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The European network for care of children with paediatric rheumatic diseases: care across borders
P. Dolezalova, J. Anton, T. Avcin, MW. Beresford, PA. Brogan, T. Constantin, Y. Egert, I. Foeldvari, HE. Foster, V. Hentgen, I. Kone-Paut, JB. Kuemmerle-Deschner, P. Lahdenne, B. Magnusson, A. Martini, L. McCann, K. Minden, S. Ozen, C....
Language English Country Great Britain
Document type Journal Article, Multicenter Study, Research Support, Non-U.S. Gov't
NLK
Free Medical Journals
from 1996 to 1 year ago
Open Access Digital Library
from 1996-01-01
Medline Complete (EBSCOhost)
from 1999-01-01 to 1 year ago
- MeSH
- Biological Products therapeutic use MeSH
- Biomedical Research statistics & numerical data MeSH
- Child MeSH
- Health Services Accessibility organization & administration standards MeSH
- Humans MeSH
- Intersectoral Collaboration MeSH
- Drug Monitoring methods MeSH
- Delivery of Health Care organization & administration standards MeSH
- Transition to Adult Care organization & administration standards MeSH
- Health Care Surveys MeSH
- Rheumatic Diseases therapy MeSH
- Rheumatology education organization & administration standards MeSH
- Child Health Services organization & administration standards MeSH
- Drug Utilization statistics & numerical data MeSH
- Standard of Care MeSH
- Education, Medical organization & administration standards MeSH
- Health Services Research methods MeSH
- Health Services Needs and Demand statistics & numerical data MeSH
- Check Tag
- Child MeSH
- Humans MeSH
- Publication type
- Journal Article MeSH
- Multicenter Study MeSH
- Research Support, Non-U.S. Gov't MeSH
- Geographicals
- Europe 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 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
References provided by Crossref.org
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- $a Dolezalova, Pavla $u Department of Paediatrics and Adolescent Medicine, General University Hospital, and 1st Faculty of Medicine, Charles University in Prague, Praha 2, Czech Republic.
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- $a 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.
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