Introduction

This book explores the supernatural literature of Walter Scott, James Hogg, Théophile Gautier, Charles Nodier and G rard de Nerval from a European perspective that casts them as part of a network rather than as the discrete, isolated artistic outcomes of different national literatures, by focusing on the central role played by the literature of E.T.A. Hoffmann during the first half of the nineteenth century. The author claims that Hoffmann had a seminal role through the reactions that his literature aroused. These reactions took place both in the realm of theory, for Hoffmann’s works provoked a great deal of discussion on the nature and purposes of supernatural literature, and also in the realm of their literary writings themselves, with much cross-fertilisation taking place, sometimes enabled through translation and sometimes from direct experience. The author focuses on shared themes like the idealized dead beloved, and dreams, reveries and altered states.

Diagnosing primary ciliary dyskinesia: an international patient perspective

Primary ciliary dyskinesia (PCD) is a rare genetic disorder characterised by progressive sinopulmonary disease, with symptoms starting soon after birth. A European Respiratory Society (ERS) Task Force aims to address disparities in diagnostics across Europe by providing evidence-based clinical practice guidelines. We aimed to identify challenges faced by patients when referred for PCD diagnostic testing. A patient survey was developed by patient representatives and healthcare specialists to capture experience. Online versions of the survey were translated into nine languages and completed in 25 countries. Of the respondents (n=365), 74% were PCD-positive, 5% PCD-negative and 21% PCD-uncertain/inconclusive. We then interviewed 20 parents/patients. Transcripts were analysed thematically. 35% of respondents visited their doctor more than 40 times with PCD-related symptoms prior to diagnostic referral. Furthermore, the most prominent theme among interviewees was a lack of PCD awareness among medical practitioners and failure to take past history into account, leading to delayed diagnosis. Patients also highlighted the need for improved reporting of results and a solution to the “inconclusive” diagnostic status. These findings will be used to advise the ERS Task Force guidelines for diagnosing PCD, and should help stakeholders responsible for improving existing services and expanding provision for diagnosis of this rare disease.