Improved survival for adolescents and young adults with Hodgkin lymphoma and continued high survival for children in the Netherlands: a population-based study during 1990-2015.

Population-based studies that assess long-term patterns of incidence, major aspects of treatment and survival are virtually lacking for Hodgkin lymphoma (HL) at a younger age. This study assessed the progress made for young patients with HL (<25 years at diagnosis) in the Netherlands during 1990-2015. Patient and tumour characteristics were extracted from the population-based Netherlands Cancer Registry. Time trends in incidence and mortality rates were evaluated with average annual percentage change (AAPC) analyses. Stage at diagnosis, initial treatments and site of treatment were studied in relation to observed overall survival (OS). A total of 2619 patients with HL were diagnosed between 1990 and 2015. Incidence rates increased for 18-24-year-old patients (AAPC + 1%, P = 0·01) only. Treatment regimens changed into less radiotherapy and more 'chemotherapy only', different for age group and stage. Patients aged 15-17 years were increasingly treated at a paediatric oncology centre. The 5-year OS for children was already high in the early 1990s (93%). For patients aged 15-17 and 18-24 years the 5-year OS improved from 84% and 90% in 1990-1994 to 96% and 97% in 2010-2015, respectively. Survival for patients aged 15-17 years was not affected by site of treatment. Our present data demonstrate that significant progress in HL treatment has been made in the Netherlands since 1990.

Sex differences in melanoma survival are not related to mitotic rate of the primary tumor.

PURPOSE: Based on prior studies, we concluded that the female advantage in melanoma survival is caused by biological factors and not by differences in patient behavior. In this study, we investigated whether this biological advantage was caused by more aggressive tumors in males, as measured by mitotic rate (MR). METHODS: Data for patients with complete information on MR, Breslow thickness, ulceration and primary tumor location were extracted from the database of Melanoma Institute Australia in Sydney. A negative binomial regression model was used to assess the independent predictive value of sex for MR. Also, the impact of MR on the sex survival advantage was investigated using Cox proportional hazards models. RESULTS: A total of 9,306 patients were included in the analysis. Although males had a slightly higher MR at diagnosis, sex was not an independent predictor of MR after adjustment for all other prognostic factors: incidence rate ratio 0.98, 95 % confidence interval (CI) 0.93-1.02, p = 0.32. After adjustment for all prognostic factors, females had a survival advantage of 36 % (hazard ratio 0.65, 95 % CI 0.55-0.75, p < 0.001). When added as a confounder, MR did not influence this sex hazard ratio. CONCLUSIONS: Sex did not independently predict the aggressiveness of a primary melanoma. Furthermore, MR did not influence the known female survival advantage. Based on these results, the biological trait underlying sex survival differences in melanoma seems not to be tumor-related and therefore is more likely to be caused by host factors.

Trends in incidence, treatment and survival of aggressive B-cell lymphoma in the Netherlands 1989-2010.

Only a small number of patients with aggressive B-cell lymphoma take part in clinical trials, and elderly patients in particular are under-represented. Therefore, we studied data of the population-based nationwide Netherlands Cancer Registry to determine trends in incidence, treatment and survival in an unselected patient population. We included all patients aged 15 years and older with newly diagnosed diffuse large B-cell lymphoma or Burkitt lymphoma in the period 1989-2010 and mantle cell lymphoma in the period 2001-2010, with follow up until February 2013. We examined incidence, first-line treatment and survival. We calculated annual percentage of change in incidence and carried out relative survival analyses. Incidence remained stable for diffuse large B-cell lymphoma (n=23,527), while for mantle cell lymphoma (n=1,634) and Burkitt lymphoma (n=724) incidence increased for men and remained stable for women. No increase in survival for patients with aggressive B-cell lymphoma was observed during the period 1989-1993 and the period 1994-1998 [5-year relative survival 42% (95%CI: 39%-45%) and 41% (38%-44%), respectively], but increased to 46% (43%-48%) in the period 1999-2004 and to 58% (56%-61%) in the period 2005-2010. The increase in survival was most prominent in patients under 65 years of age, while there was a smaller increase in patients over 75 years of age. However, when untreated patients were excluded, patients over 75 years of age had a similar increase in survival to younger patients. In the Netherlands, survival for patients with aggressive B-cell lymphoma increased over time, particularly in younger patients, but also in elderly patients when treatment had been initiated. The improvement in survival coincided with the introduction of rituximab therapy and stem cell transplantation into clinical practice.

