7 research outputs found
Access to pediatric rheumatology care and diagnostic pathway in Juvenile idiopathic arthritis (JIA)
Au dĂ©but de lâĂ©volution de lâarthrite juvĂ©nile idiopathique (AJI), il existe une fenĂȘtre dâopportunitĂ© pendant laquelle lâintroduction dâune thĂ©rapeutique efficace amĂ©liore considĂ©rablement le devenir des patients. Une meilleure comprĂ©hension du dĂ©lai dâaccĂšs au rhumatologue pĂ©diatre (RP) et du parcours de soins des enfants est nĂ©cessaire. Dans une cohorte française, le dĂ©lai mĂ©dian dâaccĂšs au RP Ă©tait de 3,3 mois et bien que les formes non systĂ©miques dâAJI ne soient pas des urgences, 45% Ă©taient passĂ©s par ce service. Dans une cohorte indienne ce dĂ©lai Ă©tait 4,1 mois. Un quart des patients avait Ă©tĂ© diagnostiquĂ© et traitĂ© par des mĂ©decins autres que le RP. Dans la littĂ©rature, le dĂ©lai dâaccĂšs au RP variait entre 3 et 10 mois. Les patients prĂ©sentant une forme systĂ©mique dâAJI avaient le dĂ©lai dâaccĂšs le plus court. Certains paramĂštres clinico-biologiques comme la prĂ©sence dâun gonflement articulaire, de fiĂšvre, dâune Ă©lĂ©vation de la CRP ou de la VS Ă©taient associĂ©s avec un dĂ©lai plus court. Inversement, des enthĂ©sites, un Ăąge plus Ă©levĂ© au dĂ©but des symptĂŽmes ou une douleur isolĂ©e allongeaient le dĂ©lai. Ătonnamment, le dĂ©lai dâaccĂšs au RP variait assez peu entre les pays ou rĂ©gions du monde alors que les systĂšmes de soins sont trĂšs diffĂ©rents. Des recommandations de prise en charge diagnostique standardisĂ©es prĂ©conisant une formation des mĂ©decins de premier recours Ă lâAJI, une collaboration entre les diffĂ©rents intervenants hospitaliers et libĂ©raux et un accĂšs direct, facile et rapide (dans les 4 semaines aprĂšs la demande de consultation) au RP doivent ĂȘtre Ă©laborĂ©es afin de rĂ©duire le dĂ©lai dâaccĂšs aux soins spĂ©cialisĂ©s Ă ces enfants et limiter la perte de chance.JIA studies demonstrate that there is a âwindow of opportunityâ early in the disease course during which appropriate management improves outcomes. A better understanding about access to pediatric rheumatology (PR) care and care pathways is required. In a French cohort, median time to first PR visit was 3.3 months, the median number of health care practitioners met was 3 and although non-systemic JIA are not an emergency, 45% were referred to the emergency room. In an Indian cohort, median time from symptom onset to first PR visit was 4.1 months and median distance travelled 119.5 km. 24% were previously diagnosed as JIA and managed by non pediatric rheumatologists before first PR visit with a worse outcome. In the literature, the median time to first PR visit ranged from 3 to 10 months, with some disparities between referral pathway and patient characteristics. Patients with systemic-onset JIA had the shortest time to referral. Some clinical and biological factors such as swelling, fever, elevated CRP and/or ESR were associated with a shorter time to first PR visit. Conversely, enthesitis, older age at symptom onset, or pain were associated with a longer time. Whatever the country or world region, and despite disparities in healthcare system organization and health care practitioner availabilities, times to access PR were not wide-ranging. Standardized clinical guidelines, doctors training, collaboration networks between hospital and outpatient practice, and fast-track pathways to facilitate prompt referral to specialized teams during the 4 weeks after referral have to be implemented to reduce worldwide disparities in health care
AccÚs aux soins et parcours diagnostique des patients atteints d'arthrite juvénile idiopathique
JIA studies demonstrate that there is a âwindow of opportunityâ early in the disease course during which appropriate management improves outcomes. A better understanding about access to pediatric rheumatology (PR) care and care pathways is required. In a French cohort, median time to first PR visit was 3.3 months, the median number of health care practitioners met was 3 and although non-systemic JIA are not an emergency, 45% were referred to the emergency room. In an Indian cohort, median time from symptom onset to first PR visit was 4.1 months and median distance travelled 119.5 km. 24% were previously diagnosed as JIA and managed by non pediatric rheumatologists before first PR visit with a worse outcome. In the literature, the median time to first PR visit ranged from 3 to 10 months, with some disparities between referral pathway and patient characteristics. Patients with systemic-onset