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INTRODUCTION: The National Swedish Kidney Cancer Register (NSKCR) was launched in 2005. It is used for health care quality improvement and research. The aim of this study was to validate the register's data quality by assessing the timeliness, completeness, comparability and validity of the register. MATERIAL AND METHODS: To assess timeliness we evaluated the number of days between date of diagnosis and date of reporting the patient to the NSKCR. For completeness, we used data on number of cancer cases reported to the NSKCR compared to cases reported to the Swedish Cancer Register. Comparability was evaluated by reviewing coding routines and comparing data collected in the NSKCR to national and international guidelines. Validity was assessed by reabstraction of data from medical charts from 431 randomly selected patients diagnosed in 2007, 2010, 2013 and 2016. RESULTS: Timeliness has improved since the register started. In 2016, 76.9% and 96.5% of the patients were reported within 6 and 12 months respectively. Completeness was high, with a 99.5% coverage between 2008 and 2017. Registration forms and manuals were updated according to national and European guidelines. Improvements have been made continuously to decrease the risk of reporting mistakes and misunderstandings. Validity was high where a majority of the variables demonstrated an exact agreement >90% and few missing values. CONCLUSION: Overall, the data quality of the NSKCR is high. Completeness, comparability and validity is high. Timeliness can be further improved, which will make it easier to follow changes and improve the care and research of RCC patients., Funding Agencies:Swedish government cCunty councils (ALF-agreement)

Purpose: End-stage renal disease (ESRD) is a known risk factor for the development of renal cell carcinoma (RCC). This case-control study was performed to assess the risk in a nationwide cohort and evaluate tumor characteristics and survival in the ESRD-RCC population. Methods: In this study, 9,299 patients with RCC identified in the National Swedish Kidney Cancer Register from 2005 until 2014 and 93,895 matched controls were linked to the Swedish Renal Registry and the National Patient Register. ESRD was defined as chronic kidney disease stage 5, kidney transplantation or kidney dialysis 0–40 years before the diagnosis of RCC. Results: A total of 117 patients with ESRD and subsequent RCC were identified and compared with 9,087 patients with RCC. There was a 4.5-times increased risk for RCC among ESRD patients (95% CI = 3.6–5.6; p < 0.001) compared to matched controls. Longer time with ESRD increased the risk of RCC (ESRD > 9 years, OR = 10.2, 95% CI = 7.0–14.8). The ESRD-RCC patients were younger (p = 0.002), had smaller tumors (p < 0.001) and had lower tumor stage (p = 0.045). The incidence of papillary and chromophobe RCC was higher and clear cell RCC lower among the ESRD patients (p < 0.001). The 5-year overall survival was 50% in ESRD-RCC patients and 63% in RCC-only patients (p < 0.05). Conclusion: More than 9 years with ESRD increased the risk of developing RCC 10-times compared to individuals without ESRD and the tumors showed a different histopathological pattern. Despite a less advanced tumor stage at diagnosis, the overall survival in ESRD-RCC patients was lower compared to patients with RCC-only.

Background: Recently, the CARMENA and SURTIME studies, suggested that upfront cytoreductive nephrectomy (CN) should be abandoned for patients with intermediate and high-risk metastatic renal cell carcinoma (mRCC). However, CN remains an indication in low-risk and when immediate systemic treatment is not required. The aim was to evaluate the long-term overall survival (OS) in patients with primary mRCC, based on the first line treatment. Methods: There were 1483 patients with primary mRCC in the National Kidney Cancer Registry from 2005 to 2013. Data on primary treatment, TNM stage, RCC type, tumor size, patient age and sex were extracted. Survival time was calculated from time of diagnosis to time of death or until July 2019. Mann-Whitney U and Chi-square tests, the Kaplan-Meyer method and Cox regression analyses were used. Results: Patients primary treated with CN had a significantly longer OS (p < .001) than patients primary treated with systemic therapy or palliation. In a Cox regression multivariate analysis, the hazard ratio for CN compared with no CN was 1.600, 95%Ci (1.492 − 1.691), p < .001. Also occurrence of lymph node metastases, T-stage, patients age and year of diagnosis, remained as independent predictors of OS. Conclusion: Patients primary treated with CN survived significantly longer than patients primary treated with systemic therapy or palliation, in all age groups. CN was an important first-line treatment option in mRCC patients.

