Agreement between the Danish Cancer Registry and the Danish Colorectal Cancer Group Database.

Background: The Danish Cancer Registry (DCR) and the Danish Colorectal Cancer Group (DCCG) database are population-based registries collecting information on Danish patients with colorectal cancer (CRC). DCR registers all patients with incident CRC whereas DCCG records patients with first time CRC. The registries use different inclusion criteria. The consequencenses of this are unknown and not previously evaluated. The aim of this study was to examine the agreement between patients registered in DCR and DCCG and to evaluate its influence on estimated survival and mortality.Material and methods: Patients registered in DCR and DCCG with CRC in 2014-2015 were included. Because of different inclusion criteria, DCCG's inclusion criteria were applied to DCR. Descriptive statistics were used for comparisons. One-year relative survival (1-year RS) was calculated, and the Cox proportional hazard model used for calculating 1-year mortality rate ratios (1-year MRR).Results: In 2014-2015, DCR registered 9678 Danish residents with CRC that fulfilled DCCG's inclusion criteria, while DCCG registered 10,312 Danish residents with CRC. Allowing ±180 days between dates of diagnosis, 10,688 patients were registered with CRC in the merger of the two registries. Of these, 86% were included in both registers, 4% only in DCR, and 10% only in DCCG. No difference was found in 1-year RS between patients in DCR 86% (95% CI: 85-87) and DCCG 85% (95% CI: 84-86). However, patients registered in DCCG had a 1-year MRR of 1.09 (95% CI: 1.01-1.17) compared to DCR.Conclusion: An agreement of 86% of patients was found between the two registries. The discrepancy did not influence 1-year RS. DCCG registered more patients than DCR, and 1-year MRR of patients in DCCG was increased compared to patients in DCR. Regular linkage of the registries is recommended to improve data quality of both registries.

Early death in Danish stage I lung cancer patients: a population-based case study.

OBJECTIVE: Clinical stage (c-stage) at diagnosis is the most significant prognostic marker for patients with cancer, where 1- and 5-year survival rates as main landmarks when assessing outcomes. This is a population-based case study of Danish c-stage I lung cancer patients who were considered candidates for curative therapy and then died within 1 year after diagnosis (cases). Cases were identified in the Danish Lung Cancer Register (DLCR), and medical records were used to retrieve treatment details and cause of death (CoD). Our aims were, if possible, to identify and describe clusters of patients, in terms of CoD and treatment modality at risk for an adverse short-term outcome. RESULTS: Patients who died early were more frequently male, older, had squamous-cell histology, were less frequently surgically treated and generally had a higher burden of comorbidity. In terms of CoD, 29% died of lung cancer with distant recurrence (DR) as the most common type of recurrence (55%). Death from co-morbidity occurred for 23%, where the largest proportion (36%) died from another cancer. Nineteen percentage died from treatment complications, with the majority being male (p < .001). The remainder died of unknown or other causes. CONCLUSIONS: Lung cancer with DR remains the most common CoD. Identifying and accordingly treating patients at risk for DR could potentially improve outcomes. Further studies of the predominantly male subgroup of patients who die of treatment complications are needed. Death from co-morbidity especially in patients with another cancer is a significant CoD and when assessing the quality of lung cancer care a competing event.

Assessing the pattern of recurrence in Danish stage I lung cancer patients in relation to the follow-up program: are we failing to identify patients with cerebral recurrence?

BACKGROUND: There is paucity of evidence regarding the optimal follow-up (FU) regimen for lung cancer. Consequently, FU is organized differently across countries. The Danish FU regimen has short FU intervals with a computed tomography (CT) scan of the chest and upper abdomen every three months in the early phase (first 2 years), then every six months in the late phase of FU (3rd, 5th year). Characterizing recurrences missed by the FU program in terms of site, tumor histology, department, and phase of FU, could improve the FU program. MATERIAL AND METHOD: A case-control study of curatively treated stage I lung cancer patients who attended the Danish FU-program and had recurrence identified through the follow-up program (controls, FU group) or outside FU program (cases, symptomatic group). RESULTS: Of 233 included patients with recurrence, the FU group constituted 85% (n = 197). Among the 15% (n = 36) in the symptomatic group, 53% had involvement of the central nervous system compared with 3% in the FU group. The unadjusted odds ratio (OR) for having an isolated brain recurrence (IBR) in the symptomatic group was 52.3 (95%CI: 15.1-181.4) as compared with the FU group. The OR for having a symptomatic recurrence in the early phase of FU was 2.5 (95%CI: 0.7-8.7) compared with the late phase. CONCLUSIONS: The FU program did not identify the majority of patients with IBR. Including cerebral imaging in the FU program may result in an earlier detection of brain metastases. These matters should be studied in a prospective setting.

