Pheochromocytoma in Denmark during 1977-2016: validating diagnosis codes and creating a national cohort using patterns of health registrations

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Pheochromocytoma in Denmark during 1977-2016: validating diagnosis codes and creating a national cohort using patterns of health registrations. / Ebbehoj, Andreas; Jacobsen, Sarah Forslund; Trolle, Christian; Robaczyk, Maciej Grzegorz; Rasmussen, Åse Krogh; Feldt-Rasmussen, Ulla; Thomsen, Reimar Wernich; Poulsen, Per Løgstrup; Stochholm, Kirstine; Søndergaard, Esben.

In: Clinical epidemiology, Vol. 10, 13.06.2018, p. 683-695.

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@article{d89538bc0674458a854f758f45db57c1,
title = "Pheochromocytoma in Denmark during 1977-2016: validating diagnosis codes and creating a national cohort using patterns of health registrations",
abstract = "Background: Pheochromocytoma and catecholamine-secreting paraganglioma (PPGL) are rare but potentially life-threatening tumors. We aimed to validate diagnosis codes for PPGL in the Danish National Patient Registry, the Danish National Pathology Registry, and the Danish Registry of Causes of Death and to create a national cohort of incident PPGL patients by linking these three registries. Patients and methods: We obtained data from the three abovementioned registries for all individuals registered with pheochromocytoma or catecholamine hypersecretion in Denmark during 1977–2016 (average population 5.30 million). We then reviewed health records for all individuals living in the North Denmark Region and Central Denmark Region (average population 1.75 million) to validate the diagnosis of PPGL. We tested a number of algorithms for accurately identifying true cases of PPGL to maximize positive predictive values (PPVs) andcompleteness. The best algorithm was subsequently validated in an external sample. Results: We identified 2626 individuals with a PPGL diagnosis code in Denmark, including 787 (30.0{\%}) in the North Denmark Region and Central Denmark Region. In this subsample, we retrieved the health records of 771/787 (98.0{\%}) individuals and confirmed 198 incident PPGL patients (25.3{\%}). The PPV of PPGL diagnosis codes was 21.7{\%} in the Danish National Patient Registry, 50.0{\%} in the Danish Registry of Causes of Death, and 79.5{\%} in the Danish National Pathology Registry. By combining patterns of registrations in the three registries, wecould increase the PPV to 93.1{\%} (95{\%} confidence interval [CI]: 88.5–96.3) and completeness to 88.9{\%} (95{\%} CI: 83.7–92.9), thus creating a national PPGL cohort of 588 patients. PPV for the optimal algorithm was 95.3{\%} (95{\%} CI: 88.5–98.7) in the external validation sample. Conclusion: Diagnosis codes for pheochromocytoma had low PPV in several individual health registries. However, with a combination of registries we were able to identify a near-complete national cohort of PPGL patients in Denmark, as a valuable source for epidemiological research.",
keywords = "registry-based research, International Classification of Diseases, ICD, SNOMED, hospital register diagnoses, pathology register, cause of death register, Pheochromocytoma",
author = "Andreas Ebbehoj and Jacobsen, {Sarah Forslund} and Christian Trolle and Robaczyk, {Maciej Grzegorz} and Rasmussen, {{\AA}se Krogh} and Ulla Feldt-Rasmussen and Thomsen, {Reimar Wernich} and Poulsen, {Per L{\o}gstrup} and Kirstine Stochholm and Esben S{\o}ndergaard",
year = "2018",
month = "6",
day = "13",
doi = "10.2147/CLEP.S163065",
language = "English",
volume = "10",
pages = "683--695",
journal = "Clinical Epidemiology",
issn = "1179-1349",
publisher = "Dove Medical Press Ltd.(Dovepress)",

}

RIS

TY - JOUR

T1 - Pheochromocytoma in Denmark during 1977-2016: validating diagnosis codes and creating a national cohort using patterns of health registrations

