Individual and environmental determinants associated with longer times to access pediatric rheumatology centers for patients with juvenile idiopathic arthritis, a JIR cohort study.

Autor: Chausset A; CRECHE Unit, INSERM CIC 1405, Department of Pediatrics, CHU Clermont-Ferrand, Clermont-Ferrand, France. achausset@chu-clermontferrand.fr.; Research on Healthcare Performance (RESHAPE), INSERM U1290, Claude Bernard University Lyon 1, Lyon, France. achausset@chu-clermontferrand.fr.; Pédiatrie, CHU Estaing, 1 Place Lucie & Raymond Aubrac, Clermont-Fd cedex1, 63003, France. achausset@chu-clermontferrand.fr., Lambert C; Biostatistics Unit, DRCI, CHU Clermont-Ferrand, Clermont-Ferrand, France., Belot A; Pediatric Nephrology, Rheumatology, Dermatology, HFME, Hospices Civils de Lyon, National Referee Centre RAISE & INSERM U1111, Lyon University, Lyon, France., Merlin E; CRECHE Unit, INSERM CIC 1405, Department of Pediatrics, CHU Clermont-Ferrand, Clermont-Ferrand, France., Cannizzaro E; Department of Rheumatology, University Children's Hospital, University of Zurich, Zurich, Switzerland., Kone-Paut I; Department of Pediatrics & Pediatric Rheumatology, Centre de référence maladies auto-inflammatoires rares et amylose inflammatoire (CEREMAIA), Bicêtre University, Paris Sud Hospital, Le Kremlin-Bicêtre, France., Ballot C; Pediatric Hematology, Jean-Minjoz Hospital, Besançon, France., Devauchelle V; Rheumatology Department, CHU Brest and Brest University, INSERM UMR 1227, Brest, France., Poignant S; General Pediatrics, CHU Nantes, Nantes, France., Carlomagno R; Pediatric Immuno-Rheumatology of Western Switzerland, Department Women-Mother-Child, Lausanne University Hospital, Lausanne, Switzerland.; University Hospital, Geneva, Switzerland., Lohse A; Department of Rheumatology, Nord Franche-Comté Hospital, Belfort, France., Barbier C; Pediatric Immunology, Albert Michallon Hospital, Grenoble, France., Despert V; Department of Pediatrics, CHU Rennes, Rennes, France., Carbasse A; Department of Pediatrics, Hôpital Arnaud de Villeneuve, CHRU Montpellier, Montpellier, France., Sparsa L; Rheumatology, CH Mulhouse, Mulhouse, France., Adank E; Department of Pediatrics, Kantonsspital Graubünden, Chur, Switzerland., Vanoni F; Institute of Pediatrics of Southern Switzerland, EOC, Bellinzona, Switzerland., Reumaux H; Pediatric Rheumatology, Lille University Hospital, Lille, France., Pillet P; Department of Pediatrics, Hôpital des Enfants, CHRU Bordeaux, Bordeaux, France., Kaiser D; Department of Pediatrics, Centre Hospitalier Cantonal Luzern, Lucerne, Switzerland., Hofer M; Pediatric Immuno-Rheumatology of Western Switzerland, Department Women-Mother-Child, Lausanne University Hospital, Lausanne, Switzerland.; University Hospital, Geneva, Switzerland., Freychet C; Research on Healthcare Performance (RESHAPE), INSERM U1290, Claude Bernard University Lyon 1, Lyon, France.; Pediatric Nephrology, Rheumatology, Dermatology, HFME, Hospices Civils de Lyon, National Referee Centre RAISE & INSERM U1111, Lyon University, Lyon, France.; Pediatrics, CHU Saint-Etienne, Saint-Etienne, France., Schott AM; Research on Healthcare Performance (RESHAPE), INSERM U1290, Claude Bernard University Lyon 1, Lyon, France.
Jazyk: angličtina
Zdroj: Pediatric rheumatology online journal [Pediatr Rheumatol Online J] 2023 Mar 14; Vol. 21 (1), pp. 24. Date of Electronic Publication: 2023 Mar 14.
DOI: 10.1186/s12969-023-00809-8
Abstrakt: Background: Despite guidelines, poor access to appropriate care for juvenile idiopathic arthritis (JIA) patients remains a global issue. Prompt referral to a pediatric rheumatology (PR) center and effective care is known to be critical for changing the natural history of the disease and improving long-term prognosis. This project assesses socio-economic factors of delayed referral to a pediatric rheumatologist (PRst) for JIA patients in France and Switzerland within the Juvenile Inflammatory Rheumatism (JIR) Cohort.
Methods: All patients diagnosed with JIA, presenting at one center of the JIRcohort in France or Switzerland with additional data on referral pathway were included. Patient characteristics at first visit to the PR center, dates of visits to healthcare providers during referral, and parent characteristics were extracted from the JIRcohort database.
Results: Two hundred fifty children were included. The overall median time to first PR assessment was 2.4 months [1.3; 6.9] and ranged widely across the JIA subtypes, from 1.4 months [0.6; 3.8] for children with systemic juvenile idiopathic arthritis (sJIA) to 5.3 months [2.0; 19.1] for children with enthesitis-related arthritis (ERA). A diagnosis of ERA and an appointment with an orthopedist during the referral pathway were significantly associated with a longer time before the first PR visit (hazard ratio HR 0.50 [95% CI: 0.29; 0.84]) and HR 0.68 [95% CI: 0.49; 0.93], respectively) in multivariable analysis. Having a mother with a post-graduate educational attainment level was tendentially associated with a shorter time before the first PR visit, (HR 1.32 [95% CI: 0.99; 1.78]).
Conclusions: Time to first PRst visit was most often short compared to other studies and close to the British recommendations. However, this time remained too long for many patients. We observed no social inequities in access to a PRst, but we show the need to improve effective pathway and access to a PR center for JIA patients.
(© 2023. The Author(s).)
Databáze: MEDLINE
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