Coding practice in national and regional kidney biopsy registries

Dendooven, Amélie; Peetermans, Han; Helbert, Mark; Nguyen, Tri Q.; Marcussen, Niels; Nagata, Michio; Gesualdo, Loreto; Perkowska‐Ptasińska, Agnieszka; Căpuşă, Cristina; López‐Gómez, Juan M.; Geddes, Colin C.; Abdul‐Hamid, Myrurgia A.; Segelmark, Mårten; Yahya, Rosnawati; Garau, Mariela; Villanueva, Russell; Dorman, Anthony; Barbour, Sean J.; Cornet, Ronald; Hopfer, Helmut; Amann, Kerstin; Leh, Sabine; Pathologists, Kidney Biopsy Codes for

doi:10.1186/s12882-021-02365-3

Cited by 12 publications

(14 citation statements)

References 45 publications

(40 reference statements)

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“…On the other hand, granular data are much more easily collected in a single-centre setting. Second, the lack of a uniform coding system for registration of diagnoses hampers comparison between studies [ 4 ]. Third, most registries solely report the histopathological diagnosis, while the final clinical nephrological diagnosis, which integrates both clinical and histopathological information, is rarely included.…”

Section: Introductionmentioning

confidence: 99%

Epidemiology of native kidney disease in Flanders: results from the FCGG kidney biopsy registry

Laurens

Deleersnijder

Dendooven

et al. 2022

Clinical Kidney Journal

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Background The Flemish Collaborative Glomerulonephritis Group (FCGG) registry is the first population-based native kidney biopsy registry in Flanders, Belgium. In this first analysis, we report on patient demographics, frequency distribution and incidence rate of biopsied kidney disease in adults in Flanders. Methods From January 2017 until December 2019, a total of 2,054 adult first native kidney biopsies were included. A ‘double diagnostic coding’ strategy was used, in which every biopsy sample received a histopathological and final clinical diagnosis. Frequency distribution and incidence rate of both diagnoses are reported and compared with other European registries. Results The median age at biopsy was 61.1 years (IQR, 46.1-71.7), male patients were more prevalent (62.1%) and biopsy incidence rate was 129.3 per million persons per year. IgA nephropathy was the most frequently diagnosed kidney disease (355 biopsies, 17.3% of total) with a similar frequency as in previously published European registries. The frequency of tubulointerstitial nephritis (220 biopsies, 10.7%) and diabetic kidney disease (154 biopsies, 7.5%) was remarkably higher, which may be attributed to changes in disease incidence as well as biopsy practices. Discordances between histopathological and final clinical diagnoses were noted and indicate areas for improvement in diagnostic coding systems. Conclusions The FCGG registry, with its ‘double diagnostic coding’ strategy, provides useful population-based epidemiological data on a large Western-European population and allows subgroup selection for future research.

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Section: Introductionmentioning

confidence: 99%

Epidemiology of native kidney disease in Flanders: results from the FCGG kidney biopsy registry

Laurens

Deleersnijder

Dendooven

et al. 2022

Clinical Kidney Journal

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“…However, efforts to catalogue and maintain records of biopsy proven kidney disease are well established across the world 3 .…”

Section: Introductionmentioning

confidence: 99%

“…Despite this, large-scale, epidemiologic studies describing the prevalence of kidney diseases are lacking in the United States. However, efforts to catalog and maintain records of biopsy-proven kidney disease are well established across the world (3).…”

Section: Introductionmentioning

confidence: 99%

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The Cleveland Clinic Kidney Biopsy Epidemiological Project

