Standardization of Coding Definitions for Sickle Cell Disease
Complications: A Systematic Literature Review
Abstract
Purpose: Sickle cell disease (SCD) affects all organ systems
and is characterized by numerous acute and chronic complications and
comorbidities. Standardized codes are needed for
complications/comorbidities used in real-world evidence (RWE) studies
that rely on administrative and medical coding. This systematic
literature review was conducted to produce a comprehensive list of
complications/comorbidities associated with SCD, along with their
diagnosis codes used in RWE studies. Methods: A search in
MEDLINE and Embase identified studies published from 2016-2023. Studies
were included if they were conducted in US SCD populations and reported
complications/comorbidities and respective International Classification
of Diseases, Clinical Modification (ICD-CM) codes. All identified
complications/comorbidities and codes were reviewed by a certified
medical coding expert and hematologist. Results: Of 1,851
identified studies, 40 were included. The most reported
complications/comorbidities were stroke, acute chest syndrome, pulmonary
embolism, venous thromboembolism, vaso-occlusive crisis, and priapism.
Most of the studies used ICD-9-CM codes (n=21), while some studies used
ICD-10-CM codes (n=3) or both (n=16), depending on the study period.
Most codes reported in literature were heterogeneous across
complications/comorbidities. The medical coding expert recommended
modifications for several conditions. Conclusion: While many
studies we identified did not report their codes and were excluded from
this review, the studies with codes exhibited diverse coding
definitions. By providing a standardized set of diagnosis codes that
were reported by studies and reviewed by a coding expert and
hematologist, our review can serve as a foundation for accurately
identifying complications/comorbidities in future research, and may
reduce heterogeneity, enhance transparency, and improve reproducibility.