247 research outputs found

    P094 Comprehensive comparison of juvenile-onset systemic lupus erythematosus guidelines for diagnosis and management to those used in adult-onset disease

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    Abstract Background/Aims Juvenile-onset systemic lupus erythematosus (JSLE) is a rare autoimmune disorder that causes multisystem damage. Paucity of data limits the evidence upon which to base recommendations for diagnosis, monitoring, and management of JSLE. JSLE patients often present more acutely, with more severe complications and greater need for corticosteroids and disease-modifying therapies earlier in life when compared to those with adult-onset SLE (aSLE). The SHARE initiative generated a set of guidelines to standardise JSLE care across Europe. This aim was to undertake a comprehensive comparison aimed at comparing the SHARE guidelines to those developed by the BSR (for aSLE) to identify similarities, differences, and areas in which more research was needed. Methods The SHARE evidence-based, consensus-derived recommendations were established by a European wide panel of paediatric rheumatologists according to EULAR standard operating procedures using a systematic literature search with strict inclusion criteria. Adult-derived evidence was included when lack of paediatric literature existed but reviewed to adapt adult guidelines to be more suitable for paediatric use. The BSR guidelines built upon existing EULAR guidelines, selecting specific recommendations by prioritisation. Both SHARE and BSR used the same method of validating guidelines using Level of Evidence, grade of recommendation and strength of agreement by the panel (SOA) to support their recommendations. A systematic comparison was performed by identifying specific subgroups of recommendations related to: diagnosis, background, neuropsychiatric and monitoring and management guidelines. These subgroups were then compared by assessing the number of guidelines related to each group and the average SOA for each. A detailed comparison into the specific guidelines was then performed to provide in depth analysis of the similarities and differences between the groups and identify areas missing and where more work was needed. Results There are many similarities between the two sets of recommendations. Although some of these are a result of the manifestations being the same in adults and children, a significant proportion of these similarities were due to the lack of background data to base recommendations on for JSLE. Therefore, adult-derived guidelines, particularly the EULAR guidelines have been used which were also used as background for BSR recommendations. A key difference was the lack of recommendations regarding neuropsychiatric manifestations (NP-aSLE) in adult-onset disease. A detailed comparison between individual guidelines has been generated and potential reasons for the discrepancies between the guidelines identified. Conclusion The results demonstrate the need for significantly more research to inform generation of more specific JSLE guidelines, particularly in management of the disease manifestations specific to children. Many similarities between these adult and paediatric guidelines underline the importance of generating common guidelines where possible for JSLE and aSLE. More work is needed in NP-aSLE to produce more balanced generalised results. Disclosure T.E. Kelly: None. M.W. Beresford: None. </jats:sec

    Henoch Schonlein Purpura – A 5-Year Review and Proposed Pathway

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    Henoch Schonlein Purpura (HSP) is the commonest systemic vasculitis of childhood typically presenting with a palpable purpuric rash and frequently involving the renal system. We are the first group to clinically assess, critically analyse and subsequently revise a nurse led monitoring pathway for this condition

    A novel dried blood spot-LCMS method for the quantification of methotrexate polyglutamates as a potential marker for methotrexate use in children

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    Objective: Development and validation of a selective and sensitive LCMS method for the determination of methotrexate polyglutamates in dried blood spots (DBS). Methods: DBS samples [spiked or patient samples] were prepared by applying blood to Guthrie cards which was then dried at room temperature. The method utilised 6-mm disks punched from the DBS samples (equivalent to approximately 12 μl of whole blood). The simple treatment procedure was based on protein precipitation using perchloric acid followed by solid phase extraction using MAX cartridges. The extracted sample was chromatographed using a reversed phase system involving an Atlantis T3-C18 column (3 μm, 2.1x150 mm) preceded by Atlantis guard column of matching chemistry. Analytes were subjected to LCMS analysis using positive electrospray ionization. Key Results: The method was linear over the range 5-400 nmol/L. The limits of detection and quantification were 1.6 and 5 nmol/L for individual polyglutamates and 1.5 and 4.5 nmol/L for total polyglutamates, respectively. The method has been applied successfully to the determination of DBS finger-prick samples from 47 paediatric patients and results confirmed with concentrations measured in matched RBC samples using conventional HPLC-UV technique. Conclusions and Clinical Relevance: The methodology has a potential for application in a range of clinical studies (e.g. pharmacokinetic evaluations or medication adherence assessment) since it is minimally invasive and easy to perform, potentially allowing parents to take blood samples at home. The feasibility of using DBS sampling can be of major value for future clinical trials or clinical care in paediatric rheumatology. © 2014 Hawwa et al

    Communication about Children's Clinical Trials as Observed and Experienced: Qualitative Study of Parents and Practitioners

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    Recruiting children to clinical trials is perceived to be challenging. To identify ways to optimise recruitment and its conduct, we compared how parents and practitioners described their experiences of recruitment to clinical trials
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