Marriage and divorce among childhood cancer survivors.

Many childhood cancer survivors have psychosocial late effects. We studied the risks for cohabitation and subsequent separation. Through the Danish Cancer Register, we identified a nationwide, population-based cohort of all 1877 childhood cancer survivors born from 1965 to 1980, and in whom cancer was diagnosed between 1965 and 1996 before they were 20 years of age. A sex-matched and age-matched population-based control cohort was used for comparison (n=45,449). Demographic and socioeconomic data were obtained from national registers and explored by discrete-time Cox regression analyses. Childhood cancer survivors had a reduced rate of cohabitation [rate ratio (RR) 0.78; 95% confidence interval (CI): 0.73-0.83], owing to lower rates among survivors of both noncentral nervous system (CNS) tumors (RR 0.88; 95% CI: 0.83-0.95) and CNS tumors (RR 0.52; 95% CI: 0.45-0.59). Male CNS tumor survivors had a nonsignificantly lower rate (RR 0.47; 95% CI: 0.38-0.58) than females (RR 0.56; 95% CI: 0.47-0.68). The rates of separation were almost identical to those of controls. In conclusion, the rate of cohabitation was lower for all childhood cancer survivors than for the population-based controls, with the most pronounced reduction among survivors of CNS tumors. Mental deficits after cranial irradiation are likely to be the major risk factor.

Improved survival of Danish cancer patients 2007-2009 compared with earlier periods.

INTRODUCTION: For the majority of cancers, improved long-term survival may be accessed from survival during the first year after diagnosis. A steady improvement in survival was seen both before and after the introduction of cancer control plans in 2000 and 2005. On the basis of data from 2007-2009, we studied the trend in 1-year survival after the introduction of the 2005 plan. MATERIAL AND METHODS: All cancers from 1995-2009 were studied in five 3-year cohorts of incident cases which were followed-up for death to the end of 2010. Age-standardised 1-, 3- and 5-year relative survival was calculated and 1-year survival presented for 2004-2006 and 2007-2009 to allow comparison with our previous publication. RESULTS: The improvement over time in overall 1-year age-standardised relative survival was maintained with a three percentage point increase to 72% for men and 75% for women. Exclusion of prostate and breast cancer from calculations lowered relative survival to 65% and 67%, respectively; but improvement was maintained. Cancer sites which previously enjoyed a high survival saw the least or no improvement as was the case for haematological cancers, except for non-Hodgkin lymphoma in men. The differences in survival between men and women are diminishing, especially for cancers of the digestive tract. CONCLUSION: The improvements over time in survival after introduction of the cancer plans were maintained for non-haematological cancers. The fast-track system for diagnosis and treatment introduced gradually by cancer sites until the end of 2008 along with some centralisation of elective surgery may have narrowed the gap in cancer survival between men and women for digestive tract cancers and may also have improved survival for other cancers, e.g. the sex-specific types and kidney and brain cancers. FUNDING: not relevant. TRIAL REGISTRATION: not relevant.

Primary Sjögren's Syndrome: A Retrospective Cohort Study of Burden of Illness in Sweden.