JIA had the shortest time to referral. Some clinical and biological factors such as swelling, fever, elevated CRP and/or ESR were associated with a shorter time to first PR visit. Conversely, enthesitis, older age at symptom onset, or pain were associated with a longer time. Whatever the country or world region, and despite disparities in healthcare system organization and health care practitioner availabilities, times to access PR were not wide-ranging. Standardized clinical guidelines, doctors training, collaboration networks between hospital and outpatient practice, and fast-track pathways to facilitate prompt referral to specialized teams during the 4 weeks after referral have to be implemented to reduce worldwide disparities in health care.Au dĂ©but de lâĂ©volution de lâarthrite juvĂ©nile idiopathique (AJI), il existe une fenĂȘtre dâopportunitĂ© pendant laquelle lâintroduction dâune thĂ©rapeutique efficace amĂ©liore considĂ©rablement le devenir des patients. Une meilleure comprĂ©hension du dĂ©lai dâaccĂšs au rhumatologue pĂ©diatre (RP) et du parcours de soins des enfants est nĂ©cessaire. Dans une cohorte française, le dĂ©lai mĂ©dian dâaccĂšs au RP Ă©tait de 3,3 mois et bien que les formes non systĂ©miques dâAJI ne soient pas des urgences, 45% Ă©taient passĂ©s par ce service. Dans une cohorte indienne ce dĂ©lai Ă©tait 4,1 mois. Un quart des patients avait Ă©tĂ© diagnostiquĂ© et traitĂ© par des mĂ©decins autres que le RP. Dans la littĂ©rature, le dĂ©lai dâaccĂšs au RP variait entre 3 et 10 mois. Les patients prĂ©sentant une forme systĂ©mique dâAJI avaient le dĂ©lai dâaccĂšs le plus court. Certains paramĂštres clinico-biologiques comme la prĂ©sence dâun gonflement articulaire, de fiĂšvre, dâune Ă©lĂ©vation de la CRP ou de la VS Ă©taient associĂ©s avec un dĂ©lai plus court. Inversement, des enthĂ©sites, un Ăąge plus Ă©levĂ© au dĂ©but des symptĂŽmes ou une douleur isolĂ©e allongeaient le dĂ©lai. Ătonnamment, le dĂ©lai dâaccĂšs au RP variait assez peu entre les pays ou rĂ©gions du monde alors que les systĂšmes de soins sont trĂšs diffĂ©rents. Des recommandations de prise en charge diagnostique standardisĂ©es prĂ©conisant une formation des mĂ©decins de premier recours Ă lâAJI, une collaboration entre les diffĂ©rents intervenants hospitaliers et libĂ©raux et un accĂšs direct, facile et rapide (dans les 4 semaines aprĂšs la demande de consultation) au RP doivent ĂȘtre Ă©laborĂ©es afin de rĂ©duire le dĂ©lai dâaccĂšs aux soins spĂ©cialisĂ©s Ă ces enfants et limiter la perte de chance
MISS questionnaire in French version: a good tool for children and parents to assess methotrexate intolerance
International audienceThe aim of this study was to assess the relevance for children and parents to use the French-validated version of the methotrexate intolerance severity score (MISS), a measure of methotrexate intolerance for children suffering from juvenile idiopathic arthritis. The French-version MISS was developed following the "Guidelines for the process of cross-cultural adaptation of self-report measures." The new version was tested in families of children with juvenile idiopathic arthritis who completed the questionnaire twice at a 2-week interval. Item correlations, Cronbach's alpha, and kappa coefficients were computed to evaluate acceptability, internal consistency, and reproducibility. A culturally acceptable version to French was obtained. A total of 71 individuals were included from May 2015 to November 2015. The results show very good acceptability: good response rate (80%), few missing data (\textless1%) and good understanding of parents and children. The inter-item, dimension-item, and inter-dimension correlations were satisfactory (except for "vomiting" items-other items correlation). Cronbach's alpha coefficient was well higher than the usually recommended value of 0.6. The results of validity of internal and external consistencies were satisfactory. We also found good agreement between the test-retest for every family. The empirical discriminative cut-off point of 3 showed a sensitivity of 86% and a specificity of 83%. The MISS questionnaire is quick to complete, easy to use. It can be completed by children or their parents with no significant difference. This validated French-version MISS can help study prevalence and risk factors of methotrexate intolerance, better detect this intolerance, and provide better support for patients on long-term treatment
Skeletal impairment in Pierson syndrome: Is there a role for lamininÎČ2 in bone physiology?
International audienc