Introduction: In 2005, the National Swedish Kidney Cancer Register (NSKCR) was set up to collect data on newly diagnosed patients with renal cell carcinoma (RCC). In 2015, the NSKCR was linked to a number of national healthcare and demographic registers to construct the Renal Cell Cancer Database Sweden (RCCBaSe). The aim was to facilitate research on trends in incidence, effects of treatment and survival, with detailed data on tumour characteristics, treatment, pharmaceutical prescriptions, socioeconomic factors and comorbidity. Material and methods: All patients registered in the NSKCR between 2005 and 2014 were included. For each case, ten controls and first-degree relatives for cases and controls were identified. The RCCBaSe was created linking all cases, controls and first-degree relatives to a number of national registers with information on co-morbidity, socioeconomic factors and pharmaceutical prescriptions. Results: Between 2005 and 2014, a total of 9,416 patients with RCC were reported to the NSKCR. 94,159 controls and a total cohort of 575,007 individuals including cases, controls and first-degree relatives were identified. Linkage to the Swedish cancer register resulted in 106,772 matches. When linked to the National patient register, 432,677 out-patient and 471,359 in-patient matches were generated. When linked to the Swedish renal registry 1,778 matches were generated. Linkage to the Prescribed drug register resulted in 448,084 matches and linkage to the The Longitudinal integration database for health insurance and labour market studies database resulted in 450,017 matches. Conclusion: By linking the NSKCR to several Swedish national databases, a unique database for RCC research has been created.

Objective: The aim of this investigation was to study differences between male and female patients with stage T1 urinary bladder cancer (UBC) regarding intravesical instillation therapy, second resection and survival. Materials and methods: This study included all patients with non-metastatic primary T1 UBC reported to the Swedish National Register of Urinary Bladder Cancer (SNRUBC) from 1997 to 2014, excluding those treated with primary cystectomy. Differences between groups were evaluated using chi-squared tests and logistic regression, and survival was investigated using Kaplan-Meier and log-rank tests and Cox proportional hazards analysis. Results: In all, 7681 patients with T1 UBC (77% male, 23% female) were included. Females were older than males at the time of diagnosis (median age at presentation 76 and 74 years, respectively; p < .001). A larger proportion of males than females underwent intravesical instillation therapy (39% vs 33%, p<.001). Relative survival was lower in women aged >= 75 years and women with G3 tumours compared to men. However, women aged >= 75 years who had T1G3 tumours and underwent second resection followed by intravesical instillation therapy showed a relative survival equal to that observed in men. Conclusions: This population-based study demonstrates that women of all ages with T1 UBC undergo intravesical instillation therapy less frequently than men, and that relative survival is poorer in women aged >= 75 years than in men of the same age when intravesical instillation therapy and second resection are not used. However, these disparities may disappear with treatment according to guidelines.

To present the occurrence of metastases and local recurrences in primary non-metastatic patients with renal cell carcinoma (RCC) in a contemporary Swedish population-based cohort. Between 2005 and 2009, a total of 4527 patients were included in the prospective National Swedish Kidney Cancer Register accounting for nearly all RCC patients in Sweden. Among M0 patients, 472 (13 %) had no follow-up data registered within 5-year follow-up time and were excluded from the analysis. In total, 939 (21 %) had distant metastases at presentation with a decrease from 23 to 18 % during the inclusion period. Of 3107 patients with follow-up data and with M0 disease, 623 (20 %) were diagnosed with a tumor recurrence during 5-year follow-up. Mean time to recurrence was 24 months (SD +/- A 20 months). Among these, 570 patients (92 %) were at primary diagnosis treated with radical nephrectomy, 23 patients (3.7 %) with partial nephrectomy and 12 patients (1.9 %) with minimally invasive treatments. The most frequent sites of metastases were lung (54 %), lymph nodes (22 %) and bone (20 %). The treatment of recurrence was in 50 % systemic treatments, while metastasectomy was performed in 17 % of the patients, out of which 68 % were with a curative intention. In this population-based study, 21 % of the patients had metastatic disease at presentation, with a decreasing trend over the study period. During 5-year follow-up, 20 % of the primary non-metastatic patients had recurrent disease. Of the patients with recurrence, half were given systemic oncological treatment and 17 % underwent metastasectomy.

