Table 1.

SJS survivorship and patient perspectives.

Themes	Community perspective	Physician perspective
Mental health	-Follow up care -Bridge between hospital care and follow-up care -Increase healthcare provider education for SJS/TEN PTSD -Address mental health and changes immediately after SJS/TEN -Assist through the recovery process -Implement mandatory mental wellness checks before discharge from the hospital and beyond -Address survivor’s guilt -Improve mental health/grief counseling for loved ones who lost an SJS/TEN patients -Provide grief counseling for your “lost life” and changed life -Discuss financial burden -Address low self-esteem	-Understand the psychological impact, and related long term health complications -Conduct qualitative and quantitative research to implicate in clinical care -Understand how the disease condition affects the individual (psychologically, interpersonally, vocationally, and overall quality of life) -Provide realistic expectations about challenges during hospitalization and after discharge -Provide a multidisciplinary support team (social work, psychiatry, psychology) -Provide proper discharge document with a list of medications -Ensure post-discharge follow-ups and counseling with survivors
Long-term health complications	-Improve education for healthcare professionals on residual side effects -Recognize SJS/TEN side effects -Improve treatment for all side effects (more than only eye care, esophageal care, skin care, live care, reproductive care, oral care, dental care) -Increase access to healthcare professionals who specialize with SJS/TEN patients (both in-person and telehealth appointments) -Increase/improve physician response time -Ease transfer of patient records -Develop and utilize an SJS/TEN identification checklist -Implement the use of educational materials by doctors (flyers, brochures, posters)	-Understand the various long-term health-related complications and their effects -Understand complications vary based on the severity of cases -Recognize that treatment options will change according to the case presentation -Increase collaborative research projects to study cases post SJS/TEN -Prioritize long-term follow-up of cases -Provide advice on referral centers -Standardize health checkups to identify complications -Increase collaborative and coordinative work among clinicians -Provide proper documentation for future referrals
Eye care	-Treatment during the acute stage -Treatment post SJS/TEN -Prompt treatment and diagnosis -Education on eye care treatment -Contact an eye care specialist -Aftercare and follow-up appointments	-Understanding treatment during acute stage is critical -Provide proper examination and care by specialists -Recognize treatment options should not be limited to topical steroids. Surgical procedures need to be considered when appropriate -Plan on decreasing the risk of infection and vision loss -Increase knowledge of advanced surgical and sutureless procedures
Long-term scarring	-Awareness of how scarring impacts SJS/TEN survivors (skin, eyes, organs) -How scarring changes over time (thickening) -Improved education for healthcare professionals -Eliminate the use of “Rare” to classify SJS/TEN -Educate patients post SJS/TEN about scarring -Prioritize early diagnosis -Provide second opinions from healthcare providers who have treated SJS/TEN -Implement mandatory certification on SJS/TEN and retraining -Provide examples of SJS/TEN scaring (at all stages from early identification)	-Research best practices to identify, early diagnose and treat SJS/TEN -Implement standard treatment protocols -Confirm diagnosis through histology -Determine specific signs that occur in the presence of certain medications -Have evidence-based studies to determine the casual drugs and treatment options
Children with no identifiable drug cause	-Bring awareness that over-the-counter products are medications -Create awareness about infections causing SJS/TEN and avoid accusing medications used to treat the first symptoms of SJS/TEN -Provide for mental health concerns -Look at genetic factors (HLA-b1502) -Create screenings	-Awareness and documentation of the causal factors -Knowledge of the possibility of life-threatening GI tract involvement when treating cases of SJS/TEN -Consider the usage of steroids and enteric feeding
Special considerations in skin of color	-Identify SJS/TEN in the acute stage -Acknowledge the difference between the appearance of SJS/TEN in the skin of color -Awareness of hyperpigmentation -Lack of visible blisters at the acute stage -Consider low visibility (lack of redness) of SJS/TEN presentation -Improve time to diagnosis -Improve education for healthcare providers of SJS/TEN in the skin of color -Implement a specific checklist for skin of color (purple-looking skin vs. red-looking skin) for identification	-Educate on dyspigmentation, skin changes, and different types of scarring -Understand disease effect on all types of skin cells -Change of practice: start counseling at the bedside -Improve interactions with patients, survivors, and families -Improve pharmacist education on common drug allergies -Improve response to queries or concerns of survivors -Provide detailed discharge instructions with frequent concerns (what products to use on skin, etc.)
Scientific advances in SJS/TEN	-Genetic testing -More research studies and increased patient/survivor participation -Gaining the patient perspective -Spread knowledge/awareness of new SJS/TEN treatments -Get more funding for SJS/TEN research -Bring more awareness of SJS/TEN -Eliminate the use of the word RARE -Increase box warnings -Increase funding to assist patients with SJS/TEN who are not financially stable	-Strengthen experimental models -Predict possible risks and validate signals -Capture cases, specimens, interoperable repositories -Promote consistency and quality in research methods -Use pharmacogenomics for drug safety -Integrate distributed databases/biobanks could enable biomarker discovery/validation, test monitoring/utility -Implement multicenter investigations to further understand management and treatment
Safety of COVID-19 vaccines	-Ensure that patients/survivors understand that COVID-19 vaccines are safe, including risks of COVID-19 vs. risk of vaccine -Develop education on potential complications of COVID-19 as an SJS/TEN survivor	-Answer vaccine-related queries-Educate on different responses to the vaccine -Ensure patients it is safe to get the COVID-19 vaccine -Address the misconceptions, hesitancy, and fear of getting the vaccine