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.

Words cannot express my gratitude for those who have supported and guided me throughout this work. I hope that they will accept me finalizing this project as an expression of my gratitude.First and foremost, I would like to express my immense gratitude towards my main supervisor, Professor Waleed Ghanima. Over these years, it has always dazzled me how you have managed to balance pushing me when I needed it and supporting me when I needed it. Your problemsolving ability has taught me that with ambition and hard work, most of the encountered problems will be solved. With your enthusiasm and work ethic, you have shown me what it takes to finalize this project. Although, one of the busiest people I know, it has not taken you more than 24 hours to reply to my emails. That is nothing more than but truly impressive. Not only am I truly happy to have had you as my main supervisor but also I am grateful to have had the pleasure of knowing a wonderful human being like you. I thank you from the bottom of my heart.To my co-supervisor Hilde Wik, the time you have taken to meticulously revise my manuscripts and be available for further discussion has been truly helpful. The amazing discussions that we have had regarding the statistical analysis have been invaluable.A large proportion of this thesis is in the field of health-related quality of life. For those not familiar with this field, I can reveal that it is indeed a jungle. I am grateful for the expertise of my cosupervisor, Professor Lars-Petter Jelsness-Jørgensens, in this difficult and complex field. Our discussions and your comments on my manuscripts have been instrumental in the success of this thesis.I would also like to express my gratitude to my co-supervisor, Professor Per-Morten Sandset. Your professional fine-tuning of the manuscripts have taught me a great deal during this time.Moreover, your precise and direct communication regarding what need to be fixed has been much appreciated.Furthermore, I would like to thank all my co-authors, including Kristin K Utne and Joseph P Ghanima, for their contributions to the manuscripts. I thank Erik Klok for all his wise insights into this field and all his comments and encouragements. Per-Anton Sirnes I thank for his efforts Papers I-III IQuality 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 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.

Background: Polycythemia vera (PV), essential thrombocythemia (ET) and myelofibrosis (MF) are clonal hematological disorders collectively named as myeloproliferative neoplasms (MPN). Discovery of JAK2 mutation in 2005, altered WHO classification for MPN diagnosis in 2008 and availability of new treatment of MPN may have substantial effect on epidemiology of MPN. Published data on epidemiology of MPN after the discovery of JAK2 mutation and the introduction of 2008 WHO classifications for MPN, in particular on the prevalence of MPN, are scarce. We aimed to study the epidemiology of MPN in Norway and to explore the impact of JAK-2 mutation and new guidelines on the incidence of MPN using data from the Norwegian cancer registry. Method: We identified 2344 persons diagnosed with MPN from the Norwegian Cancer Registry diagnosed between 1995 and 2012. Registration of cancer in the Norwegian Cancer Registry is mandatory according to the law. We report age-adjusted incidence, prevalence and relative survival of MPN. Age adjusted incidence was reported for 2 years periods from 1995 to 2012. The prevalence was calculated according to the Norwegian population per 31.12.2011. Results: A total of 945 cases of PV was identified with a median age at diagnosis of 70 years; 471 males (50%) and 474 females (50%). The overall age-adjusted incidence rate both genders was 0.4/10⁵ in 1995-1997, 0.5/10⁵ in 1998-2000, 0.7/10⁵ in 2001-2003, 0.8/10⁵ in 2004-2007, 2008-2009 and 0.7/10⁵ in 2010-12. We identified a total of 762 cases of ET with a median age at diagnosis of 65 years, 297 males (39%) and 465 females (61%). The overall age adjusted incidence rate both genders being 0.3/10⁵ in 1995-1997 and 1998-2000, 0.5/10⁵ in 2001-2003 and 2004-2006, 0.9/10⁵ in 2007-2009 and 2010-2012. A total of 418 cases of MF was identified with a median age at diagnosis of 71 years; 243 males (58%) and 175 females (42%). Age adjusted incidence rates of both genders were 0.2/10⁵ from 1995-2006, 0.3/10⁵ in 2007-2009 and 0.5/10⁵ in 2010-2012. There were a total of 219 persons with unclassified MPN both genders,119 males (54%) and 100 females (46%) and age adjusted incidence rate varied from 0.1-0.2 to 0.1/10⁵ 1995-2012. Per 31.12.2011 the prevalence of PV, ET and MF was 9.2, 8.6 and 3.0 per 10⁵ inhabitants respectively. The survival curves for males and females for the three conditions are shown in the figure. Conclusions: This population-based study shows that the incidence of ET and MF almost doubled during the years 2007-2012 as compared to 1995-2006 as shown in the table. This increment in the incidence may possibly be related to improved diagnostics including the JAK2 mutation and the introduction of 2008 WHO-guidelines for MPN. Surprisingly, the discovery of JAK2 does not seem to have had impact on the incidence of PV as indicated by steady incidence rates since 2001. The relative survival was only slightly reduced for PV and ET, but substantially reduced for MF. Only 50% of patients with MF survive for more than 5 years. Table Incidence of MPN per 105 inhabitants during the period 1995 to 2012 in Norway 1995-97 1998-2000 2001-03 2004-06 2007-09 2010-12 PV 0.4 0.5 0.7 0.8 0.8 0.7 ET 0.3 0.3 0.5 0.5 0.9 0.9 MF 0.2 0.2 0.2 0.2 0.3 0.5 Figure showing the relative survival of PV, ET and MF Figure. showing the relative survival of PV, ET and MF Disclosures Roaldsnes: Novartis Norge AS: Research Funding. Ghanima:Novartis: Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding.