Abstract
Breast cancer patients commonly present with comorbidities which are known to influence treatment decisions and survival. We aim to examine agreement between self-reported and register-based medical records (National Patient Register [NPR]). Ascertainment of nine conditions, using individually-linked data from 64,961 women enrolled in the Swedish KARolinska MAmmography Project for Risk Prediction of Breast Cancer (KARMA) study. Agreement was assessed using observed proportion of agreement (overall agreement), expected proportion of agreement, and Cohen’s Kappa statistic. Two-stage logistic regression models taking into account chance agreement were used to identify potential predictors of overall agreement. High levels of overall agreement (i.e. ≥86.6%) were observed for all conditions. Substantial agreement (Cohen’s Kappa) was observed for myocardial infarction (0.74), diabetes (0.71) and stroke (0.64) between self-reported and NPR data. Moderate agreement was observed for preeclampsia (0.51) and hypertension (0.46). Fair agreement was observed for heart failure (0.40) and polycystic ovaries or ovarian cysts (0.27). For hyperlipidemia (0.14) and angina (0.10), slight agreement was observed. In most subgroups we observed negative specific agreement of >90%. There is no clear reference data source for ascertainment of conditions. Negative specific agreement between NPR and self-reported data is consistently high across all conditions.
Highlights
Cancers including breast cancer commonly present with one or more additional medical conditions, hereafter referred to as comorbidities
Www.nature.com/scientificreports reports it) (85–95% in general) but lower sensitivity for many diagnoses in the NPR9
We focused on common comorbidities such as hypertension, hyperlipidemia, heart failure, myocardial infraction, angina, stroke and type I or II diabetes
Summary
Cancers including breast cancer commonly present with one or more additional medical conditions, hereafter referred to as comorbidities. Information on comorbidities can be ascertained through multiple data sources including patient self-reports, medical record abstraction and disease registries[7]. National registers such as the National Patient Register (NPR) in Sweden are goldmines for epidemiological research due to their rich and long-term data on various health conditions and procedures[8]. Www.nature.com/scientificreports reports it) (85–95% in general) but lower sensitivity (i.e. the probability of inpatient records reporting the condition given that the condition is present) for many diagnoses in the NPR9 Comorbid conditions such as hypertension and adulthood onset diabetes are almost exclusively managed in primary care and are not well-captured in the register-based hospital records[10]. We examined concordance between self-reported and NPR data on several women’s health problems which are less studied, such as preeclampsia and polycystic ovaries or ovarian cysts
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