‘Everyone has heard of it, but no one knows what it is’: A qualitative study of patient understanding and experience of herpes zoster
Problem
Shingles (herpes zoster), caused by reactivation of the varicella-zoster virus, is usually diagnosed and managed in primary care. 1 in 3 people will develop shingles, and its effects can impact on quality of life, yet there has been little qualitative research about patient experience and understanding of shingles. Exploring patients’ understanding of the condition will help address any misconceptions, and facilitate better communication between patients and primary care practitioners and reduce the impact of the condition on quality of life.
Approach
Qualitative semi-structured interviews were undertaken remotely with 29 patients participating in a randomised controlled trial in primary care in England (ATHENA, ISRCTN14490832). ATHENA is a trial comparing amitriptyline with placebo for the prevention of post-herpetic neuralgia. Participants were aged ≥50 and had all been diagnosed in primary care within six days of shingles rash onset. Interviewees were sampled for diversity in terms of pain, intervention adherence, age, gender, and ethnicity. We sampled from both trial arms, remaining masked to study allocation. Data were analysed using reflexive thematic analysis. Members of a patient and public involvement group, all with experience of shingles, were involved in refining the topic guide and interpretation of findings.
Findings
Participants’ understanding of shingles was limited, particularly pre-diagnosis. They looked to the experiences of others to understand how it would affect them, but found little consistency, and so prognostic uncertainty was a source of concern for participants. The diagnosis led some to reflect on their status as ageing individuals. Some participants attributed their diagnosis to ‘low’ mental wellbeing due to various factors e.g. caring responsibilities, work stress, or the season. Participants reported that healthcare professionals sometimes reinforced this. Such explanations and narratives, which have limited supportive evidence, led to some people blaming themselves and instigating life changes with far reaching consequences.
Consequences
Shingles intersected with a wide range of social and biographical aspects of individuals’ lives. It raised questions for them about their age, everyday life stresses, and mental wellbeing. Uncertainties regarding causation and prognosis should be acknowledged by primary care practitioners to improve understanding and moderate the impact of the condition on patients’ lives. Primary care practitioners and public health campaigns should ensure patients understand that they should not blame themselves for their illness.