5 research outputs found

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

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    To design a transitional care checklist to be used by and facilitate the work of health professionals in providing transitional care for children with a chronic rheumatologic disease and their families. 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 international experts evaluated it; (3) a 2-day consensus conference with an expert panel discussed items not reaching agreement; (4) a web-survey among the panel of international experts with the list of reformulated items. 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% agreement except one. The final checklist was reached. This Delphi-like study defined what themes should be included and at what age they need to 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 transition in a broad way. It should now be spread widely to health professionals to be used by all those who care for adolescents aged≥12 years at times of transition. It could be transposed to most chronic conditions. Recommendations for further research are given

    Transition from paediatric to adult care: what makes it easier for parents?

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    To assess differences between parents of adolescents with chronic illness (CI) going through a self-reported easy or difficult transfer. Seventy-two parents of CI youths who had already transferred to adult care were divided according to whether they considered that the transfer had been easy (n = 45) or difficult (n = 27). We performed a bivariate analysis comparing both groups and variables with a significance level < .1 were included in a logistic regression. Results are presented as adjusted odds ratio (aOR). Over one third of parents (27/72) reported a difficult transfer. At the multivariate level, higher socioeconomic status (aOR: 7.74), parents feeling ready for transfer (aOR: 6.54) and a good coordination between teams (aOR: 7.66) were associated with an easy transfer. An easy transfer for parents is associated with feeling ready and considering that the coordination between teams is good. Health providers should consider these requisites for a successful transfer

    Comparison of paediatric and adult classification criteria in juvenile idiopathic arthritis during the transition from paediatric to adult care.

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    To determine the characteristics of juvenile idiopathic arthritis (JIA) patients seen during the transition period in order to compare paediatric classification criteria with those for adults. Patients with JIA according to the ILAR classification and who had a consultation at transition between 2010 and 2017 were included in a retrospective bi-centre (Lyon, Lausanne) study. JIA classification criteria were compared to ACR/EULAR 2010 criteria for rheumatoid arthritis (RA), Yamaguchi criteria for adult-onset Still's disease (AOSD), ASAS criteria for spondyloarthritis and CASPAR criteria for psoriatic arthritis. One hundred and thirty patients were included: 13.9% with systemic JIA, 22.3% with polyarticular JIA, 22.3% with oligoarticular JIA, 34.6% with enthesitis-related arthritis (ERA) and 6.9% with psoriatic arthritis; 13.1% had suffered from uveitis; 14.5% of patients had erosions or carpitis, mainly those with psoriatic arthritis, polyarticular or systemic JIA; 37.5% of patients with ERA displayed radiological sacroiliitis. When comparing paediatric JIA criteria with adult classifications, we found that: 66.6% of patients with systemic JIA fulfilled the criteria for AOSD, 87.5% of rheumatoid factor-positive polyarticular JIA and 9.5% of rheumatoid factor-negative polyarticular JIA met the criteria for RA, and 34.5% of oligoarticular JIA fulfilled the criteria for spondyloarthritis. Finally, 77.7% of patients with ERA met the criteria for spondyloarthritis, and 100% of patients with psoriatic arthritis JIA met the criteria for psoriatic arthritis. Oligoarticular JIA and rheumatoid factor-negative polyarticular JIA seem to be paediatric entities, whereas the other types of JIA tended to meet the respective adult classification criteria

    Chronic non-bacterial osteomyelitis: a retrospective international study on clinical manifestations and response to treatment.

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    Chronic non-bacterial osteomyelitis (CNO) is a rare non-infectious bone inflammatory disorder; when multifocal, it is referred to as Chronic Recurrent Multifocal Osteomyelitis (CRMO). This study evaluates the demographic, clinical and radiological characteristics of a multi-centre cohort of patients with CNO/CRMO. Demographic and clinical data of patients with an established diagnosis of CNO/CRMO followed at paediatric rheumatology centres across Europe (Italy, France, Slovenia) and India were retrospectively collected. There were no demographic differences across countries, but time to diagnosis was significantly longer in India (p=0.041). Pain was almost invariably present at disease onset; functional impairment was more frequent among Italian and Slovenian patients (p=0.001). The number of sites of bone involvement was similar between genders and countries, with long bone metaphises being the most common site. Raised acute phase reactants, detected in >50% of patients, were not associated with clinical manifestations or response to treatment. Comorbidities, evinced in 37% of patients, were equally distributed between genders and nationalities. Imaging approach was similar across countries, without any association between radiological findings and clinical manifestations. NSAIDs were almost invariably used as first-line treatment, but response rate was significantly lower in Italy (p=0.02). Methotrexate was used in 28% of case, with an overall rate of response of 82%. Health conditions and rate of permanent deformities were similar across different countries. The differences in clinical presentation, radiological features and response to treatment described in this multinational cohort of CNO/CRMO might provide novel insights into this still elusive disease
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