What is the prognosis for Stevens-Johnson Syndrome (SJS)?

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Prognosis of Stevens-Johnson Syndrome

Stevens-Johnson Syndrome carries a mortality rate of less than 10%, with overall survival exceeding 90% when promptly recognized and appropriately managed, though survivors frequently face significant long-term sequelae affecting quality of life. 1

Mortality Rates by Disease Severity

The prognosis varies significantly based on the extent of epidermal detachment:

  • SJS (< 10% body surface area detachment): Mortality < 10% 1
  • SJS-TEN overlap (10-30% detachment): Mortality approximately 14-15% 1
  • TEN (> 30% detachment): Mortality rises to 25-35% 1, 2
  • Overall SJS/TEN spectrum mortality: Approximately 22% 1

Pediatric vs. Adult Outcomes

Children and young people have substantially better survival rates than adults. 1

  • Pediatric SJS mortality: 0% 1
  • Pediatric SJS-TEN overlap mortality: 2.5-3.98% 1
  • Pediatric TEN mortality: 4.2-14.73% 1
  • Adult SJS mortality: 3.1% 1
  • Adult TEN mortality: 17% 1

A critical caveat: Recurrence is more common in children (up to 18% of cases) because the precipitant is usually infection rather than drugs, which can recur despite avoidance measures. 1

Prognostic Scoring: SCORTEN

SCORTEN should be calculated within the first 24 hours of admission to predict mortality risk. 1

The SCORTEN system uses seven clinical parameters, with each parameter contributing one point:

  • Age > 40 years
  • Malignancy present
  • Heart rate > 120 bpm
  • Initial body surface area detachment > 10%
  • Serum urea > 10 mmol/L
  • Serum glucose > 14 mmol/L
  • Serum bicarbonate < 20 mmol/L

Higher SCORTEN scores correlate with increased mortality rates, and the score typically rises slightly during hospitalization (significant difference between day 1 and day 4). 1

Factors Associated with Worse Prognosis

Several factors predict increased mortality and morbidity:

  • Delayed transfer to specialist unit (associated with increased mortality) 1
  • Increasing patient age 1
  • Greater total body surface area involvement 1
  • Presence of septicemia (the most frequent cause of death) 1, 3
  • Granulocytopenia 1
  • Multiorgan failure 1

Acute Phase Complications

During the acute illness, patients face multiple life-threatening complications:

  • Septicemia (leading cause of morbidity and mortality) 3
  • Multiorgan failure 1
  • Pulmonary complications (marker of disease severity; 70% mortality in those with early bronchial epithelial necrolysis requiring mechanical ventilation) 1
  • Thermoregulatory dysfunction and hemodynamic instability 1
  • Renal impairment and liver dysfunction 1, 3

Long-Term Sequelae and Quality of Life

Even among survivors, significant long-term morbidity is common and severely impacts quality of life. 1

Common chronic complications include:

  • Ocular sequelae (most common long-term complication) 1, 3
  • Mucocutaneous complications 1, 3
  • Psychological sequelae 1
  • Urogenital strictures and dysfunction (urethral strictures, phimosis, vaginal synechiae) 1
  • Chronic respiratory problems (bronchiolitis obliterans, bronchiectasis, chronic bronchitis with approximately 40% mortality) 1
  • Nasopharyngeal, esophageal, and genital strictures 3

More than 50% of TEN survivors experience long-term reduced quality of life and decreased life expectancy. 4

Impact of Specialized Care on Outcomes

Rapid admission to a burns center or specialized intensive care unit is associated with improved survival. 1

Three studies and a systematic review demonstrate that:

  • Early transfer to specialized centers improves survival 1
  • Delayed transfer increases mortality 1
  • Multidisciplinary team management coordinated by skin failure specialists reduces complications 1

Time Course of Recovery

For survivors, the acute phase typically follows this pattern:

  • Lesions reach maximum extent 5-7 days after disease onset 1
  • Complete re-epithelialization occurs within approximately 18 days with appropriate wound management 5
  • Bronchial mucosa recovery parallels skin recovery in survivors 1

References

Guideline

Guideline Directed Topic Overview

Dr.Oracle Medical Advisory Board & Editors, 2025

Research

Toxic epidermal necrolysis and Stevens Johnson syndrome: our current understanding.

Allergology international : official journal of the Japanese Society of Allergology, 2006

Research

Current Perspectives on Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis.

Clinical reviews in allergy & immunology, 2018

Research

Improved treatment of the Stevens-Johnson syndrome.

Archives of surgery (Chicago, Ill. : 1960), 1984

Professional Medical Disclaimer

This information is intended for healthcare professionals. Any medical decision-making should rely on clinical judgment and independently verified information. The content provided herein does not replace professional discretion and should be considered supplementary to established clinical guidelines. Healthcare providers should verify all information against primary literature and current practice standards before application in patient care. Dr.Oracle assumes no liability for clinical decisions based on this content.

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