Nouvelles thérapies en rhumatologie pédiatrique

Biotherapies are recent treatments, which target molecules implicated in the pathogenesis of inflammatory diseases. In pediatric rheumatology, we use anti-TNF-alpha and abatacept in JIA patients with polyarticular involvement, whereas anti-IL-6 and anti-IL-1 blockers are efficacious in the systemic form of JIA and other auto-inflammatory conditions. These new treatments have significantly improved the control of articular and systemic inflammation and the prognosis of rheumatic diseases. Their effect and their safety on the long-term need to be assessed on large cohorts of patients. Due to the impact of these chronic illnesses on the young patient and its family, and the required specific knowledge, the care of these children should be provided by a multidisciplinary team linked to a centre of competence

Impact of a nurse led telephone intervention on satisfaction and health outcomes of children with inflammatory rheumatic diseases and their families ::a crossover randomized clinical trial

Background. Children suffering from rheumatic disease are faced with multidimensional challenges that affect their quality of life and family dynamics. Symptom management and monitoring of the course of the disease over time are important to minimize disability and pain. Poor disease control and anticipation of the need for treatment changes may be prompted by specialist medical follow-up and regular nurse-led consultations with the patient and families, in which information and support is provided. The purpose of this study was to evaluate the impact of a nurse-led telephone intervention or Telenursing (TN) compared to standard care (SC) on satisfaction and health outcomes of children with inflammatory rheumatic diseases and their parents. Methods. A multicentered, randomized, longitudinal, crossover trial was conducted with pediatrics outpatients newly diagnosed with inflammatory rheumatic diseases. Participants were randomly assigned to two groups TN and SC for 12 months and crossed-over for the following 12 months. TN consisted of providing individualized affective support, health information and aid to decision making. Satisfaction (primary outcome) and health outcomes were assessed with the Client Satisfaction Questionnaire-8 and the Juvenile Arthritis Multidimensional Assessment Report, respectively. A mixed effect model, including a group x time interaction, was performed for each outcome. Results. Satisfaction was significantly higher when receiving TN (OR = 7.7, 95% CI: 1.8–33.6). Morning stiffness (OR = 3.2, 95% CI: 0.97–7.15) and pain (OR = 2.64, 95% CI: 0.97–7.15) were lower in the TN group. For both outcomes a carry-over effect was observed with a higher impact of TN during the 12 first months of the study. The other outcomes did not show any significant improvements between groups. Conclusion. TN had a positive impact on satisfaction and on morning stiffness and pain of children with inflammatory rheumatic diseases and their families. This highlights the importance of support by specialist nurses in improving satisfaction and symptom management for children with inflammatory rheumatisms and their families. Trial registration. ClinicalTrial.gov identifier: NCT01511341 (December 1st, 2012)

Additional file 4: Table S3. of The difference of disease perception by juvenile idiopathic arthritis patients and their parents: analysis of the JAMAR questionnaire

Tuckey post-hoc analysis between groups for JADAS. Legend: statistically significant differences between groups in red. (PDF 55 kb

Additional file 1: Figure S1. of The difference of disease perception by juvenile idiopathic arthritis patients and their parents: analysis of the JAMAR questionnaire

a) age at visit, b) age at disease onset, c) disease duration and d) n° of actives joints in the six groups with results of ANOVA test between groups. (PDF 152 kb

Building a transitional care checklist in rheumatology: A Delphi-like survey

tObjectives: To design a transitional care checklist to be used by and facilitate the work of health pro-fessionals in providing transitional care for children with a chronic rheumatologic disease and theirfamilies.Methods: A Delphi-like study among an international expert panel was carried out in four steps: (1)a working group of 6 specialists established a draft; (2) a web-survey among a panel of internationalexperts evaluated it; (3) a 2-day consensus conference with an expert panel discussed items not reachingagreement; (4) a web-survey among the panel of international experts with the list of reformulated items.Results: The first draft of the checklist included 38 items in 3 phases of transition and 5 age groups.Thirty-three international experts evaluated the checklist reaching ≥ 80% agreement for 26 items and≤ 80% for 12. The consensus conference of 12 experts discussed and redefined the 12 items. Twenty-five international experts filled out the web-survey and all items reached a minimum of 80% agreementexcept one. The final checklist was reached.Conclusions: This Delphi-like study defined what themes should be included and at what age they needto be addressed with patients with a chronic rheumatology disease and their families during transition.This checklist reached a strong international and interdisciplinary consensus while examining transitionin a broad way. It should now be spread widely to health professionals to be used by all those who carefor adolescents aged ≥ 12 years at times of transition. It could be transposed to most chronic conditions.Recommendations for further research are given