management of lung transplantation require expertise from trained respiratory physicians. The taskforce therefore strongly reccommends that medical leadership in multidisciplinary adult teams should be attributed to a respiratory physician adequately trained in cystic fibrosis management.The task force suggests the implementation of a core curriculum for trainees in adult respiratory medicine and the selection and accreditation of training centres that deliver postgraduate training to the standards of the HERMES programme.

• MeSH
• adherence pacienta MeSH
• cystická fibróza psychologie   terapie   MeSH
• dospělí MeSH
• lidé MeSH
• management nemoci MeSH
• péče o umírající * MeSH
• pneumologie výchova   pracovní síly   organizace a řízení   MeSH
• poradní výbory MeSH
• přechod k lékaři pro dospělé organizace a řízení   MeSH
• sociální opora MeSH
• společnosti lékařské MeSH
• transplantace plic MeSH
• zdravotnické plánování MeSH
• zdravotnické služby - potřeby a požadavky * MeSH
• Check Tag
• dospělí MeSH
• lidé MeSH
• Publikační typ
• časopisecké články MeSH
• konsensus - konference MeSH
• Geografické názvy
• Evropa MeSH