Patients’, family members’ and healthcare practitioners’ experiences of Stevens–Johnson syndrome and toxic epidermal necrolysis: a qualitative descriptive study using emotional touchpoints

Stevens–Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) are devastating conditions resulting from a severe immune-mediated mucocutaneous reaction which normally occurs as a result of medication.1 In the acute phase, the patient presents with a febrile illness, followed by skin and mucous membrane necrosis and detachment.2 The patient can quickly become critically ill and is treated as a medical emergency. There may be long-lasting psychological effects on patients and their significant others.3 However, there is a dearth of research on the experiences of patients with SJS/TEN, those close to them and healthcare practitioners (HCPs) providing care. This study explored key stakeholder experiences of living with, or caring for, patients with SJS/TEN via a qualitative descriptive design,4 using emotional touchpoint interviews. A touchpoint is a moment when an individual interacts in some way with the health service and an experience is created.5 A purposive sample of patients (n = 2) who had been diagnosed with SJS/TEN, family members of two other patients (n = 2) and HCPs (n = 8) who reflected on their experiences of caring for a number of patients with SJS/TEN, were included in the study. Participants were presented with a range of emotion words and were asked how they felt and their perception of how the patient felt (in the case of family members and HCPs) at different stages of the illness journey, for example ‘at the beginning’, ‘in hospital’ and ‘going home’. Additional questions were asked to expand on their responses. Interview transcripts were analysed using thematic analysis.6 Three themes with two sub-themes were constructed (Table 1). The initial presentation of SJS/TEN symptoms was a frightening and traumatic experience for patients and their close family members. Patients feared for their lives. For HCPs, preservation of life was a priority and concerns were expressed about the importance of ensuring that the patient received optimum care in the best clinical environment, with input from the multi-disciplinary team. Meaningful communication within a caring environment provided patients and their families with hope and reassurance. Caring behaviours, such as compassion, dignity, respect, and HCPs ‘just being there’ for the patient were important for patient recovery. Patients who survived SJS/TEN, experienced mixed emotions when going home from hospital. While they were relieved, as they were alive and well enough to leave hospital, they feared what may lie ahead. After discharge, their mental health and quality of life were affected, and they feared taking any medication. Healthcare practitioners in our study spoke about the importance of advocating on behalf of patients to ensure that they were admitted to the ICU. Valeyrie-Allanore et al.7 highlighted that an ICU referral of patients with severe cutaneous adverse reactions, including SJS/TEN, contributes to improved patient survival and reduces potential sequelae. Referring to the need for the long-term follow-up of survivors, Lee and Creamer8 encourage the inclusion of psychological assessment in the outpatient follow-up care pathway. They pose the question on whether psychological interventions during the acute phase can preclude the occurrence of psychological problems following discharge.8 Adding to the current body of knowledge, these findings provide an understanding of how SJS/TEN affects key stakeholders and informs recommendations to improve patient outcomes (Table 2). Limitations to the study included the use of one clinical site and a small number of patient participants. There are difficulties in researching rare conditions, but Walsh et al.9 advise that this should not deter researchers and HCPs to engage in follow-up discussions with patients to find out more about the psychological consequences of SJS/TEN. Given the psychological impact on patients’ lives, there is a need to prioritize research in this area.10 What is already known about this topic? What does this study add? Recommendations to improve patient outcomes None declared. This research was funded by the Health Research Institute, University of Limerick, Limerick, Ireland. Ethical approval was obtained from University Hospital Limerick Ethics Committee and University of Limerick.

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