SJS(史帝文生氏－強生症候群)是服用藥物或病毒感染所引發的一種嚴重藥物過敏反應，過敏面積若小於10%定義為SJS；超過體表面積30%以上，則定義為毒性表皮溶解症TEN。若未妥善照顧與治療，可能因此致命或帶有終身殘疾；SJS/TEN就像是不定時炸彈，你我都可能發生；至目前為止台灣每年仍有2~300例的SJS/TEN患者。
其實SJS/TEN是可預防，但台灣因宣導不足，許多人都是症狀極為嚴重，經相關專業經驗醫師診斷才知是SJS/TEN。若能讓更多人知道何謂SJS/TEN，除了避免更多民眾受害，即使發病，亦能在初期警覺不至引發更嚴重的後遺症或死亡。
而SJS/TEN在亞洲的發病率比西方高，卻沒有像他們一樣的SJS/TEN推廣服務平台；在社褔需求照顧方面的文獻資料亦明顯不足。故，本研究以臺灣的SJS/TEN病友為主要研究對象，運用田野觀察法參與病友之活動、郵寄問卷及結構式訪談來了解病友需求；再以美國史帝文生氏－強生症候群基金會(SJS Foundation)之運作機制為文獻分析法之探討基礎，匯整其分析結果以了解病友們目前現況及健康照護之需求。
本研究對SJS/TEN的未來管控發展方向作事前預防、事中治療、事後照顧三方面的整理及建議。希冀各界相關單位能採納執行以有效預防用藥受害比例；以及實施健康照護管理以減少致殘及死亡的機率，並協助病友重新回復健康生活。
SJS(Stevens - Johnson syndrome) is a form of severe hypersensitivity reaction to medicine or viral infection. It is referred to as SJS when the infection is under 10% of the body; when it spreads to over 30%, it is then classified as TEN(Toxic Epidermal Necrolysis). If the patient did not receive the appropriate method of treatment, it could lead to a lifelong disability. SJS/TEN comes without warning, and it could happen to anyone at any time. Up to now there are still 2~300 cases of SJS/TEN diagnosed in Taiwan every year.
SJS/TEN is preventable; however, this condition is not yet well-known to the Taiwanese public, and many people who have severe cases of the disease only found out after professional diagnosis. If we could raise awareness to the disease, not only can we prevent its occurrence but also diagnose and treat the disease in its early stages, preventing long term complications and even deaths.
The rate of SJS/TEN in Asia is higher than that of Western countries, yet unlike them, we do not have the service platform to raise awareness to this condition. In terms of social welfare, there is a significant lack of documents concerning the care of SJS/TEN patients.
Thus, this essay studies the cases of SJS/TEN in Taiwan, using fieldwork observation, questionnaires and interviews to understand the needs of those suffering from SJS/TEN. This essay also uses reports and studies on the operation of the SJS foundation in the United States, looking at the result of their analysis to understand the situation and the needs for the health and care of these patients.
This essay analyzes and offers suggestions to the prevention, treatment and care of SJS/TEN patients. We hope that relevant institutions could take measures to prevent hypersensitive reactions by medicine and implement health and care management to reduce the rate of SJS/TEN induced death and disability.
