Identification of Stevens-Johnson syndrome and toxic epidermal necrolysis in electronic health record databases.
BACKGROUND
Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) carry a high mortality risk. While identifying clinical and genetic risk factors for these conditions has been hindered by their rarity, large electronic health databases hold promise for identifying large numbers of cases for study, especially with the introduction in 2008 of ICD-9 codes more specific for these conditions.


OBJECTIVE
The objective of this study is to estimate the validity of ICD-9 codes for ascertaining SJS/TEN in 12 collaborating research units in the USA, covering almost 60 million lives.


METHODS
From the electronic databases at each site, we ascertained potential cases of SJS/TEN using ICD-9 codes. At five sites, a subset of medical records was abstracted and standardized criteria applied by board-certified dermatologists to adjudicate diagnoses. Multivariate logistic regression was used to identify factors independently associated with validated SJS/TEN cases.


RESULTS
A total of 56 591 potential cases of SJS/TEN were identified. A subset of 276 charts was selected for adjudication and 39 (of the 276) were confirmed as SJS/TEN. Patients with the ICD-9 codes introduced after 2008 were more likely to be confirmed as cases (OR 3.32; 95%CI 0.82, 13.47) than those identified in earlier years. Likelihood of case status increased with length of hospitalization. Applying the probability of case status to the 56 591 potential cases, we estimated 475-875 to be valid SJS/TEN cases.


CONCLUSIONS
Newer ICD-9 codes, along with length of hospitalization, identified patients with a high likelihood of SJS/TEN. This is important for identification of subjects for future pharmacogenomics studies.
University of Tennessee Health Sciences Center, Memphis, TN, USA.|Kaiser Permanente Georgia, Atlanta, GA, USA.
Robert L
RL
Davis
Kaiser Permanente Georgia, Atlanta, GA, USA.
Mia A
MA
Gallagher
Kaiser Permanente Northern California, Oakland, CA, USA.
Maryam M
MM
Asgari
Henry Ford Hospital, Detroit, MI, USA.
Melody J
MJ
Eide
University of Pennsylvania, Philadelphia, PA, USA.
David J
DJ
Margolis
Kaiser Permanente Southern California, Pasadena, CA, USA.
Eric
E
Macy
Marshfield Clinic Research Foundation, Marshfield, WI, USA.
James K
JK
Burmester
Healthcore, Wilmington, DE, USA.
Nandini
N
Selvam
Geisinger Health System, Danville, PA, USA.
Joseph A
JA
Boscarino
Kaiser Permanente Georgia, Atlanta, GA, USA.
Lee F
LF
Cromwell
Kaiser Permanente Colorado, Denver, CO, USA.
Heather S
HS
Feigelson
Kaiser Permanente Northwest, Portland, OR, USA.
Jennifer L
JL
Kuntz
HealthPartners Institute for Education and Research, Minneapolis, MN, USA.
Pamala A
PA
Pawloski
Group Health Research Institute, Seattle, WA, USA.
Robert B
RB
Penfold
Kaiser Permanente Colorado, Denver, CO, USA.
Marsha A
MA
Raebel
Healthcore, Wilmington, DE, USA.
Gayathri
G
Sridhar
Harvard Pilgrim Health Care, Boston, MA, USA.
Ann
A
Wu
Food and Drug Administration, Silver Spring, MD, USA.
Lois A
LA
La Grenade
Food and Drug Administration, Silver Spring, MD, USA.
Michael A
MA
Pacanowski
Food and Drug Administration, Silver Spring, MD, USA.
Simone P
SP
Pinheiro
D016208:Databases, Factual / Q000706:statistics & numerical data*; D057286:Electronic Health Records / Q000706:statistics & numerical data*; D005240:Feasibility Studies; D006760:Hospitalization / Q000706:statistics & numerical data; D006801:Humans; D038801:International Classification of Diseases; D016015:Logistic Models; D017891:Pharmacoepidemiology; D013262:Stevens-Johnson Syndrome / Q000175:diagnosis / Q000453:epidemiology*; D014481:United States / Q000453:epidemiology
Stevens-Johnson syndrome; pharmacoepidemiology; toxic epidermal necrolysis