netherlands cancer registry
Recently Published Documents


TOTAL DOCUMENTS

88
(FIVE YEARS 64)

H-INDEX

10
(FIVE YEARS 4)

PLoS ONE ◽  
2022 ◽  
Vol 17 (1) ◽  
pp. e0261729
Author(s):  
Prakriti Roy ◽  
Sophie E. van Peer ◽  
Martin M. de Witte ◽  
Godelieve A. M. Tytgat ◽  
Henrike E. Karim-Kos ◽  
...  

Around 6% of all childhood malignancies represent renal tumors, of which a majority includes Wilms tumor (WT). Although survival rates have improved over the last decades, specific patients are still at risk for adverse outcome. In the Netherlands, since 2015, pediatric oncology care for renal tumors has been centralized in the Princess Máxima Center for Pediatric Oncology. Here, we describe experiences of the first 5 years of centralized care and explore whether this influences the epidemiological landscape by comparing data with the Netherlands Cancer Registry (NCR). We identified all patients <19 years with a renal mass diagnosed between 01-01-2015 and 31-12-2019 in the Princess Máxima Center. Epidemiology, characteristics and management were analyzed. We identified 164 patients (including 1 patient who refused consent for registration), in our center with a suspicion of a renal tumor. The remaining 163 cases included WT (n = 118)/cystic partially differentiated nephroblastoma (n = 2)/nephrogenic rests only (n = 6) and non-WT (n = 37). In this period, the NCR included 138 children, 1 17-year-old patient was not referred to the Princess Máxima Center. Central radiology review (before starting treatment) was performed in 121/163 patients, and central pathology review in 148/152 patients that underwent surgery. Treatment stratification, according to SIOP/EpSSG protocols was pursued based on multidisciplinary consensus. Preoperative chemotherapy was administered in 133 patients, whereas 19 patients underwent upfront surgery. Surgery was performed in 152 patients, and from 133 biomaterial was stored. Centralization of care for children with renal tumors led to referral of all but 1 new renal tumor cases in the Netherlands, and leads to referral of very rare subtypes not registered in the NCR, that benefit from high quality diagnostics and multidisciplinary decision making. National centralization of care led to enhanced development of molecular diagnostics and other innovation-based treatments for the future.


Author(s):  
Raoull Hoogendijk ◽  
Jasper van der Lugt ◽  
Dannis van Vuurden ◽  
Leontien Kremer ◽  
Pieter Wesseling ◽  
...  

Abstract Introduction Survival of children with central nervous system (CNS) tumors varies largely between countries. For the Netherlands, detailed population-based estimation of incidence, survival and mortality of pediatric CNS tumors are lacking but are needed to evaluate progress. Methods All CNS tumors diagnosed in patients &lt;18 years during 1990-2017 were selected from the Netherlands Cancer Registry. Other than pilocytic astrocytomas, non-malignant tumors were included since 2000. Incidence and mortality trends were evaluated by Average Annual Percentage Change (AAPC). Changes over time in Five-year Observed Survival (5-year OS) were evaluated by Poisson regression models adjusted for follow-up time. Results Between 1990 and 2017, 2057 children were diagnosed with a malignant CNS tumor and 885 with a pilocytic astrocytoma. During 2000-17, 695 children were diagnosed with other non-malignant CNS tumors. Incidence rates of malignant tumors remained stable, while pilocytic astrocytomas and other non-malignant tumors increased by 2.0% and 2.4% per year, respectively. 5-year OS rates improved for all groups; however, improvement for malignant tumors was not constant over time. The contribution of malignant tumors located at the optic nerve tumors was 1% in 2000-09. However, shifting from pilocytic astrocytomas, increased to 6% in 2010-17, impacting survival outcomes for malignant tumors. Conclusion Survival rates of CNS tumors improved over time, but was not accompanied by a decreasing mortality rate. The observed temporary survival deterioration for malignant tumors appears to be related to changes in diagnostics and registration practices. Whether differences in treatment regimens contribute to this temporary decline in survival needs to be verified.


2021 ◽  
Vol 28 (6) ◽  
pp. 4998-5008
Author(s):  
Madelon M. Voets ◽  
Catharina G. M. Groothuis-Oudshoorn ◽  
Liset H. J. Veneklaas ◽  
Srirang Manohar ◽  
Mariël Brinkhuis ◽  
...  

