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Background and Purpose: The Swedish Lymphoma Register (SLR) was initiated in the year 2000 with the aim to monitor quality of care in diagnostics, treatment and outcome of all lymphomas diagnosed nationally among adults. Here, we present the first systematic validation of SLR records as a basis for improved register quality and patient care., Patients and Methods: We evaluated timeliness and completeness of register records among patients diagnosed with lymphoma in the SLR (n = 16,905) compared with the National Cancer Register for the period 2013-2020. Comparability was assessed through evaluation of coding routines against national and international guidelines. Accuracy of 42 variables was evaluated through re-abstraction of data from medical records among 600 randomly selected patients diagnosed in 2016-2017 and treated across all six Swedish healthcare regions.  Results: Completeness was high, >95% per year for the period 2013-2018, and >89% for 2019-2020 compared to the National Cancer Register. One in four patients was registered within 3 months, and 89.9% within 2 years of diagnosis. Registration instructions and coding procedures followed the prespecified guidelines. Missingness was generally low (<5%), but high for occasional variables, for example, those describing maintenance and consolidative treatment. Exact agreement of categorical variables was high overall (>80% for 24/34 variables), especially for treatment-related data (>80% for 17/19 variables)., Interpretation: Completeness and accuracy are high in the SLR, while timeliness could be improved. Finetuning of variable registration guided by this validation can further improve reliability of register reports and advance service to lymphoma patients and health care in the future.

Background: Descriptive data on late effects associated with castrate-resistant prostate cancer (CRPC) are sparse. We aimed to define the timing and incidence of cardiovascular disease (CVD), fractures, and diabetes in a patient population with CRPC., Methods: In the population-based STHLM0 cohort 1464 men with CRPC were identified and matched with three men free from prostate cancer (PC) in the Stockholm region of Sweden. Kaplan-Meier estimates of net survival were used to describe time to CVD, fracture, and diabetes. Cox regression was used to compare incidence rates (IRRs) for the respective late effects. Cumulative incidence analyses of late effects in the presence of the competing risk of death were performed to estimate absolute risks., Results: The Kaplan Meier estimates demonstrated a higher net probability for CVD, fracture, and diabetes among men diagnosed with CRPC compared to the matched comparators. The IRRs were 1.94 (95% CI: 1.79-2.12) for CVD, 2.08 (95% CI: 1.70-2.53) for fracture, and 2.00 (95% CI: 1.31-3.05) for diabetes, respectively, comparing men diagnosed with CRPC to men free from PC. The cumulative incidence of CVD at 12 months of follow-up was higher in men diagnosed with CRPC compared to healthy controls regardless of age with a difference in cumulative incidence being 0.20 for men aged <65 and 0.11 for men aged >84., Conclusions: In this cohort, the incidence of CVD was significantly higher among men with CRPC compared to healthy controls. Despite having this end-stage disease this finding proves that clinicians must recognize this late effect in men diagnosed with CRPC to improve preventive actions. These men did not have a higher absolute risk of fractures and diabetes after accounting for deaths due to any cause compared to healthy controls.

Background: Overall, women have better cancer-specific survival than men following haematological malignancies. The effect of reproductive factors on prognosis in women remains unknown and population-based studies are needed., Material and Methods: A nationwide cohort of 21,237 Swedish women with a recorded haematological malignancy at ages 18-69 years was identified in the Swedish Cancer Register 1970-2018. Pre-diagnosis childbirths for each woman were linked to the Swedish Multigeneration Register. Net survival and excess hazard ratios for parity, age at first birth, time since the latest birth, and sex of offspring were estimated using flexible parametric models adjusted for age, year, and educational level., Results: In unadjusted analyses, parity ( p  = 0.0012) and high age at first birth ( p  < 0.0001) were associated with better survival. After co-adjustments for reproductive factors and confounders, the associations were attenuated. The adjusted association with parity was mainly observed among women aged above 40 years at diagnosis ( p  = 0.0033). The associations with reproductive factors were non-significant across subtypes of haematological malignancy. There was a tendency of higher excess mortality for an increasing number of boys compared to girls, although only significant for women with three or more children ( p  = 0.0126)., Conclusion: Reproductive factors were in part associated with survival following diagnosis of a haematological malignancy. However, the effect sizes were small with inconsistent association patterns, and thus reproductive factors may only partly contribute to the survival advantage of women over men.

