The venous thrombosis registry in Østfold Hospital (TROLL registry) - design and cohort description.

Purpose: The incidence of venous thromboembolism (VTE) is expected to increase over the next decades, further increasing its substantial impact on patients and health care resources. Registries have the benefit of reporting real-world data without excluding clinically important subgroups. Our aim was to describe a Norwegian VTE registry and to provide descriptive data on the population and management. Registry Population: The Venous Thrombosis Registry in Østfold Hospital (TROLL) is an ongoing registry of consecutive patients diagnosed with, treated, and/or followed up for VTE at Østfold Hospital, Norway, since 2005. Baseline and follow-up data, including demographics, clinical features, risk factors, diagnostic procedures, classification of VTE, and treatment were collected during hospitalization, and at scheduled outpatient visits. Findings to Date: From January 2005 to June 2021, 5037 patients were eligible for research in TROLL. Median age was 67 years (interquartile range, 55-77), and 2622 (52.1%) were male. Of these, 2736 (54.3%) had pulmonary embolism (PE), 2034 (40.4%) had deep vein thrombosis (DVT), and 265 (5.3%) had upper-extremity DVT or splanchnic or cerebral sinus vein thrombosis. In total, 2330 (46.3%) were classified as unprovoked VTE, and 1131 (22.5%) had cancer. Direct oral anticoagulants were the most frequent therapeutic agents (39.3%) followed by low-molecular-weight heparins (30.4%) and vitamin K antagonists (30.3%). Outpatient treatment for PE increased from 4% in 2005 to 23% in 2019. Future Plans: TROLL is a population-based ongoing registry that represents a valuable source of real-world data that will be used for future research on the management and outcomes of VTE.

Myeloproliferative neoplasms: trends in incidence, prevalence and survival in Norway.

BACKGROUND: Polycythemia vera (PV), essential thrombocythemia (ET) and myelofibrosis (MF) are clonal disorders collectively named as myeloproliferative neoplasms (MPN). Published data on epidemiology of MPN after the discovery of the JAK2 mutation and the 2008 WHO classifications are scarce. We aimed to study the incidence rates, prevalence and survival of MPN in Norway during the period 1993-2012. METHOD: We identified 2453 persons diagnosed with MPN from the Cancer Registry of Norway between 1993 and 2012. We report age-adjusted incidence rates, prevalence, relative survival and standardised mortality rates. RESULTS: The overall age-adjusted yearly incidence rate of PV increased from 0.4/105 to 0.7/105, ET increased from 0.3/105 to 1.0/105 and MF from 0.2/105 to 0.5/105. Prevalence of PV, ET and MF was 9.2, 8.6 and 3.0 per 105 inhabitants, respectively. The five-year relative survival (RS) of ET and PV was slightly reduced with no improvement. The five-year RS of MF was 58.1% (2008-2012). Standardised mortality rate (SMR) was 1.9 (95% CI 1.2 - 2.7). CONCLUSIONS: The incidence rates of ET, PV and MF doubled and tripled during the years 2007-2012 as compared to 1995-2006. This increment in incidence rates may be related to identification of the JAK2 mutation and the derived 2008 WHO guidelines for MPN. The RS was only slightly reduced in PV and ET, but was substantially reduced in MF.

Quality of life after pulmonary embolism: first cross-cultural evaluation of the pulmonary embolism quality-of-life (PEmb-QoL) questionnaire in a Norwegian cohort.

PURPOSE: The aim of the current study was to translate and test the psychometrical properties of the disease-specific pulmonary embolism quality-of-life questionnaire (PEmb-QoL). METHODS: Patients with a prior history of pulmonary embolism (PE) were identified from the thrombosis registry at Østfold Hospital Trust, Fredrikstad, Norway. All eligible patients were asked to complete the generic EuroQol 5-dimension (EQ-5D) QoL questionnaire as well as the disease-specific PEmb-QoL at baseline and after 2 weeks. Construct validity was tested using principal component factor analysis. Criterion validity was tested using Spearman's correlation coefficients (rho) between EQ-5D and PEmb-QoL. Internal consistency reliability was calculated using Cronbach's alpha coefficient, while test-retest reliability was calculated using the intra-class correlation coefficients (ICC). RESULTS: A total of 213 participants had complete datasets and were included in further analyses. Factor analysis with varimax rotation yielded six factors explaining 71% of the cumulative variance. Cronbach's alpha coefficient was found to be 0.94, indicating a very good intercorrelation of items. Of the 213 participants, 145 (68%) completed the questionnaire a second time. The ICC ranged from 0.75 to 0.86, indicating good test-retest reliability. All factors were found significant with p values <0.001. The criterion validity of the PEmb-QoL was confirmed through good correlation with other similar health-related quality-of-life constructs in the EQ-5D. CONCLUSIONS: Findings of the current study indicate that Norwegian version of the PEmb-QoL is both valid and reliable, thus representing an important supplement in subjective outcomes measurement among patients sustaining PE.