The goal of this study was to describe the variation in hospital-based diagnostic care activities for patients with symptomatology suspect for breast cancer in The Netherlands. Two cohorts were included: the ‘benign’ cohort (30,334 women suspected of, but without breast cancer) and the ‘malignant’ cohort (2236 breast cancer patients). Hospital-based financial data was combined with tumor data (malignant cohort) from The Netherlands Cancer Registry. Patterns within diagnostic pathways were analyzed. Factors influencing the number of visits and number of diagnostic care activities until diagnosis were identified in the malignant cohort with multivariable Cox and Poisson regression models. Compared to patients with benign diagnosis, patients with malignant disease received their diagnosis less frequently in one day, after an equal average number of hospital visits and higher average number of diagnostic activities. Factors increasing the number of diagnostic care activities were the following: lower age and higher cM-and cN-stages. Factors increasing the number of days until (malignant) diagnosis were as follows: higher BIRADS-score, screen-detected and higher cN-and cT-stages. Hospital of diagnosis influenced both number of activities and days to diagnosis. The diagnostic care pathway of patients with malignant disease required more time and diagnostic activities than benign disease and depends on hospital, tumor and patient characteristics.


2021 ◽  
Vol 11 ◽  
Author(s):  
Marie-Christina Jahreiß ◽  
Wilma D. Heemsbergen ◽  
Bo van Santvoort ◽  
Mischa Hoogeman ◽  
Maarten Dirkx ◽  
...  

PurposeExternal Beam Radiotherapy (EBRT) techniques dramatically changed over the years. This may have affected the risk of radiation-induced second primary cancers (SPC), due to increased irradiated low dose volumes and scatter radiation. We investigated whether patterns of SPC after EBRT have changed over the years in prostate cancer (PCa) survivors.Materials and MethodsPCa survivors diagnosed between 1990-2014 were selected from the Netherlands Cancer Registry. Patients treated with EBRT were divided in three time periods, representing 2-dimensional Radiotherapy (RT), 3-dimensional conformal RT (3D-CRT), and the advanced RT (AdvRT) era. Standardized incidence ratios (SIR) and absolute excess risks (AER) were calculated to estimate relative and excess absolute SPC risks. Sub-hazard ratios (sHRs) were calculated to compare SPC rates between the EBRT and prostatectomy cohort. SPCs were categorized by subsite and anatomic region.ResultsPCa survivors who received EBRT had an increased risk of developing a solid SPC (SIR=1.08; 1.05-1.11), especially in patients aged &lt;70 years (SIR=1.13; 1.09-1.16). Pelvic SPC risks were increased (SIR=1.28; 1.23-1.34), with no obvious differences between the three EBRT eras. Non-pelvic SPC were only significantly increased in the AdvRT era (SIR=1.08; 1.02-1.14), in particular for the 1-5 year follow-up period. Comparing the EBRT cohort to the prostatectomy cohort, again an increased pelvic SPC risk was found for all EBRT periods (sHRs= 1.61, 1.47-1.76). Increased non-pelvic SPC risks were present for all RT eras and highest for the AdvRT period (sHRs=1.17, 1.06-1.29).ConclusionSPC risk in patients with EBRT is increased and remained throughout the different EBRT eras. The risk of developing a SPC outside the pelvic area changed unfavorably in the AdvRT era. Prolonged follow-up is needed to confirm this observation. Whether this is associated with increased irradiated low-dose volumes and scatter, or other changes in clinical EBRT practice, is the subject of further research.


2021 ◽  
pp. jclinpath-2021-207865
Author(s):  
Elisabeth M P Steeghs ◽  
Geraldine R Vink ◽  
Marloes A G Elferink ◽  
Quirinus J M Voorham ◽  
Hans Gelderblom ◽  
...  

For a nationwide real-word data study on the application of predictive mutation testing of patients with colorectal cancer (CRC) for anti-epidermal growth factor receptor (EGFR) therapy stratification, pathology data were collected from the Dutch Pathology Registry from October 2017 until June 2019 (N=4060) and linked with the Netherlands Cancer Registry. Mutation testing rates increased from 24% at diagnosis of stage IV disease to 60% after 20–23 months of follow-up (p<0.001). Application of anti-EGFR therapy in KRAS/NRAS wild-type patients was mainly observed from the third treatment line onwards (65% vs 17% in first/second treatment line (p<0.001)). The national average KRAS/NRAS/BRAF mutation rate was 63.9%, being similar for next-generation sequencing (NGS)-based approaches and single gene tests (64.4% vs 61.2%, p=ns). NGS-based approaches detected more additional potential biomarkers, for example, ERBB2 amplifications (p<0.05). Therefore, single gene tests are suitable to stratify patients with mCRC for anti-EGFR therapy, but NGS is superior enabling upfront identification of therapy resistance or facilitate enrolment into clinical trials.


