Evaluating Health Care Expenditure and Life Expectancy Among Patients With SJS/TEN

Patients, especially men, living with Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) exhibited a higher loss of life expectancy and lifetime healthcare expenditure compared with the general population.

Compared with the general population, patients with Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN), have a substantial loss of life expectancy (LoLE) and lifetime health care expenditure, according to study results published in the British Journal of Dermatology.

Researchers aimed to quantify the lifetime burden of SJS/TEN using data from the Taiwan National Health Insurance Research Database (NHIRD). They identified 6552 adult patients with a first diagnosis of SJS/TEN by a dermatologist in an inpatient setting between January 2008 and December 2019.

The cumulative incidence rate (CIR) of SJS/TEN was calculated for individuals aged 20 to 89 years (CIR20-89) to estimate the probability of SJS/TEN during the entire lifespan. Patients were followed from the date of first diagnosis to the last date of follow-up, their death, or December 31, 2019, whichever came first.

The lifetime risk for all patients was reduced from a cumulative incidence rate (CIR20-89) of 5.58% to 2.10%. The trend toward decreases in lifetime risk for SJS/TEN was similar in men vs women.

These results highlight the major, long-term, overlooked burden experienced by young patients with SJS/TEN.

The overall estimated mean (standard error [SE]) life expectancy postdiagnosis of SJS/TEN was 16.15 (1.05) years, and the estimated mean (SE) LoLE was 9.43 (1.06) years, compared with the sex- and age-matched reference group. Men and women with SJS/TEN had a mean (SE) LoLE of 10.74 (1.22) years and 7.69 (1.43) years, respectively.

In all age groups, life expectancy was longer in women than in men. LoLE was higher in men than in women in all age groups, except in patients 70 to 89 years of age. Being younger at the time of SJS/TEN diagnosis was generally associated with a longer life expectancy but higher LoLE and lifetime health care expenditure.

In terms of health care expenditure, the cost per life-year increased with the patients’ age at diagnosis, while the lifetime health care expenditure decreased with age at diagnosis. Men had a greater health cost per year ($4260) compared with women ($3429), and men 20 to 49 years of age had the highest lifetime health care expenditure.

Patients admitted to an intensive care unit (ICU) or burn unit had a greater LoLE (13.51±0.89 vs 8.05±1.46 years) vs patients without an ICU or burn unit admission. In addition, patients with comorbidities such as cancer, diabetes, or end-stage renal disease had substantially greater LoLE and health care expenditure per life-year vs those without comorbidities.

Study limitations include patient identification using International Classification of Diseases codes; lack of granular data on payments, which may have resulted in an underestimation of real-world costs; lack of data on healthcare expenditure among the general population; and a lack of separation between SJS diagnoses, TEN diagnoses, and SJS/TEN overlap due to a lack of data on total body surface involvement for each patient.

“These results highlight the major, long-term, overlooked burden experienced by young patients with SJS/TEN,” the researchers concluded. They added, “These data also provide a reliable real-world quantitation of the lifetime disease burden attributable to SJS/TEN, which may enable health authorities and policy makers to efficiently prioritize resource allocation to support patients with SJS/TEN and promote the development of effective strategies to minimize the associated LoLE and [health care expenditure].”

Disclosure: One of the study authors declared affiliations with biotech, pharmaceutical, and/or device companies. Please see the original reference for a full list of authors’ disclosures.


Chiu Y-M, Chiu H-Y. Lifetime risk, life expectancy, loss-of-life expectancy, and lifetime healthcare expenditure for Stevens-Johnson syndrome/toxic epidermal necrolysis in Taiwan: follow-up of a nationwide cohort from 2008 to 2019. Br J Dermatol. Published online July 10, 2023. doi:10.1093/bjd/ljad234