INTRODUCTION: Primary Sjögren's syndrome (pSS) is an autoimmune disease that affects salivary and lachrymal glands and is associated with complex extraglandular manifestations. This study investigates the clinical and economic burden and disease course of pSS in Sweden. METHODS: This retrospective cohort study utilizes data from Swedish national registries and consists of patients at least 18 years of age diagnosed in secondary care with pSS, and matched members of the Swedish general population. Healthcare resource utilization (HRU) and costs were compared. The clinical burden of pSS during follow-up was explored via year-on-year prevalence of and time-to-first extraglandular manifestation. Employment status and retirement rates were used to investigate the impact of pSS on productivity. RESULTS: A total of 8884 patients with pSS and 88,233 general population comparators were included. Patients with pSS had significantly higher rates of HRU and higher healthcare costs than matched comparators, including twice as many outpatient visits. Costs were highest in year 1 post index before reducing in years 2 and 3 and stabilizing thereafter. Almost two-thirds of patients received their index diagnosis during an outpatient visit, and < 30% of diagnoses were from rheumatology departments. Overall, 41% of patients experienced a healthcare encounter that included a relevant extraglandular manifestation code during follow-up. Patients with pSS had significantly higher odds of early retirement than the general population at 5 years post index. CONCLUSIONS: Patients with pSS experience a high clinical and economic disease burden in Sweden.

Primary Sjögren's syndrome (pSS) is an autoimmune disease that typically affects the secretory glands that produce tears, saliva, and other secretions. Patients can experience debilitating fatigue and can also develop conditions in other parts of the body, commonly including arthritis and Raynaud's phenomenon. This study investigated the burden and disease course of pSS in Sweden. Swedish national registry data were used to match adult patients diagnosed with pSS, with members of the Swedish general population. The use of healthcare resources and their associated costs were compared. The clinical burden of pSS during patient follow-up was explored via year-on-year occurrence and cumulative incidence of extraglandular symptoms. Employment and retirement rates were used to investigate the effect of pSS on patient productivity. A total of 8884 patients with pSS and 88,233 members of the general population were included in the study. Patients with pSS had higher use of healthcare resources and higher associated costs than members of the general population, including twice as many outpatient visits. Costs were highest in the first year after diagnosis, reducing and stabilizing over the following 7 years. Overall, 41% of patients had a healthcare encounter that included a relevant extraglandular symptom code during follow-up. Almost two-thirds of patients were diagnosed during an outpatient visit, and < 30% of diagnoses were from rheumatology departments. Patients with pSS were at a greater risk of early retirement than the general population at 5 years post-diagnosis. These results indicate that patients with pSS experience a high disease burden in Sweden.

Agreement between the Danish Cancer Registry and the Danish Lung Cancer Registry.

INTRODUCTION: The Danish Cancer Registry (DCR) and the Danish Lung Cancer Registry (DLCR) are nation-wide registries recording Danish patients with lung cancer (LC). The aim of this study was to assess data agreement and possible consequences hereof on estimation of survival between patients in the two registries. METHODS: Descriptive statistics were used for comparison of registered patients in 2013-2014 in the DCR and the DLCR. Furthermore, the one-year relative survival (1y-RS) and Cox proportional mortality hazard rates (MRR) were calculated. RESULTS: In 2013-2014, a total of 9,111 Danish residents were identified with LC in the DCR and 9,316 were found in the DLCR. Merging the two registries showed an agreement of 87%, whereas 6% were included only in the DCR and 8% only in the DLCR. Including patients only registered in one registry, but who seemed to meet the inclusion criteria of both registries, would increase the agreement to 95%. No differences were seen for 1y-RS. However, MRR for patients in the DLCR was significantly lower than for patients in the DCR: 0.94 (95% confidence interval: 0.91-0.98). CONCLUSIONS: Surprisingly, the DCR registered fewer patients in 2013-2014 than the DLCR, even though they employ the same primary data source. The agreement between the DCR and the DLCR was 87%; this may be increased to 95% if patients who seemed to meet the inclusion criteria of the other register were also included. The discrepancies found were mainly due to different definitions of dates of diagnosis, registrations probably missed by the algorithms and possible registration errors. Discrepancies resulted in a significant difference in MRR, but not in 1y-RS. FUNDING: none. TRIAL REGISTRATION: not relevant.

Inhaled corticosteroids and the risk of type 2 diabetes among Swedish COPD patients.

This study reports the association of ICS use and the risk of type 2 diabetes mellitus (T2DM) in Swedish patients with COPD using data from real-world, primary care settings. A total of 7078 patients with COPD were included in this analysis and the 5-year cumulative incidence rate per 100,000 person years was 1506.9. The yearly incidence rate per 100,000 person years ranged from 850 to 1919. Use of ICS especially at a high dose in patients with COPD was related to an increased risk of T2DM.

