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

Date Published: March 9, 2016

Publisher: Public Library of Science

Author(s): Jessie Cooper, Ciara Kierans, Sylviane Defres, Ava Easton, Rachel Kneen, Tom Solomon, Cristina Costa.


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.

Partial Text

Encephalitis is a disease which causes inflammation of the brain tissue; it can be viral, bacterial or immune-mediated in origin [1]. In the UK, herpes simplex virus (HSV) is the most commonly identified infectious cause of encephalitis, with an annual incidence of between 1 in 250,000 to 500,000. The condition can have a devastating impact upon the lives of those affected, many of whom are left with a range of neurocognitive, social, and physical problems as a result of damage to the brain [2–5]. Beyond its immediate consequences for the individual, HSV encephalitis has a large impact on healthcare resources, due to costs associated with hospitalisation and rehabilitation; it also has important longer term consequences for patients, their families, and society, since fewer than 20% of adult sufferers will return to work [3, 5, 6, 7]. The longer term outcome for children is less well studied, but is likely to have similar consequences and even more impact on society due to the age of developing the illness.

The three examples, below, relate to two retrospective encephalitis cases and one prospective case. The first retrospective case is of Stephanie, a woman in her 60s, who was diagnosed with HSV encephalitis in 2005, seven years prior to being interviewed. Stephanie lived by herself and had worked as a psychologist before taking early retirement after suffering from encephalitis. She told her story using notes she had produced from her own and her family members’ recollections of her time in hospital. The second retrospective case is of Greg, a man in his mid-30s with two young children. Greg was diagnosed with probable HSV encephalitis in 2012, 1 year prior to being interviewed. He was made redundant from his managerial job not long after his diagnosis, and, due to struggles with fatigue and memory problems, subsequently took a role with fewer responsibilities. Greg was interviewed with his wife, Nicola. The prospective case relates to Ben, a retired metal worker in his 70s, who had been discharged from hospital after being treated for HSV encephalitis four months prior to being interviewed. Ben told his story alongside his wife, Janet.

The cases presented above describe typical processes by which the diagnosis and care of HSV encephalitis is experienced, and, significantly, gets co-produced by the work of patients and their families. Specifically, these processes include: 1) how a serious medical problem comes to be identified by individuals and their families; 2) the practical work families must do to get medical recognition for the problem and obtain a diagnosis and treatment; 3) the associated experiences of care for encephalitis within hospitals; and 4) and the subsequent efforts of families to organise clinical care around the needs of their relative. These processes can, in turn, be mapped on to two interlinked stages in the experience of the diagnostic and treatment trajectory for HSV encephalitis, namely: 1) access to diagnosis, and 2) care within acute settings. The processes are explained in detail below, under their respective stages within the diagnosis and treatment trajectory. We then discuss the significance of these findings for clinical practice and for the development of the management guidelines for viral encephalitis.