Objective: The aim of this investigation was to describe tumour characteristics, treatments and survival in patients with urinary bladder cancer (UBC) in a national population-based cohort, with special reference to gender-related differences. Material and methods: All primary UBC patients with urothelial pathology reported to the Swedish National Registry of Urinary Bladder Cancer (SNRUBC) from 1997 to 2011 were included in the study. Groups were compared regarding tumour, node, metastasis classification, primary treatment and survival. Results: In total, 30,310 patients (74.9% male, 25.1% female) with UBC were analysed. A larger proportion of women than men had stage T2-T4 (p<0.001), and women also had more G1 tumours (p<0.001). However, compared to women, a larger proportion of men with carcinoma in situ or T1G3 received intravesical treatment with bacillus Calmette-Guerin or intravesical chemotherapy, and a larger proportion of men with stage T2-T4 underwent radical cystectomy (38% men vs 33% women, p<0.0001). The cancer-specific survival at 5 years was 77% for men and 72% for women (p<0.001), and the relative survival at 5 years was 72% for men and 69% for women (p<0.001). Conclusions: In this population-based cohort comprising virtually all patients diagnosed with UBC in Sweden between 1997 and 2011, female gender was associated with inferior cancer-specific and relative survival. Although women had a higher rate of aggressive tumours, a smaller proportion of women than men received optimal treatment.

Objective: The aim of this population-based study was to evaluate the impact of quality indicators on the adherence to guidelines for renal cell carcinoma (RCC). Material and methods: Since 2005, virtually all patients with newly diagnosed RCC in Sweden have been registered in the National Swedish Kidney Cancer Register (NSKCR). The register contains information on histopathology, nuclear grade, clinical stage, preoperative work-up, treatment, recurrence and survival. In addition, a number of quality indicators have been measured in the register aiming to increase the quality of care. The quality indicators are: the coverage of the register, histology reports, preoperative chest computed tomography (CT), partial nephrectomy, laparoscopic surgery, centralization to high-volume hospitals and waiting times. Results: A total of 8556 patients with diagnosed RCC were registered from 2005 to 2013 (99% coverage). In 2013, 99% of the histopathology reports were standardized. The number of patients with preoperatively chest CT increased from 59% in 2005 to 89% in 2013. The proportion of patients with RCC T1aN0M0 who underwent partial nephrectomy increased from 22% in 2005 to 56% in 2013. Similarly, laparoscopic radical nephrectomies increased from 6% in 2005 to 24% in 2013. The median tumour size at detection decreased from 60 mm in 2005 to 55 mm in 2013. The proportion of patients who were incidentally detected increased from 43% in 2005 to 55% in 2013. Conclusions: The data show an improved adherence to the guidelines for RCC as measured by quality indicators and a steady process of earlier detection of patients with RCC.

Methodology: Since the start in 2005 virtually all patients with newly diagnosed renal cell carcinoma (RCC) in Sweden are reported to the National Swedish Kidney Cancer Register (NSKCR). The register contains information on histopathology, nuclear grade, clinical stage, preoperative work-up, treatment, recurrence, and survival. Results: A total of 8556 patients with newly diagnosed RCC were registered in the NSKCR from 2005 to 2013 resulting in a coverage of 99% as compared to the Swedish Cancer Registry. The mean tumor size at detection decreased from 70 mm in 2005 to 64 mm in 2010. The proportion of patients who were incidentally detected increased. The proportion of patients with tumor stage T1a who underwent partial nephrectomy increased from 22% in 2005 to 56% in 2012. Similarly, the proportion of laparoscopically performed radical nephrectomies increased from 6% in 2005 to 17% in 2010. During the five years of follow-up 20% of the patients had a recurrence. Conclusion: Over the last decade there has been a trend of earlier detection and less advanced tumors at detection in patients with RCC. An increasing proportion of the patients undergo laparoscopic and nephron-sparing procedures.