Cancers ◽  
2021 ◽  
Vol 13 (20) ◽  
pp. 5104
Author(s):  
Chantal A. Lebbink ◽  
Medard F. M. van den Broek ◽  
Annemiek B. G. Kwast ◽  
Joep P. M. Derikx ◽  
Miranda P. Dierselhuis ◽  
...  

Thyroid cancer is the most common endocrine malignancy in children. A rising incidence has been reported worldwide. Possible explanations include the increased use of enhanced imaging (leading to incidentalomas) and an increased prevalence of risk factors. We aimed to evaluate the incidence and survival trends of thyroid cancer in Dutch children, adolescents, and young adults (0–24 years) between 1990 and 2019. The age-standardized incidence rates of differentiated thyroid cancer (DTC, including papillary and follicular thyroid cancer (PTC and FTC, respectively)) and medullary thyroid cancer (MTC), the average annual percentage changes (AAPC) in incidence rates, and 10-year overall survival (OS) were calculated based on data obtained from the nationwide cancer registry (Netherlands Cancer Registry). A total of 839 patients aged 0–24 years had been diagnosed with thyroid carcinoma (PTC: 594 (71%), FTC: 128 (15%), MTC: 114 (14%)) between 1990 and 2019. The incidence of PTC increased significantly over time (AAPC +3.6%; 95%CI +2.3 to +4.8), the incidence rate of FTC showed a stable trend ((AAPC −1.1%; 95%CI −3.4 to +1.1), while the incidence of MTC decreased significantly (AAPC: −4.4% (95%CI −7.3 to −1.5). The 10-year OS was 99.5% (1990–1999) and 98.6% (2000–2009) in patients with DTC and 92.4% (1990–1999) and 96.0% (2000–2009) in patients with MTC. In this nationwide study, a rising incidence of PTC and decreasing incidence of MTC were observed. For both groups, in spite of the high proportion of patients with lymph node involvement at diagnosis for DTC and the limited treatment options for MTC, 10-year OS was high.


2021 ◽  
Vol 39 (28_suppl) ◽  
pp. 3-3
Author(s):  
Janneke van Roij ◽  
Natasja Raijmakers ◽  
Laurien Ham ◽  
Marieke van den Beuken-van Everdingen ◽  
Ben van den Borne ◽  
...  

3 Background: Previous studies on experienced quality of care and quality of life have not addressed the reciprocal relation between patients and their relatives. For the first time we were able to include almost 700 couples (patient – relative) in a palliative oncological care context. This study aims to assess the experienced quality of care and emotional functioning (EF) of patients with advanced cancer and their relatives, including their reciprocal relation by using a dyadic approach. Methods: A prospective multicentre observational study among patients with advanced cancer and their relatives, recruited from 40 hospitals in the Netherlands or self-enrolled between November 2017 and January 2020 (eQuiPe study). Patients with metastatic cancer and their relatives were eligible to participate. Respondents completed a questionnaire and clinical data of the patient were obtained by linking the information to the Netherlands Cancer Registry (NCR). Logistic regression analyses were performed on baseline data of 1,103 patients and 831 relatives to assess the association between experienced quality of care and EF of patients and relatives separately and across dyads. Results: In total, 1,103 (65%) patients and 831 (71%) relatives completed the baseline questionnaire, including 699 unique patient-relative couples. Patients experienced lower levels of quality of life, including EF, and more symptoms compared to the normative population ( p<.001). Relatives reported even clinically relevantly lower EF compared to patients (69 vs. 78, p<.001) and were less satisfied with care (59 vs. 74; p<.001). Being more satisfied with care in general ( p<.05) and clarity about who their central health care professional ( p<.05) were positively associated with high EF in patients. For relatives, perceived continuity of care ( p<.01) and continuity of information for the patient ( p<.05) were positively associated with high EF. Dyadic analyses showed that EF of patients ( p<.001) and relatives ( p<.001) was positively associated with EF of the other person and perceived continuity of care by relatives was positively associated with high EF in patients ( p<.01). Conclusions: Experienced integral organisation and satisfaction with care in patients and relatives are related to their EF. The additional reciprocal relation between patients’ and their relatives’ EF and the experienced continuity of care suggests the opportunity for a family‐centered approach to optimize advanced cancer care.


