Background:Patient-Reported Expanded Disability Status Scale (PREDSS) tools are an attractive alternative to the Expanded Disability Status Scale (EDSS) during long term or geographically challenging studies, or in pressured clinical service environments.Objectives:Because the studies reporting these tools have used different metrics to compare the PREDSS and EDSS, we undertook an individual patient data level analysis of all available tools.Methods:Spearman’s rho and the Bland–Altman method were used to assess correlation and agreement respectively.Results:A systematic search for validated PREDSS tools covering the full EDSS range identified eight such tools. Individual patient data were available for five PREDSS tools. Excellent correlation was observed between EDSS and PREDSS with all tools. A higher level of agreement was observed with increasing levels of disability. In all tools, the 95% limits of agreement were greater than the minimum EDSS difference considered to be clinically significant. However, the intra-class coefficient was greater than that reported for EDSS raters of mixed seniority. The visual functional system was identified as the most significant predictor of the PREDSS–EDSS difference.Conclusion:This analysis will (1) enable researchers and service providers to make an informed choice of PREDSS tool, depending on their individual requirements, and (2) facilitate improvement of current PREDSS tools.
PurposeThe aim of this study is to report the efficacy of long subcutaneous tunnelling of external ventricular drains in reducing rates of infection and catheter displacement in a paediatric population.MethodsIn children requiring external ventricular drainage, a long-tunnelled drain was placed and managed according to a locally agreed guideline. End points were novel CSF infection incurred during the time of drainage and re-operation to re-site displaced catheters. Data were compared to other published series.ResultsOne hundred eighty-one long-tunnelled external ventricular drains (LTEVDs) were inserted. The mean age was 6.6 years (range 0–15.5 years). Reasons for insertion included intraventricular haemorrhage (47 %), infection (27 %), tumour-related hydrocephalus (7.2 %), as a temporising measure (17 %) and trauma (2.2 %). The overall new infection rate for LTEVD was 2.76 %. If the 48 cases where LTEVDs were inserted to treat an existing infection are excluded, the infection rate was 3.8 % (5/133). The mean duration of insertion was 10 days (range 0–42 days). Four LTEVDs (2.2 %) were inadvertently dislodged, requiring reinsertion. Thirteen patients required removal of EVD alone.There was a significant difference (p < 0.05) when comparing our infection rate to 14 publications of infection rates in short-tunnelled EVDs; however, there was no difference when comparing our data to three publications using LTEVDs.ConclusionThe use of an antibiotic-impregnated LTEVD, managed according to a predefined guideline, is associated with significantly reduced infection and displacement rates when compared with contemporary series. It is suggested that this reduction is of both clinical and economic benefits.
Technology development is gathering pace in epilepsy with seizure detection devices promising to transform self‐care and service provision. However, such accounts often neglect the uncertainties, displacements and responsibilities that technology‐supported care generates. This review brings together a heterogeneous literature, identified through systematic searches in 8 databases and snowball searching, to interrogate how technology becomes positioned in epilepsy care. We took a hermeneutic approach in our analysis of the 206 included articles, which resulted in the development of a conceptual framework surfacing the underlying logics by which technology‐supported epilepsy care is organised. Each of these logics enacts different techno‐scientific futures and carries specific assumptions about how (often imagined) ‘users’ and their bodies become co‐constituted. Our review shows that studies in this area remain primarily deterministic and technology‐focused. Few draw phenomenological insights on lived experiences with epilepsy or use social theory to problematise the role of technology. We propose future directions for sociotechnical, theory‐driven studies of technology in epilepsy care and offer a framework transferable across other long‐term conditions.
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