Objective. Tumour characteristics, preoperative work-up and surgical treatment in patients diagnosed with renal cell carcinoma (RCC) between 2005 and 2010, and changes over time were studied in a national population-based cohort. Material and methods. The National Swedish Kidney Cancer Register (NSKCR) contains information on histopathology, Fuhrman grade and clinical stage at presentation, and on the preoperative work-up and surgical treatment of patients with RCC. Between 2005 and 2010, 5553 RCC patients were registered in the NSKCR, 99% of those registered in the National Cancer Registry. Results. During the study period the mean tumour size decreased from 70 to 64 mm (p = 0.024) and the frequency of metastatic RCC decreased from 22% to 15% (p < 0.001). The use of preoperative chest computed tomography increased from 59% to 84%. In total, 4229 (76%) patients were treated with curative intent, 3453 (82%) underwent radical nephrectomy, 606 (14%) partial nephrectomy (PN) and 170 (4%) cryotherapy or radiofrequency ablation. In tumours up to 4 cm, PN was performed in 33% of the surgically treated patients. PN irrespective of size increased from 8% to 20% and laparoscopic nephrectomy increased from 6% to 17% during the period. In patients with metastatic RCC, 55% underwent cytoreductive nephrectomy. Conclusions. The NSKCR explores population-based data on the clinical handling of patients with RCC. This study, between 2005 and 2010, shows significant decrease in tumour size and metastatic RCC at presentation, a more complete preoperative work-up, and significantly increased use of PN and laparoscopic nephrectomy in Sweden.

BACKGROUND: Hip fractures are associated with increased mortality and are a known adverse effect of androgen deprivation therapy (ADT) for prostate cancer (PCa). It was our aim to evaluate how mortality after hip fracture is modified by PCa and ADT. METHODS: PCa dataBase Sweden (PCBaSe 2.0) is based on the National PCa Register and also contains age and county-matched PCa-free men. We selected all men (n = 14,205) who had been hospitalized with a hip fracture between 2006 and 2010; 2,300 men had a prior PCa diagnosis of whom 1,518 (66%) were on ADT prior to date of fracture. Risk of death was estimated with cumulative incidence and standardized mortality ratios (SMRs) to make comparisons with the entire PCa population and the general population. RESULTS: Cumulative incidences indicated that there was a higher risk of death following a hip fracture for PCa men on ADT than for PCa men not on ADT or PCa-free men, particularly in the first year. The SMRs showed that PCa men on ADT with a hip fracture were 2.44 times more likely to die than the comparison cohort of all PCa men (95%CI: 2.29-2.60). This risk was especially increased during the first month (5.64 (95%CI: 4.16-7.48)). In absolute terms, hip fractures were associated with 20 additional deaths per 1,000 person-years in PCa men not on ADT, but 30 additional deaths per 1,000 person-years for PCa men on ADT, compared to all PCa men. CONCLUSION: Hip fractures are associated with higher all-cause mortality in PCa men on ADT than in PCa men not on ADT or PCa-free men, especially within the first three months.