Author(s):  
Dounya Schoormans ◽  
Bonita van Es ◽  
Floortje Mols ◽  
Dareczka Wasowicz ◽  
Sandra Beijer ◽  
...  

Abstract Purpose Common residual symptoms among survivors of colorectal cancer (CRC) are sleep difficulties and gastrointestinal symptoms. Among patients with various gastrointestinal (inflammatory) diseases, sleep quality has been related to gastrointestinal symptoms. For CRC survivors, this relation is unclear; therefore, we examined the association between sleep quality and quantity with gastrointestinal symptoms among CRC survivors. Methods CRC survivors registered in the Netherlands Cancer Registry—Southern Region diagnosed between 2000 and 2009 received a survey on sleep quality and quantity (Pittsburgh Sleep Quality Index) and gastrointestinal symptoms (European Organisation for Research and Treatment of Cancer, Quality of Life Questionnaire-Colorectal 38, EORTC QLQ-CR38) in 2014 (≥ 4 years after diagnosis). Secondary cross-sectional data analyses related sleep quality and quantity separately with gastrointestinal symptoms by means of logistic regression analyses. Results In total, 1233 CRC survivors were included, of which 15% reported poor sleep quality. The least often reported gastrointestinal symptom was pain in the buttocks (15.1%) and most often reported was bloating (29.2%). CRC survivors with poor sleep quality were more likely to report gastrointestinal symptoms (p’s < 0.01). Survivors who slept < 6 h were more likely to report symptoms of bloating or flatulence, whereas survivors who slept 6–7 h reported more problems with indigestion. Conclusions Worse sleep quality and short sleep duration were associated with higher occurrence of gastrointestinal symptoms. Implications for cancer survivors Understanding the interplay between sleep quality and gastrointestinal symptoms and underlying mechanisms adds to better aftercare and perhaps reduction of residual gastrointestinal symptoms in CRC survivors by improving sleep quality.


2021 ◽  
Vol 34 (Supplement_1) ◽  
Author(s):  
Josianne Luijten ◽  
Linda Brom ◽  
Grard Nieuwenhuijzen ◽  
Marjan Westerman ◽  
Pauline Vissers ◽  
...  

Abstract   The probability of undergoing treatment with curative intent according to the hospital of diagnosis has been shown to vary considerately for esophagogastric cancer. Little is known about which factors attribute to practice variation. The aim of this study is to investigate the possible differences in treatment decision-making (TDM) after the Multi-Disciplinary Team Meeting (MDTM) advice. Methods To gain in-depth understanding of TDM quantitative data was gathered by the Netherlands Cancer Registry (i.e., proposed treatment and received treatment) and clinician’s and patient’s perspectives were assessed. In eight hospitals, 26 outpatient clinic consults were observed, 30 in-depth interviews with clinicians were conducted, and 3 focus groups with patients were conducted. In addition, focus groups with clinicians were held to enrich and further explore the gathered data. Thematic content analysis approach was used. Results Surgery with curative intent was proposed during the MDTM in 63%,65% and 72% in patients diagnosed with esophageal cancer in a hospital with respectively low, middle, or a high probability of undergoing treatment with curative intent, respectively. For gastric cancer this was 75%, 82%, 82%, respectively. Changes in the MDTM proposal and received treatment occurred rarely. Clinicians held similar opinions regarding TDM, however its implementation into practice varied. Differences consisted of discussing all treatment options versus only the most fitting treatment option, and the thoroughness of discussing the benefits and harms. Most patients wished to undergo treatment with curative intent. Conclusion Differences in the believes and personalities of the attending clinicians might attribute to variation in TDM. Variation in practice according to the hospital of diagnosis was mainly observed in the MDTM proposal as hospitals with a high probability of undergoing treatment with curative intent proposed surgery more often. Changes in the MDTM proposal and received treatment occurred rarely.


Sign in / Sign up

Export Citation Format

Share Document