The European network for care of children with paediatric rheumatic diseases: care across borders
Jazyk angličtina Země Anglie, Velká Británie Médium print
Typ dokumentu časopisecké články, multicentrická studie, práce podpořená grantem
PubMed
30668879
DOI
10.1093/rheumatology/key439
PII: 5298541
Knihovny.cz E-zdroje
- Klíčová slova
- paediatric rheumatology, service provision, standards of care,
- 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
- Názvy látek
- biologické přípravky 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.
2nd Department of Paediatrics Semmelweis University Budapest Hungary
Clinica Pediatrica e Reumatologia and University of Genoa Instituto Giannina Gaslini Genoa Italy
Clinica Pediatrica e Reumatologia PRINTO Coordinating Centre Instituto Giannina Gaslini Genoa Italy
Department for Pediatric Rheumatology Hacettepe University Ankara Turkey
Department of Rheumatology Alder Hey Children's NHS Foundation Trust Liverpool UK
Department of Woman and Child Health University of Padova Padova Italy
Direzione Scientifica Istituto Giannina Gaslini Genoa Italy
European Network Childhood Arthritis Patient Organisation Jerusalem Israel
Faculty of Medicine University of Latvia Children University Hospital Riga Latvia
Hamburg Centre for Pediatric and Adolescent Rheumatology Hamburg Germany
Pediatric Rheumatology Helsinki Children's Hospital Helsinki University Central Hospital Finland
Pediatric Rheumatology Unit Karolinska University Hospital Stockholm Sweden
Reference Center for Autoinflammatory Diseases Versailles Hospital CEREMAIA Le Chesnay Paris France
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