Risk factors for patient-reported errors during cancer follow-up: Results from a national survey in Denmark.

Due to an increased cancer survival, more cancer patients are referred to follow-up after primary treatment. Knowledge of patient safety during follow-up is sparse. OBJECTIVE: To examine patient-reported errors during cancer follow-up and identify factors associated with errors. DESIGN: A national survey on cancer patients' experiences of treatment and aftercare was conducted in 2012, about two years following cancer diagnosis (N=6914). Associations between patient-reported errors during follow-up and covariates were examined using multiple logistic regression. Qualitative responses were analysed using text analysis. RESULTS: This study included 3731 patients, representing a response rate of 64%. Overall, 27.6% of patients reported at least one error during cancer follow-up. 11.7% reported that important information was missing at follow-up consultations; 9.8% were not called in for a follow-up as expected; 16.7% reported that the doctor/nurse handling the follow-up consultation were ill-prepared on their course of disease. Other errors were reported by 4.7%. Patients who reported errors in follow-up were more likely to report an error or complication during primary cancer treatment, not having one health professional with oversight and responsibility for their overall follow-up pathway, be younger, have a diagnosis of rare cancer, poorer self-rated health and high usage of healthcare services. CONCLUSION: Workflows related to handling of test results, referrals, bookings and medical records have to be improved. Introduction of one particular healthcare professional responsible for the patients' follow-up may result in fewer patient-reported errors however interventions are needed to examine this. Patients prone to errors should be subject to particular attention.

Incidence and survival in patients with cutaneous melanoma by morphology, anatomical site and TNM stage: a Danish Population-based Register Study 1989-2011.

INTRODUCTION: The incidence of melanoma of the skin has risen in Denmark in recent decades, the increase being steeper from 2004. It is unclear whether this represents a true rise in incidence or whether it is caused by an increased awareness of the condition. METHODS: To assess whether the increase was characterised by early-stage melanomas and a higher proportion of melanomas with superficial spreading morphology, we studied all skin melanoma patients registered in the Danish Cancer Register 1989-2011 (n=27,010) and followed up for death through 2013. Trends in age-standardised incidence by sex, subsite and morphology, relative survival, TNM stage distribution and stage-specific relative survival from 2004 were analysed. RESULTS: The incidence of melanoma more than doubled over 23 years. A steeper increase from 2004 was driven mainly by superficial spreading tumours, but the proportion of nodular melanomas in patients 50 years of age and over also increased significantly. The largest increase occurred for stage I tumours and for tumours on the trunk. From 1989-1993 to 2009-2011 the 5-year relative survival increased at 12% and 6% points for male and female patients, respectively. INTERPRETATION: Greater awareness, and thus lower stage at diagnosis (mediated by a large skin cancer prevention campaign from 2007), might explain part of the increase, but the increase in nodular melanoma also points to a genuine increase in the risk of melanoma.

Leaving home after cancer in childhood: a measure of social independence in early adulthood.

BACKGROUND: Previous studies on psychosocial outcomes for childhood and adolescent cancer survivors have found diverse results concerning social independence. As a measure of social independence, we investigated whether cancer survivors displayed the same patterns of leaving home as population-based control group. PROCEDURE: We identified 1,597 patients in the Danish Cancer Register, born in 1965-1980, in whom a primary cancer was diagnosed before they reached the age of 20 in the period 1965-1995. The patients were compared with a random sample of the general population (n = 43,905) frequency matched on sex and date of birth. By linking the two cohorts to registers in Statistics Denmark, we obtained socioeconomic data for the period 1980-1997. The relative risk for leaving home was estimated with discrete-time Cox regression models. RESULTS: The risk for leaving home of survivors of hematological malignancies and solid tumors did not differ significantly from that of the control cohort. Adjustments for possible socioeconomic confounders did not change this pattern. In contrast, survivors of central nervous system (CNS) tumors had a significantly reduced risk for leaving home, which was most pronounced for men (relative risk, men: 0.66; 95% confidence interval, 0.55-0.80; women: 0.88, 95% confidence interval, 0.80-0.97). CONCLUSION: Overall, the psychosocial effects of cancer in childhood or adolescence and its treatment on the survivor and family did not appear to impede social independence in early adulthood, except for survivors of CNS tumors.