Epidemiology of Tumor-Induced Osteomalacia in Germany Based on Real World Data

TY - JOUR

T1 - Epidemiology of Tumor-Induced Osteomalacia in Germany Based on Real World Data

AU - May, Melanie

AU - Oheim, Ralf

AU - Bovy, Leonore

AU - Doess, Axel

AU - Maessen, Dirk

AU - Neukirch, Benno

AU - Norris, Raeleesha

AU - Williams, Angela

AU - Abrahamsen, Bo

N1 - © 2023. The Author(s).

PY - 2023/12

Y1 - 2023/12

N2 - Tumor-induced osteomalacia (TIO) is an ultra-rare disease caused mostly by benign tumors that secrete fibroblast growth factor-23. Because of nonspecific symptoms, the diagnostic delay is long, and therapy can be challenging. Moreover, epidemiological data on TIO are scarce owing to its rarity. Therefore, this study aimed to quantify TIO's incidence rates and prevalence in Germany. Retrospective longitudinal and cross-sectional analyses were conducted using anonymized German claims data from the statutory health insurance (SHI) database. This database, which comprises the data of approximately 5 million insurants, is a representative sample of the German population and supports national projections. As there is no unique International Statistical Classification of Diseases and Related Health Problems (ICD) code for TIO, operational categories based on different surrogates were defined to determine the prevalence and incidence rates of TIO among probable patients. This study showed that TIO has a prevalence of (documented code, advanced imaging, medication, or tumor removal) 0.187 per 100,000 persons and an incidence rate of ≤ 0.094 per 100,000 person years. This analysis provides the first epidemiological insight into German patients with TIO. Despite the general limitations associated with the analysis of SHI claims data of ultra-rare diseases, we believe that this analysis provides a sound basis for further analysis, particularly with regard to the care situation of patients with TIO.

AB - Tumor-induced osteomalacia (TIO) is an ultra-rare disease caused mostly by benign tumors that secrete fibroblast growth factor-23. Because of nonspecific symptoms, the diagnostic delay is long, and therapy can be challenging. Moreover, epidemiological data on TIO are scarce owing to its rarity. Therefore, this study aimed to quantify TIO's incidence rates and prevalence in Germany. Retrospective longitudinal and cross-sectional analyses were conducted using anonymized German claims data from the statutory health insurance (SHI) database. This database, which comprises the data of approximately 5 million insurants, is a representative sample of the German population and supports national projections. As there is no unique International Statistical Classification of Diseases and Related Health Problems (ICD) code for TIO, operational categories based on different surrogates were defined to determine the prevalence and incidence rates of TIO among probable patients. This study showed that TIO has a prevalence of (documented code, advanced imaging, medication, or tumor removal) 0.187 per 100,000 persons and an incidence rate of ≤ 0.094 per 100,000 person years. This analysis provides the first epidemiological insight into German patients with TIO. Despite the general limitations associated with the analysis of SHI claims data of ultra-rare diseases, we believe that this analysis provides a sound basis for further analysis, particularly with regard to the care situation of patients with TIO.

KW - Humans

KW - Retrospective Studies

KW - Cross-Sectional Studies

KW - Delayed Diagnosis/adverse effects

KW - Osteomalacia/epidemiology

KW - Germany/epidemiology

U2 - 10.1007/s00223-023-01148-2

DO - 10.1007/s00223-023-01148-2

M3 - SCORING: Journal article

C2 - 37980279

VL - 113

SP - 630

EP - 639

JO - CALCIFIED TISSUE INT

JF - CALCIFIED TISSUE INT

SN - 0171-967X

IS - 6

ER -