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Updates in SJS/TEN: collaboration, innovation, and community.

ABSTRACT: Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis (SJS/TEN) is a predominantly drug-induced disease, with a mortality rate of 15-20%, that engages the expertise of multiple disciplines: dermatology, allergy, immunology, clinical pharmacology, burn surgery, ophthalmology, urogynecology, and psychiatry. SJS/TEN has an incidence of 1-5/million persons per year in the United States, with even higher rates globally. One of the challenges of SJS/TEN has been developing the research infrastructure and coordination to answer questions capable of transforming clinical care and leading to improved patient outcomes. SJS/TEN 2021, the third research meeting of its kind, was held as a virtual meeting on August 28-29, 2021. The meeting brought together 428 international scientists, in addition to a community of 140 SJS/TEN survivors and family members. The goal of the meeting was to brainstorm strategies to support the continued growth of an international SJS/TEN research network, bridging science and the community. The community workshop section of the meeting focused on eight primary themes: mental health, eye care, SJS/TEN in children, non-drug induced SJS/TEN, long-term health complications, new advances in mechanisms and basic science, managing long-term scarring, considerations for skin of color, and COVID-19 vaccines. The meeting featured several important updates and identified areas of unmet research and clinical need that will be highlighted in this white paper.

SUBMITTER: Marks ME

PROVIDER: S-EPMC10600400 | biostudies-literature | 2023

REPOSITORIES: biostudies-literature

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Updates in SJS/TEN: collaboration, innovation, and community.

Marks Madeline E ME Botta Ramya Krishna RK Abe Riichiro R Beachkofsky Thomas M TM Boothman Isabelle I Carleton Bruce C BC Chung Wen-Hung WH Cibotti Ricardo R RR Dodiuk-Gad Roni P RP Grimstein Christian C Hasegawa Akito A Hoofnagle Jay H JH Hung Shuen-Iu SI Kaffenberger Benjamin B Kroshinsky Daniela D Lehloenya Rannakoe J RJ Martin-Pozo Michelle M Micheletti Robert G RG Mockenhaupt Maja M Nagao Keisuke K Pakala Suman S Palubinsky Amy A Pasieka Helena B HB Peter Jonathan J Pirmohamed Munir M Reyes Melissa M Saeed Hajirah N HN Shupp Jeffery J Sukasem Chonlaphat C Syu Jhih Yu JY Ueta Mayumi M Zhou Li L Chang Wan-Chun WC Becker Patrice P Bellon Teresa T Bonnet Kemberlee K Cavalleri Gianpiero G Chodosh James J Dewan Anna K AK Dominguez Arturo A Dong Xinzhong X Ezhkova Elena E Fuchs Esther E Goldman Jennifer J Himed Sonia S Mallal Simon S Markova Alina A McCawley Kerry K Norton Allison E AE Ostrov David D Phan Michael M Sanford Arthur A Schlundt David D Schneider Daniel D Shear Neil N Shinkai Kanade K Tkaczyk Eric E Trubiano Jason A JA Volpi Simona S Bouchard Charles S CS Divito Sherrie J SJ Phillips Elizabeth J EJ

Frontiers in medicine 20231011

Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis (SJS/TEN) is a predominantly drug-induced disease, with a mortality rate of 15-20%, that engages the expertise of multiple disciplines: dermatology, allergy, immunology, clinical pharmacology, burn surgery, ophthalmology, urogynecology, and psychiatry. SJS/TEN has an incidence of 1-5/million persons per year in the United States, with even higher rates globally. One of the challenges of SJS/TEN has been developing the research infrastructure an ...[more]

PMID: 37901413

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Project description:BackgroundStevens-Johnson syndrome (SJS) and Toxic Epidermal Necrolysis (TEN), caused by allopurinol therapy, are strongly associated with the human leukocyte antigen (HLA), HLA-B*5801. Identification of HLA-B*5801 genotype before prescribing allopurinol offers the possibility of avoiding allopurinol-induced SJS/TEN. As there is a paucity of evidence about economic value of such testing, this study aims to determine the cost-effectiveness of HLA-B*5801 testing compared with usual care (no genetic testing) before allopurinol administration in Thailand.Methods and findingA decision analytical and Markov model was used to estimate life time costs and outcomes represented as quality adjusted life years (QALYs) gained. The model was populated with relevant information of the association between gene and allopurinol-induced SJS/TEN, test characteristics, costs, and epidemiologic data for Thailand from a societal perspective. Input data were obtained from the literature and a retrospective database analysis. The results were expressed as incremental cost per QALY gained. A base-case analysis was performed for patients at age 30. A series of sensitivity analyses including scenario, one-way, and probabilistic sensitivity analyses were constructed to explore the robustness of the findings. Based on a hypothetical cohort of 1,000 patients, the incremental total cost was 923,919 THB (USD 29,804) and incremental QALY was 5.89 with an ICER of 156,937.04 THB (USD 5,062) per QALY gained. The cost of gout management, incidence of SJS/TEN, case fatality rate of SJS/TEN, and cost of genetic testing are considered very influential parameters on the cost-effectiveness value of HLA-B*5801 testing.ConclusionsThe genetic testing for HLA-B*5801 before allopurinol administration is considered a highly potential cost-effective intervention in Thailand. The findings are sensitive to a number of factors. In addition to cost-effectiveness findings, consideration of other factors including ethical, legal, and social implications is needed for an informed policy decision making.

Dataset Information

Updates in SJS/TEN: collaboration, innovation, and community.

Publications

Updates in SJS/TEN: collaboration, innovation, and community.

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