et al. 2022

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Background: The kidney biopsy is the gold standard for the diagnosis of glomerular diseases. Large-scale, epidemiological studies describing the prevalence of kidney diseases are lacking especially in the US. We aimed to determine the spectrum of biopsy proven kidney disease across the Cleveland Clinic enterprise. Methods: We identified all patients with a native kidney biopsy performed/reviewed at the Cleveland Clinic from January 2015 to September 2021. Retrospective chart review was performed to obtain clinical and demographic characteristics. Results were stratified by age, gender, race and location to determine epidemiological trends. Results: Of over 9600 patients, we excluded transplant/donor biopsies and unavailable records, and included 4128 patients with native kidney biopsy data. The median age was 60 years, with 46.2% female patients. Self-reported racial demographics included 72.9% White, 21.7% Black, 3.1% multi-racial, and 1.6% Asian background, with 5.1% Hispanic. Common diagnoses were: FSGS (n=633, 15.3%), diabetic kidney disease (DKD) (n=602, 14.6%), IgA nephropathy (n=319, 7.7%), lupus nephritis (LN) (n=289, 7.0%), pauci-immune glomerulonephritis (n=275, 6.7%), membranous nephropathy (n=211, 5.1%), and amyloidosis (n=110, 2.7%). There were 3322 patients in Ohio, with 361 patients in Florida. Using multivariate analysis, those over 70 years were more likely to have FSGS, while those less than 45 years were more likely to have IgA Nephropathy or LN. Males were more likely to have FSGS or IgAN and less likely to have LN. Blacks were more likely to have FSGS, DKD or LN. Hispanics were more likely to have DKD. Finally, patients in Florida were more likely to have LN. There was no change in the disease spectrum prior to and during the COVID 19 pandemic. Conclusion: Our study catalogues the spectrum of biopsy proven kidney disease across the Cleveland Clinic enterprise. This lays the foundation for glomerular disease clinical trials and highlights the need for a standardized national kidney biopsy registry to bolster glomerular and kidney disease research in the United States.

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“…Abb 3. 8 Beispiel für die Anwendung des KBC(Kidney Biopsy Codes for Pathologists)-Codierungssystems bei einer Lupusnephritis (IF/IHC Immunfluoreszenz/Immunhistochemie, EM Elektronenmikroskopie)…”

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„Kidney biopsy codes for pathologists“

Leh

Dendooven

2022

Nephrologie

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ZusammenfassungMedizinische Codierungssysteme erfüllen viele Aufgaben. Generell ermöglichen sie das Auffinden, die Annotation und die Analyse von Informationen. Für die histopathologische Beurteilung von medizinischen Nierenbiopsien gibt es kein dediziertes Codierungssystem. Das Ziel des Projekts Kidney Biopsy Codes for Pathologists (KBC) ist es, ein Codierungssystem für nichtneoplastische Nierenerkrankungen zu erstellen, das die Codierung jeder Diagnose oder/und jedes mikroskopischen Schadensmusters ermöglicht. In einem Expertenworkshop wurden die Prinzipien des KBC-Systems festgelegt. Auf der Grundlage von Fachwissen und Erfahrung sowie durch die Analyse von Fachtexten wurde eine Terminologie mit Synonymen und Parent-child(Ober‑/Unterbegriff)-Beziehungen festgelegt. Anschließend wurden eine projektinterne Überprüfungsrunde und ein zweiter Expertenworkshop durchgeführt. KBC besteht derzeit aus 576 aktiven Begriffen, von denen 168 zu einer kompakten und 408 zu einer detaillierten Codierungsgruppe gehören. Die KBC-Struktur ist multihierarchisch, mit einer Krankheitskonzeptachse und einer Schadensmusterachse sowie der Möglichkeit, zusätzliche Attribute anzugeben. Die Konzepte sind nach Nierenkompartimenten gruppiert. Ein umfassendes Codierungssystem für nichtneoplastische Nierenerkrankungen ist etabliert. Das KBC-Projekt strebt eine Zusammenarbeit mit SNOMED international an, um eine definierte Untergruppe in SNOMED CT zu erstellen. Kann KBC in ein bestehendes Rahmenwerk wie SNOMED CT integriert werden, würde dies Pflege und Administration gewährleisten und einen breiten, internationalen Reviewprozess erleichtern.

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Coding practice in national and regional kidney biopsy registries

Cited by 12 publications

References 45 publications

Epidemiology of native kidney disease in Flanders: results from the FCGG kidney biopsy registry

Epidemiology of native kidney disease in Flanders: results from the FCGG kidney biopsy registry

The Cleveland Clinic Kidney Biopsy Epidemiological Project

„Kidney biopsy codes for pathologists“

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