The European network for care of children with paediatric rheumatic diseases: care across borders

Pavla Dolezalova; Jordi Anton; Tadej Avcin; Michael W Beresford; Paul A Brogan; Tamas Constantin; Yona Egert; Ivan Foeldvari; Helen E Foster; Veronique Hentgen; Isabelle Kone-Paut; Jasmine B Kuemmerle-Deschner; Pekka Lahdenne; Bo Magnusson; Alberto Martini; Liza McCann; Kirsten Minden; Seza Ozen; Casper Schoemaker; Pierre Quartier; Angelo Ravelli; Ingrida Rumba-Rozenfelde; Nicola Ruperto; Sebastian Vastert; Carine Wouters; Francesco Zulian; Nico M Wulffraat

doi:10.1093/rheumatology/key439

The European network for care of children with paediatric rheumatic diseases: care across borders

Rheumatology (Oxford). 2019 Jul 1;58(7):1188-1195. doi: 10.1093/rheumatology/key439.

Authors

Pavla Dolezalova¹, Jordi Anton², Tadej Avcin³, Michael W Beresford^{4

5}, Paul A Brogan⁶, Tamas Constantin⁷, Yona Egert⁸, Ivan Foeldvari⁹, Helen E Foster¹⁰, Veronique Hentgen¹¹, Isabelle Kone-Paut¹², Jasmine B Kuemmerle-Deschner¹³, Pekka Lahdenne¹⁴, Bo Magnusson¹⁵, Alberto Martini¹⁶, Liza McCann^{4

5}, Kirsten Minden¹⁷, Seza Ozen¹⁸, Casper Schoemaker¹⁹, Pierre Quartier²⁰, Angelo Ravelli²¹, Ingrida Rumba-Rozenfelde²², Nicola Ruperto²³, Sebastian Vastert¹⁹, Carine Wouters²⁴, Francesco Zulian²⁵, Nico M Wulffraat¹⁹

Affiliations

¹ Department of Paediatrics and Adolescent Medicine, General University Hospital, and 1st Faculty of Medicine, Charles University in Prague, Praha 2, Czech Republic.
² Department of Pediatric Rheumatology, Hospital Sant Joan de Déu, University of Barcelona, Barcelona, Spain.
³ Department of Allergology, Rheumatology and Clinical Immunology, University of Ljubljana and Children's Hospital, University Medical Centre Ljubljana, Ljubljana, Slovenia.
⁴ Department of Rheumatology, Alder Hey Children's NHS Foundation Trust, Liverpool, UK.
⁵ Department of Women's and Children's Health, Institute of Translational Medicine, University of Liverpool, Liverpool, UK.
⁶ Infection, Immunity and Inflammation, University College London Great Ormond St Institute of Child Health, London, UK.
⁷ 2nd Department of Paediatrics, Semmelweis University, Budapest, Hungary.
⁸ European Network Childhood Arthritis Patient Organisation, Jerusalem, Israel.
⁹ Hamburg Centre for Pediatric and Adolescent Rheumatology, Hamburg, Germany.
¹⁰ Newcastle University, and Great North Children's Hospital, Newcastle Hospitals NHS Foundation Trust, Newcastle Upon Tyne, UK.
¹¹ Reference Center for Autoinflammatory Diseases, Versailles Hospital- CEREMAIA, Le Chesnay, Paris, France.
¹² Pediatric Rheumatology and CEREMAIA, Le Kremlin-Bicêtre University Hospital, APHP, Paris-Sud University, Paris, France.
¹³ Division of Rheumatology, Department of Pediatrics, University Hospital Tuebingen, and Autoinflammation Reference Center Tuebingen, Tuebingen, Germany.
¹⁴ Pediatric Rheumatology, Helsinki Children's Hospital, Helsinki University Central Hospital, Finland.
¹⁵ Pediatric Rheumatology Unit, Karolinska University Hospital, Stockholm, Sweden.
¹⁶ Direzione Scientifica, Istituto Giannina Gaslini, Genoa, Italy.
¹⁷ Department of Rheumatology and Clinical Immunology, German Rheumatism Research Centre Berlin, Charite University Medicine Berlin, Berlin, Germany.
¹⁸ Department for Pediatric Rheumatology, Hacettepe University, Ankara, Turkey.
¹⁹ Department of Pediatric Immunology and Rheumatology, Wilhelmina Kinderziekenhuis, University Medical Center Utrecht, Utrecht, Netherlands.
²⁰ French Reference Centre RAISE, Paris-Descartes University, IMAGINE Institute, Necker Hospital, Assistance Publique-Hopitaux de Paris, Paris, France.
²¹ Clinica Pediatrica e Reumatologia and University of Genoa, Instituto Giannina Gaslini, Genoa, Italy.
²² Faculty of Medicine, University of Latvia, Children University Hospital, Riga, Latvia.
²³ Clinica Pediatrica e Reumatologia, PRINTO Coordinating Centre, Instituto Giannina Gaslini, Genoa, Italy.
²⁴ Department of Pediatrics, Division of Pediatric Rheumatology, University Hospital Gasthuisberg, Leuven, Belgium.
²⁵ Department of Woman and Child Health, University of Padova, Padova, Italy.

PMID: 30668879
DOI: 10.1093/rheumatology/key439

Abstract

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.

Keywords: paediatric rheumatology; service provision; standards of care.

Publication types

Multicenter Study
Research Support, Non-U.S. Gov't

MeSH terms

Biological Products / therapeutic use
Biomedical Research / statistics & numerical data
Child
Child Health Services / organization & administration*
Child Health Services / standards
Delivery of Health Care / organization & administration*
Delivery of Health Care / standards
Drug Monitoring / methods
Drug Utilization / statistics & numerical data
Education, Medical / organization & administration
Education, Medical / standards
Europe
Health Care Surveys
Health Services Accessibility / organization & administration
Health Services Accessibility / standards
Health Services Needs and Demand / statistics & numerical data
Health Services Research / methods
Humans
Intersectoral Collaboration
Rheumatic Diseases / therapy*
Rheumatology / education
Rheumatology / organization & administration*
Rheumatology / standards
Standard of Care
Transition to Adult Care / organization & administration
Transition to Adult Care / standards

Substances

Biological Products