AU - Ebbehoj, Andreas

AU - Jacobsen, Sarah Forslund

AU - Trolle, Christian

AU - Robaczyk, Maciej Grzegorz

AU - Rasmussen, Åse Krogh

AU - Feldt-Rasmussen, Ulla

AU - Thomsen, Reimar Wernich

AU - Poulsen, Per Løgstrup

AU - Stochholm, Kirstine

AU - Søndergaard, Esben

PY - 2018/6/13

Y1 - 2018/6/13

N2 - Background: Pheochromocytoma and catecholamine-secreting paraganglioma (PPGL) are rare but potentially life-threatening tumors. We aimed to validate diagnosis codes for PPGL in the Danish National Patient Registry, the Danish National Pathology Registry, and the Danish Registry of Causes of Death and to create a national cohort of incident PPGL patients by linking these three registries. Patients and methods: We obtained data from the three abovementioned registries for all individuals registered with pheochromocytoma or catecholamine hypersecretion in Denmark during 1977–2016 (average population 5.30 million). We then reviewed health records for all individuals living in the North Denmark Region and Central Denmark Region (average population 1.75 million) to validate the diagnosis of PPGL. We tested a number of algorithms for accurately identifying true cases of PPGL to maximize positive predictive values (PPVs) andcompleteness. The best algorithm was subsequently validated in an external sample. Results: We identified 2626 individuals with a PPGL diagnosis code in Denmark, including 787 (30.0%) in the North Denmark Region and Central Denmark Region. In this subsample, we retrieved the health records of 771/787 (98.0%) individuals and confirmed 198 incident PPGL patients (25.3%). The PPV of PPGL diagnosis codes was 21.7% in the Danish National Patient Registry, 50.0% in the Danish Registry of Causes of Death, and 79.5% in the Danish National Pathology Registry. By combining patterns of registrations in the three registries, wecould increase the PPV to 93.1% (95% confidence interval [CI]: 88.5–96.3) and completeness to 88.9% (95% CI: 83.7–92.9), thus creating a national PPGL cohort of 588 patients. PPV for the optimal algorithm was 95.3% (95% CI: 88.5–98.7) in the external validation sample. Conclusion: Diagnosis codes for pheochromocytoma had low PPV in several individual health registries. However, with a combination of registries we were able to identify a near-complete national cohort of PPGL patients in Denmark, as a valuable source for epidemiological research.

AB - Background: Pheochromocytoma and catecholamine-secreting paraganglioma (PPGL) are rare but potentially life-threatening tumors. We aimed to validate diagnosis codes for PPGL in the Danish National Patient Registry, the Danish National Pathology Registry, and the Danish Registry of Causes of Death and to create a national cohort of incident PPGL patients by linking these three registries. Patients and methods: We obtained data from the three abovementioned registries for all individuals registered with pheochromocytoma or catecholamine hypersecretion in Denmark during 1977–2016 (average population 5.30 million). We then reviewed health records for all individuals living in the North Denmark Region and Central Denmark Region (average population 1.75 million) to validate the diagnosis of PPGL. We tested a number of algorithms for accurately identifying true cases of PPGL to maximize positive predictive values (PPVs) andcompleteness. The best algorithm was subsequently validated in an external sample. Results: We identified 2626 individuals with a PPGL diagnosis code in Denmark, including 787 (30.0%) in the North Denmark Region and Central Denmark Region. In this subsample, we retrieved the health records of 771/787 (98.0%) individuals and confirmed 198 incident PPGL patients (25.3%). The PPV of PPGL diagnosis codes was 21.7% in the Danish National Patient Registry, 50.0% in the Danish Registry of Causes of Death, and 79.5% in the Danish National Pathology Registry. By combining patterns of registrations in the three registries, wecould increase the PPV to 93.1% (95% confidence interval [CI]: 88.5–96.3) and completeness to 88.9% (95% CI: 83.7–92.9), thus creating a national PPGL cohort of 588 patients. PPV for the optimal algorithm was 95.3% (95% CI: 88.5–98.7) in the external validation sample. Conclusion: Diagnosis codes for pheochromocytoma had low PPV in several individual health registries. However, with a combination of registries we were able to identify a near-complete national cohort of PPGL patients in Denmark, as a valuable source for epidemiological research.

KW - registry-based research

KW - International Classification of Diseases

KW - ICD

KW - SNOMED

KW - hospital register diagnoses

KW - pathology register

KW - cause of death register

KW - Pheochromocytoma

U2 - 10.2147/CLEP.S163065

DO - 10.2147/CLEP.S163065

M3 - Journal article

VL - 10

SP - 683

EP - 695

JO - Clinical Epidemiology

JF - Clinical Epidemiology

SN - 1179-1349

ER -