Background: Hodgkin lymphoma (HL) treatment protocols for children, adolescents and young adults traditionally differ, but the biological and clinical justification for this remains uncertain., Material and Methods: We compared age-dependent clinical presentation and treatment and outcome for 1072 classical HL patients 0-24 years diagnosed in Denmark (1990-2010) and Sweden (1992-2009) in pediatric (n = 315, Denmark <15 years, Sweden <18 years) or adult departments (n = 757). Distribution of clinical characteristics was assessed with Pearson's chi 2 -test and Mantel-Haenszel trend test. The Kaplan-Meier method was used for survival analyses. Hazard ratios (HR) were used to compare the different treatment groups and calculated using Cox regression., Results: Children (0-9 years) less often presented with advanced disease than adolescents (10-17 years) and young adults (18-24 years) (stage IIB-IV: children 32% vs. adolescents 50%, and adults 55%; p < .005). No variation in overall survival (OS) was seen between pediatric and adult departments or by country. Danish pediatric patients received radiotherapy (36%) less frequently than Swedish pediatric patients (71%) (p < .0001). Ten-year event-free survival (EFS) was lower among Danish pediatric patients (0-14 years) (0.79; 95% confidence interval (CI) 0.70-0.86) than among Swedish pediatric patients (0-17 years) (0.88; 95% CI 0.83-0.92), HR (1.93; 95% CI 1.08-3.46). A similar pattern was seen between adult patients in the two countries: Denmark 10-year EFS 0.85 (95% CI 0.81-0.88), Sweden 0.88 (95% CI 0.84-0.91), adjusted HR 1.51 (95% CI 1.03-2.22)., Conclusion: Adolescents and young adults shared similar clinical presentation suggesting a rationale of harmonized treatment for these groups. Both adult and pediatric protocols provided high OS with no significant difference between the departments. The less frequent use of radiotherapy in Danish pediatric patients corresponded to a lower EFS, but comparable OS in all groups confirmed effective rescue strategies for the relapsing patients.

Background: The overall completeness of the Swedish Cancer Register is high, although underreporting for certain sites must be acknowledged. The aims of the present study were twofold. Firstly to assess the completeness of reporting of pancreatic cancer to the Swedish Cancer Register, and secondly to identify and characterise long-term survivors based on information from two separate population-based register resources., Material and Methods: To assess the completeness of the Cancer Register, pancreatic cancer cases registered in the National Patient Register between 1987 and 1999 were compared to cases reported to the Cancer Register. For estimations of long-term survival, the study population was restricted to 4321 cases identified both in the Cancer Register and the Patient Register with a histopathologically confirmed diagnosis of pancreatic ductal adenocarcinoma. A complete follow-up of survival in this group was performed till December 31, 2004., Results: There was a considerable underreporting of pancreatic cancer to the Cancer Register. During the period under study, a total of 19 745 patients were identified with a diagnosis of pancreatic cancer. Of these, only 73% had been reported to the Cancer Register. The underreporting increased markedly with age at diagnosis and was more pronounced during the second period under study. Only 2.8% of patients with a histopathologically confirmed diagnosis of pancreatic ductal adenocarcinoma survived five years or longer. The likelihood of long-term survival was strongly associated with younger age and surgery. Pancreatic resection was reported in 20.4% of all patients. Median survival among those operated on was 12 months compared to 4.6 months in all patients., Conclusions: Underreporting of pancreatic cancer to the Swedish Cancer Register was pronounced and increased with older age. Less than 3% of patients with a record of pancreatic cancer both in the Cancer Register and the Patient Register survived five years or longer.

Objective: To examine temporal trends in the incidence of hydatidiform mole (HM) in relation to maternal age, the occurrence of choriocarcinoma in women with a history of HM and the extent of underreporting of HM to the Swedish Cancer Register (SCR)., Methods: Women registered with a diagnosis of HM were identified in the Swedish Cancer Register and the Swedish Inpatient Register (IPR). Record linkage to the Medical Birth Register provided information to assess the incidence of HM., Results: We identified 3 844 unique cases of HM in the SCR and in the IPR combined between 1973 and 2004, yielding an incidence of 1.2 per 1 000 deliveries. The incidence of HM increased during the period under study. The highest incidence was observed in women below 20 and above 39 years of age. Of all registered cases of choriocarcinoma, 37% occurred in women with a previous history of HM. The risk of choriocarcinoma following HM was 1.3%, compared to 0.005% in women without a previous molar diagnosis. The records of the Cancer Register included 83.2% of all identified cases of HM., Conclusion: The incidence of HM in Sweden has increased over time, and is characterized by a bimodal pattern with distinctive peaks in the youngest and oldest women of reproductive age. More than one third of all women registered with choriocarcinoma had a previous diagnosis of HM. Despite mandatory reporting, there was evidence of underreporting of HM to the SCR that remained virtually unchanged over calendar time.