Major psychological complications and decreased health-related quality of life among survivors of Stevens-Johnson syndrome and toxic epidermal necrolysis

Dear Editor, Stevens–Johnson Syndrome (SJS) and toxic epidermal necrolysis (TEN) are life‐threatening mucocutaneous reactions, predominantly drug induced.1 No studies have been conducted on the psychological sequelae or general health‐related quality of life (HRQOL) among survivors of SJS/TEN. Two studies2 3 that explored patients' perspectives of surviving SJS/TEN found a persisting impact on survivors' current lives physically and psychologically,2 as well as many unanswered questions and concerns.3 Survivors of burns were found to be at risk of post‐traumatic stress disorder (PTSD) and other psychological sequelae including depression and anxiety.4 Recent work on drug reaction with eosinophilia and systemic symptoms found that survivors experience anxiety, depression, nightmares and intrusive thoughts.5 In this study we characterize the long‐term psychological complications and HRQOL of SJS/TEN survivors. The study was approved by the research ethics board at Sunnybrook Health Sciences Centre. All participants provided informed consent prior to study inclusion. The cohort included survivors of SJS/TEN treated at Sunnybrook Health Sciences Centre, Toronto, Canada during 1995–2015. Inclusion criteria included biopsy‐proven diagnosis of SJS/TEN and age > 18 years. Exclusion criteria included any medical condition that would disqualify the patient from answering questionnaires. Patients were enrolled in the study from 15 July 2014 to 25 March 2015. Participants were assessed by psychological and HRQOL questionnaires. We chose psychometric, validated scales that would capture symptoms of depression and anxiety in a medical context (Hospital Anxiety and Depression Scale),5 overall psychological distress (General Health Questionnaire‐12, GHQ‐12)6 and evidence of PTSD (Impact of Events Scale‐Revised).7 HRQOL was assessed by three validated questionnaires8 9 10 – Dermatology Life Quality Index,8 Skindex‐299 and EQ‐5D10 – and one specially designed for this study: SJS/TEN Survivors HRQOL (Appendix S1; see Supporting Information). The participants were also assessed by a medical interview. Descriptive statistics were calculated for variables of interest. Continuous variables were reported using means and SDs, whereas categorical variables were reported using counts and percentages. Fisher's exact test and the Wilcoxon rank sum test were used to measure associations (P < 0·05). Statistical analyses were carried out with SAS version 9.3 (SAS Institute Inc., Cary, NC, U.S.A.) and SPSS (IBM, Armonk, NY, U.S.A.). We identified 44 survivors to whom we sent introductory letters about the study. We reached 21 survivors by telephone; three refused to participate in the study and one had dementia and therefore was not included. Our cohort included 17 patients (11 female and six male) with a mean 51·6 ± 74·7 months (median 9, range 1–228) following hospital discharge due to SJS/TEN. The patients' characteristics are summarized in Table 1. The results of the psychological and HRQOL questionnaires are summarized in Table 2. Characteristics of patients with Stevens–Johnson syndrome (SJS)/toxic epidermal necrolysis (TEN) (n = 17) Values are n (%) unless stated otherwise. Characteristics of patients with Stevens–Johnson syndrome (SJS)/toxic epidermal necrolysis (TEN) (n = 17) Values are n (%) unless stated otherwise. Results of psychological and health‐related quality‐of‐life questionnaires in the 17 patients Results of psychological and health‐related quality‐of‐life questionnaires in the 17 patients We would like to highlight the important findings: 65% of participants had symptoms of post‐traumatic stress and 29% even had total scores in keeping with clinical signs of possible PTSD. Seventy‐one percent of participants had scores indicating clinically significant psychological distress. Four participants had a past psychiatric disorder, but there was no statistically significant association with scores in the psychological assessment questionnaires (P < 0·05). Surviving SJS/TEN was found to have a major impact on HRQOL according to the HRQOL questionnaires, and was also evident by the finding that only 29% of participants were employed following SJS/TEN. We found three severity markers of SJS/TEN for which we could collect information from most of the patients to analyse the associations with outcomes: total length of hospitalization, hospitalization in either burn centre or intensive care unit, and number of mucous membranes affected. The three severity markers were not found to have any statistically significant associations with psychological complications in our cohort. Unfortunately, we were not able to obtain accurate information on the SCORTEN: a severity‐of‐illness score for toxic epidermal necrolysis or body surface area assessment in the majority of patients. Despite most survivors having psychological distress and a psychiatric disorder (anxiety or depression), only four of them were assessed by a mental health professional during the period following SJS/TEN. In summary, we found major long‐term, overlooked and treatable psychological complications and decreased HRQOL among survivors following a mean 51·6 ± 74·7 months (median 9, range 1–228) after SJS/TEN. This study sheds new light on our understanding of the long‐term complications of patients who survive SJS/TEN. We need to increase awareness that patients who have survived SJS/TEN still cope with major psychological complications and decreased HRQOL, and to take a proactive approach in the assessment of their long‐term psychological complications. We advise that all patients should be offered psychological support during hospitalization, prior to discharge and throughout follow‐up, and they should be offered contact with a support group. The GHQ‐126 may be used to screen for psychological distress as it is a quick and valid instrument. Our study has limitations including the small sample size (17 participants), recall bias, a large variability in the follow‐up duration and the lack of a control group. Nevertheless, confirmation by different measures supports the reliability that survivors of SJS/TEN have severe overlooked psychological complications and low HRQOL and require long‐term medical follow‐up. We would like to thank the patients who agreed to participate in the study and the dermatologists and other health professionals who helped recruit the study participants. We would also like to thank Inbar Bizinski for her good ethics practice guidance and Dr Alex Kiss for his statistical assistance. We are grateful to the Canadian Dermatology Foundation for their funding. Funding sources: this study was supported by a grant from the Canadian Dermatology Foundation. Conflicts of interest: none declared. Appendix S1. SJS/TEN Survivors HRQOL questionnaire.

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