title: Diagnostic Pathways as Social and Participatory Practices: The Case of Herpes Simplex Encephalitis.
abstract: 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.
authors.affiliation: Department of Public Health and Policy, University of Liverpool, Liverpool, United Kingdom.
authors.forename: Jessie
authors.initials: J
authors.lastname: Cooper
authors.affiliation: Department of Public Health and Policy, University of Liverpool, Liverpool, United Kingdom.
authors.forename: Ciara
authors.initials: C
authors.lastname: Kierans
authors.affiliation: Institute of Infection and Global Health, University of Liverpool, Liverpool, United Kingdom.|Tropical and Infectious Diseases Unit, The Royal Liverpool and Broadgreen University Hospitals Trust, Liverpool, United Kingdom.
authors.forename: Sylviane
authors.initials: S
authors.lastname: Defres
authors.affiliation: Institute of Infection and Global Health, University of Liverpool, Liverpool, United Kingdom.|The Encephalitis Society, Malton, North Yorkshire, United Kingdom.
authors.forename: Ava
authors.initials: A
authors.lastname: Easton
authors.affiliation: Institute of Infection and Global Health, University of Liverpool, Liverpool, United Kingdom.|Department of Neurology, Alder Hey Children's NHS Foundation Trust, Liverpool, United Kingdom.
authors.forename: Rachel
authors.initials: R
authors.lastname: Kneen
authors.affiliation: Institute of Infection and Global Health, University of Liverpool, Liverpool, United Kingdom.|Department of Neurology, The Walton Centre NHS Foundation Trust, Liverpool, United Kingdom.|NIHR Health Protection Research Unit in Emerging and Zoonotic Infections, University of Liverpool, Liverpool, United Kingdom.
authors.forename: Tom
authors.initials: T
authors.lastname: Solomon
mesh_terms: D000212:Acyclovir / Q000627:therapeutic use; D000293:Adolescent; D000328:Adult; D000368:Aged; D000998:Antiviral Agents / Q000627:therapeutic use; D020803:Encephalitis, Herpes Simplex / Q000175:diagnosis* / Q000188:drug therapy; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D055815:Young Adult
chemical_list: D000998:Antiviral Agents; D000212:Acyclovir