Diagnostic Pathways as Social and Participatory Practices: The Case of Herpes Simplex Encephalitis

Jessie Cooper, Ciara Kierans, Sylviane Defres, Ava Easton, Rachel Kneen, Tom Solomon

Herpes simplex virus (HSV) encephalitis is a potentially devastating disease, with significant rates of mortality and co-morbidities. Although the prognosis for people with HSV encephalitis can be improved by prompt treatment with aciclovir, there are often delays involved in the diagnosis and treatment of the disease. In response, National Clinical Guidelines have been produced for the UK which make recommendations for improving the management of suspected viral encephalitis. However, little is currently known about the everyday experiences and processes involved in the diagnosis and care of HSV encephalitis. The reported study aimed to provide an account of the diagnosis and treatment of HSV encephalitis from the perspective of people who had been affected by the condition. Thirty narrative interviews were conducted with people who had been diagnosed with HSV encephalitis and their significant others. The narrative accounts reveal problems with gaining access to a diagnosis of encephalitis and shortfalls in care for the condition once in hospital. In response, individuals and their families work hard to obtain medical recognition for the problem and shape the processes of acute care. As a consequence, we argue that the diagnosis and management of HSV encephalitis needs to be considered as a participatory process, which is co-produced by health professionals, patients, and their families. The paper concludes by making recommendations for developing the current management guidelines by formalising the critical role of patients and their significant others in the identification, and treatment of, HSV encephalitis.

PLOS ONE | DOI:10.1371/journal.pone.0151145 March 9, 2016

Neuroimaging in encephalitis: analysis of imaging findings and interobserver agreement

J. Granerod, N.W.S. Davies, W. Mukonoweshuro, A. Mehta, K. Das, M. Lim, T. Solomon, S. Biswas, L. Rosella, D.W.G. Brown, N.S. Crowcroft on behalf of the UK Public Health England Aetiology of Encephalitis Study Group

Clinical Radiology (2016), http://dx.doi.org/10.1016/j.crad.2016.03.015

Increased rates of sequelae post-encephalitis in individuals attending primary care practices in the United Kingdom: a population-based retrospective cohort study

Julia Granerod, Nicholas W. S. Davies, Parashar P. Ramanuj, Ava Easton, David W. G. Brown, Sara L. Thomas

J Neurol. 2016 Oct 20. [Epub ahead of print)

ImmunoglobuliN in the Treatment of Encephalitis (IgNiTE): protocol for a multicentre randomised controlled trial.

Iro MA, Sadarangani M, Absoud M, et al.

Abstract

Introduction Infectious and immune-mediated encephalitides are important but under-recognised causes of morbidity and mortality in childhood, with a 7% death rate and up to 50% morbidity after prolonged follow-up. There is a theoretical basis for ameliorating the immune response with intravenous immunoglobulin (IVIG), which is supported by empirical evidence of a beneficial response following its use in the treatment of viral and autoimmune encephalitis. In immune-mediated encephalitis, IVIG is often used after a delay (by weeks in some cases), while diagnosis is confirmed. Wider use of IVIG in infectious encephalitis and earlier use in immune-mediated encephalitis could improve outcomes for these conditions. We describe the protocol for the first ever randomised control trial of IVIG treatment for children with all-cause encephalitis.

BMJ Open 2016;6:e012356. doi:10.1136/bmjopen-2016- 012356