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AB0873 Comprehensive Medical and Psychosocial Care To Reduce The Burden of Chronic Rheumatic Diseases in Children: Two-Year Experience of The French Network Resrip
  1. L. Rossi-Semerano1,
  2. P. Dusser2,
  3. C. Hascoët3,
  4. I. Koné-Paut4
  1. 1Paediatric Rheumatology, National Reference Centre for Auto-inflammatory Diseases
  2. 2Paediatric Rheumatology
  3. 3RESRIP (Réseau Rhumatismes Inflammatoires Pédiatriques), Bicêtre Hospital
  4. 4Paediatric Rheumatology, National Reference Centre for Auto-inflammatory Diseases, Bicêtre Hospital, University Paris Sud, le Kremlin Bicêtre, France

Abstract

Background Chronic rheumatic diseases (CRD) in children are associated with significant morbidity and disability, poor quality of life and impact on families. In the region of Paris (France), CRD affect around 2000 children. Management of CRD involves different physicians and health professionals, in a multidisciplinary approach that is particularly valuable in paediatric patients. The RESRIP (Réseau pour les Rhumatismes Inflammatoires Pédiatriques) network has been created to improve coordination between health professionals and personalize patient care for paediatric patients affected by CRD

Objectives To describe demographics, socioeconomic features and diseases characteristics of patients enrolled in the RESRIP network in a 2-year period

Methods Retrospective study involving patients included in the network (September 2013-December 2015). Inclusion criteria were ≥2 of the following: disease severity (defined as a disease impacting on ≥1 of the following: physical/psychological status, school attendance, growth/development; complexity of treatment); association of ≥2 diseases; necessity of ≥3 different health professionals; socioeconomic frailty; demand of support expressed by the patient/parents; transition to adult health care; patient followed in a peripheral hospital

Results 147 patients (103F, 44M, median age at disease onset 4.2 y (0.42–15.2) were included. Median time to diagnosis was 4 months (0–134). Median disease duration at enrolment in the network was 14 months (1–172). Main diseases were: juvenile idiopathic arthritis (JIA) (49.7%) (polyarticular 38%, oligoarticular 29%, enthesitis-related arthritis 18%, psoriatic arthritis 11%, systemic arthritis 4%); connective tissue diseases (CTDs) (19%) (overlap-syndrome: 43%, systemic lupus erythematosus: 32%, dermatomyositis 21%, systemic sclerosis 4%) and auto-inflammatory diseases (AIDs) (14.3%) (FMF 52%, Mevalonate Kinase deficiency 4.8%, PFAPA 4.8%, CRMO 28%, other 9.5%). Inclusion criteria were: disease severity (82%), necessity of ≥3 different health professionals (80%), demand of support expressed by the patient or the parents (28%), socioeconomic frailty (24%), association of ≥2 diseases (20%), patient followed in a peripheral hospital (8%), transition to adult healthcare (7%). Inclusion criteria differed according to the disease: for JIA, it was the necessity of several health professionals (96%), mostly physiotherapists and nurses, while disease severity was the main criterion for CTDs (100%) and for AIDs (72%). For AIDs, the demand of support by patient/parents was a frequent reason for enrolment (53%)

Conclusions RESRIP enrolled mostly patients with JIA, CTDs and AIDs. Disease severity and the necessity of multiple health professionals were the main identified reasons to be followed in the network. These data confirm that CRD patients and their families are in need of support for everyday care. Health networks can provide help by improving care coordination and treatment adherence

Disclosure of Interest None declared

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