Background: Prostate cancer patients have an increased risk of fractures as a consequence of skeletal metastases and osteoporosis induced by endocrine treatment. Data on incidence of fractures and risks in subgroups of men with prostate cancer are sparse. Our aim with this study is to report the risk of fractures among men with prostate cancer in a nationwide population-based study. Patients and methods: We identified 76,600 Swedish men diagnosed with prostate cancer 1997-2006 in the Prostate Cancer Data Base (PCBaSe) Sweden and compared the occurrence of fractures requiring hospitalisation with the Swedish male population. Results: Only men treated with gonadotropin releasing-hormone (GnRH) agonists or orchiectomy had increased incidence and increased relative risk of fractures requiring hospitalisation. Men treated with GnRH agonists had 9.8 and 6.3/1000 person-years higher incidence of any fracture and hip fracture requiring hospitalisation than the general population. The corresponding increases in incidence for men treated with orchiectomy were 16 and 12/1000 person-years, respectively. Men treated with orchiectomy, GnRH agonists, and antiandrogen monotherapy, had SIR for hip fracture of 2.0 (95% Confidence Interval 1.8-2.2), 1.6 (95% CI 1.5-1.8) and 0.9 (95% CI 0.7-1.1), respectively. Men treated with a curative intent (radical prostatectomy or radiotherapy) or managed with surveillance had no increased risk of fractures. Older men had the highest incidence of fractures while younger men had the highest relative risk. Conclusion: Prostate cancer patients treated with GnRH agonists or orchiectomy have significantly increased risk of fractures requiring hospitalisation while patients treated with antiandrogen monotherapy had no increase in such fractures. In absolute terms the excess risk in men treated with GnRH agonists corresponded to almost 10 extra fractures leading to hospitalisation per 1000 patient-years. Effects on bone density should be considered for

Aims: To describe the diagnosis and clinical course of an unselected population-based cohort of patients with newly diagnosed transitional cell carcinoma of the urinary bladder. To assess if random bladder biopsies and the detection of concomitant carcinoma in situ have an impact on management and clinical outcome in bladder cancer patients. To study the functional outcome after cystectomy performed with a prostatic capsule and seminal sparing approach. To investigate possible effects on gastrointestinal functions caused by the intestinal reconstruction in patients with orthotopic ileal neobladder. Patients and methods: This study prospectively included 78% (538 patients) of all newly detected bladder cancer patients in the Stockholm region 1995-1996. The patients were followed for at least five years. Choice of treatment, recurrence, progression and survival were studied. The same cohort was then analyzed in order to determine possible impact of random bladder biopsies on choice of treatment and cancer-specific survival. Twenty five male bladder cancer patients who underwent prostatic capsule and seminal sparing cystectomy were evaluated by a questionnaire concerning urinary-, bowel- and sexually related symptoms. Twenty eight patients who underwent radical cystectomy and orthotopic neobladder were compared with ten patients who underwent TURBT concerning possible effects on gastrointestinal functions, such as enterohepatic circulation of bile salt, gastric emptying and gastrointestinal hormone levels. Results and conclusions: In this study none of the patients with PUNLMP (WHO 1999) progressed or died, confirming the low malignant potential. In the group of patients with TaG1-G2, only 2/187 patients (1%) died of bladder cancer. In contrast, patients with TaG3 or T1G2-G3, after five years of follow-up, had a cancer-specific death rate of 30%. Patients with TaG3 or T1G2-G3 in whom random bladder biopsies were performed were more likely to be treated with intravesica

Udgivelsesdato: 2007-null, OBJECTIVE: To investigate the effects of ileum resection in orthotopic neobladder construction on gastrointestinal function and metabolic control. MATERIAL AND METHODS: We included 28 patients who underwent radical cystectomy and construction of an orthotopic neobladder or continent ileal reservoir for bladder cancer. As controls, 10 patients endoscopically treated for non-invasive bladder cancer (TaG2) were enrolled. Gastrointestinal symptoms, enterohepatic bile salt circulation, gastric emptying and gastrointestinal hormones involved in metabolic control were monitored. RESULTS: Of the cystectomy patients, 25% experienced daily diarrhoea and faecal urgency due to bile acid malabsorption, compared to 0% of the controls (p = 0.013). The cystectomy patients experienced faster gastric emptying and had higher levels of peptide YY. Plasma concentrations of insulin, glucagon-like peptide-1 and glucose were unchanged. CONCLUSIONS: Using the distal ileum for orthotopic neobladder construction causes bowel disorders in a quarter of cystectomy patients. Diarrhoea and faecal urgency are probably caused by decreased reabsorption of bile and are not due to changes in gastrointestinal hormones. A sizeable proportion of patients develop bile salt-induced diarrhoea, which can be relieved by treatment with cholestyramine.