Logo

Transitional care of young people with juvenile idiopathic arthritis in Italy: results of a Delphi consensus survey

1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19, 20, 21, 22, 23, 24, 25; on behalf of the Italian Paediatric Rheumatology Study Group and the Italian Society of Rheumatology

  1. Dip. di Neuroscienze, Riabilitazione, Oftalmologia, Genetica e Scienze Materno-Infantili (DiNOGMI), Univ. di Genova; Clinica Pediatrica e Reumatologia, IRCCS Ist. G.Gaslini, Genoa, Italy; and Sechenov First Moscow State Medical Univ., Russian Federation.
  2. Struttura Complessa di Reumatologia, Centro Ortopedico Traumatologico Gaetano Pini CTO, Milan, Italy.
  3. Department of Clinical Sciences and Community Health, University of Milan, Italy.
  4. UOS Reumatologia Pediatrica, Dipartimento Clinico di Pediatria, Azienda Ospedaliero Universitaria Federico II, Naples, Italy.
  5. Servizio Regionale di Reumatologia Pediatrica, Clinica Pediatrica, Ospedale Clinicizzato, Chieti, Italy.
  6. Clinica Pediatrica, Università degli Studi di Brescia and ASST Spedali Civili di Brescia, Italy.
  7. Dipartimento di Neuroscienze, Riabilitazione, Oftalmologia, Genetica e Scienze Materno-Infantili (DiNOGMI), Università degli Studi di Genova; and Clinica Pediatrica e Reumatologia, IRCCS Istituto G. Gaslini, Genoa, Italy.
  8. Reumatologia, Dipartimento di Medicina Interna e Specialità Mediche, Università degli Studi La Sapienza, Policlinico Umberto I, Rome, Italy.
  9. UOC Pediatria, Ospedale Sant’Eugenio, Rome, Italy.
  10. Dipartimento Regionale di Reumato- logia, AOR San Carlo, Potenza, Italy.
  11. Reumatologia, Dipartimento Pediatrie Specialistiche, Ospedale Pediatrico Bambino Gesù, Rome, Italy.
  12. UOC Reumatologia, Dipartimento di Medicina, Azienda Ospedaliera di Padova, Italy.
  13. Struttura Semplice Dipartimentale di Reumatologia Pediatrica e dell’Adolescenza, AUSL-IRCSS Arcispedale Santa Maria Nuova, Reggio Emilia, Italy.
  14. UOC Genetica e Immunologia Pediatrica, Sezione di Immunoinfettivologia e Reumatologia Pediatrica, Azienda Ospedaliero Universitaria G. Martino, Messina, Italy.
  15. UOC Reumatologia, Azienda Ospedaliero Universitaria S. Anna Ferrara e Dipartimento di Scienze Mediche, Università degli Studi di Ferrara, Italy.
  16. UOC Reumatologia, Policlinico Universitario A. Gemelli-IRCCS, Università Cattolica del Sacro Cuore, Rome, Italy.
  17. Dipartimento di Emergenza e Trapianti d’Organo, Facoltà di Medicina e Chirurgia, Università degli Studi di Bari, Italy.
  18. Ambulatorio di Reumatologia Pediatrica, Ospedale Vito Fazzi, Lecce, Italy.
  19. Dipartimento Pro.Sa.M.I. G. D’Alessandro, Università degli Studi di Palermo, Italy.
  20. UOC Reumatologia and UOC Allergologia ed Immunologia Clinica, Policlinico Tor Vergata, Rome, Italy.
  21. UOC Reumatologia Clinica, Centro Ortopedico Traumatologico Gaetano Pini CTO Milan, Italy.
  22. UOC Reumatologia, Arcispedale S. Maria Nuova, Reggio Emilia, Italy.
  23. Centro per la Diagnosi Precoce e la Terapia delle Artriti della Clinica Reumatologica (EAC), Dipartimento di Scienze Cliniche e Molecolari, Università Politecnica delle Marche, Jesi, Italy.
  24. Department of Clinical Sciences and Community Health, University of Milan, Italy.
  25. UOC Reumatologia, IRCCS Fondazione Policlinico San Matteo and Università degli Studi di Pavia, Italy.

CER12000 Submission on line
Paediatric Rheumatology

Rheumatology Article

 

Abstract

OBJECTIVES:
To present the results of a Delphi consensus survey among Italian paediatric and adult rheumatologists on transitional care (TC) of young people (YP) with juvenile idiopathic arthritis (JIA).
METHODS:
A taskforce of 27 paediatric and adult rheumatologists evaluated the applicability of the 2016 EULAR/PReS recommendations for TC to the Italian rheumatology practice and healthcare system and formulated additional country-specific statements aimed to increase their suitability. After a two-round discussion, applicability of EULAR/PReS recommendations and agreement with newly-proposed statements were voted on a 0–10 scale (where 0 = no applicability/agreement and 10 = total applicability/agreement). A mean level of agreement ≥8 was deemed acceptable.
RESULTS:
The consensus threshold was reached for only 4 of the 12 EULAR/PReS recommendations and for 25 of the 27 country-specific statements. Poor agreement with EULAR/PReS recommendations was mostly explained by paucity of centres in Italy that possess both paediatric and adult rheumatologists, disagreement about optimal time of transition start and de nition of transition coordinator, diversity between paediatric and adult clinimetric assessments, and lack of administrative and financial support.
CONCLUSIONS:
This consensus initiative represents an important step forward toward the establishment of a nationwide TC network for YP with JIA in Italy. The main goals established for the future are the identification of adult rheumatology centres that are willing to participate in the TC process, the education of adult rheumatology teams on childhood-onset rheumatic diseases and transition issues, and the increased awareness of public healthcare authorities and other stakeholders about the importance of good-quality TC.

PMID: 31376254 [PubMed]

Received: 17/12/2018 - Accepted : 20/05/2019 - In Press: 25/07/2019