Impact of active surveillance, chlorambucil, and other therapy on health-related quality of life in patients with CLL/SLL in the Netherlands.

As survival of patients with chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL) increases and the number of patients who live long rises, health-related quality of life (HRQoL) becomes a relevant endpoint. Few studies investigated this, mainly as a secondary endpoint in randomized clinical trials where patients with early stage CLL/SLL, and elderly/frail patients were underrepresented. The aim of our study was to assess HRQoL in a population-based setting, including these previously underrepresented patients. Out of 175 patients diagnosed with CLL/SLL between 2004 and 2011, 136 (78 %) returned the HRQoL questionnaire. The outcomes were compared to an age- and sex-matched norm population. Detailed data on stage and treatment were extracted from a population-based hematological registry (PHAROS). Patients ever treated for CLL/SLL reported significantly poorer HRQoL than the norm population (p < 0.01 with large clinically important differences. Interestingly, no differences were observed between the norm population and patients under active surveillance. In contrast to our hypothesis, patients treated with chlorambucil reported the lowest HRQoL scores. Drastic, long-lasting negative effects of starting treatment on HRQoL cannot be excluded, whereas active surveillance does not seem to provoke worrying, anxiety, or depressive symptoms. Further elaborate research into the impact of starting therapy on HRQoL is needed, especially in patients that are underrepresented in most clinical trials, and thoroughly consider its results during revision of treatment guidelines.

Effects of age and comorbidity on treatment and survival of patients with muscle-invasive bladder cancer.

Our study assessed whether rising age, socioeconomic status (SES) and the presence of serious comorbidity affected treatment choice and survival in a population-based series of patients with muscle-invasive bladder cancer (MIBC) in The Netherlands. Therefore, a consecutive series was studied, including all patients diagnosed with MIBC between 1995 and 2009 in the Eindhoven Cancer Registry, preceding centralization of cystectomy. The independent effects of age, SES and serious comorbidity on therapy choice and their effects on overall survival were estimated by multivariate logistic regression and multivariate Cox proportional hazard analyses, respectively. Out of the 2,445 patients, 38% were aged ≥ 75 years at diagnosis and 63% had at least one serious comorbid condition. Higher age and serious comorbidity were independent predictors for abstaining from cystectomy, where SES was not (61-74 vs. ≤ 60: odds ratio [OR], 0.8; 95% confidence interval [CI], 0.6-1.0; ≥ 75 vs. ≤ 60: OR, 0.1; 95% CI,0.1-0.2; one comorbid condition vs. none: OR, 0.7; 95% CI, 0.5-0.9; two vs. none: OR, 0.6; 95% CI, 0.5-0.8). Patients undergoing cystectomy, external beam radiotherapy or interstitial radiotherapy survived longer independent of age, SES and serious comorbidity (hazard ratio [HR]: 0.4; 95% CI: 0.4-0.5; HR: 0.8; 95% CI: 0.7-0.9; HR: 0.4; 95% CI: 0.3-0.5, respectively). Consequently, preceding centralization of cystectomy, higher age and serious comorbidity were independent predictors for abstaining from cystectomy owing to an expected high rate of short-term medical problems. As cystectomy is associated with a better survival, independently of age, SES and serious comorbidity, it can be questioned whether cystectomy has been underutilised in elderly and in patients with serious comorbidity. Centralization might be a solution for this suggested underutilisation.

Incident cancer risk after the start of aspirin use: results from a Dutch population-based cohort study of low dose aspirin users.

Observational and intervention studies suggest that low dose aspirin use may prevent cancer. The objective of this study was to investigate the protective effect of long term low dose aspirin use (≤100 mg daily) on cancer in general and site-specific cancer among low dose aspirin users in the Dutch general population. We conducted a population-based cohort study with detailed information on aspirin exposure and cancer incidence. Only incident (new) low dose aspirin users, who were included in the linkage between PHARMO and the Eindhoven Cancer Registry (1998-2010) and free of cancer before the start of follow up were included. A Cox proportional hazard model with cumulative aspirin use as a time-varying determinant was used to obtain hazard ratios (HR). Duration of aspirin use amongst 109,276 incident low dose aspirin users was not associated with a decreased risk of any of the site-specific cancers or cancer in general (adjusted HR per year of aspirin use for all cancers: 1.02, 95% confidence interval [CI] 1.00-1.04, HR of >6 years aspirin use compared to <2 years: 1.17, 95% CI 1.02-1.34). After adjusting for current and past aspirin use, 2-6 years of low dose aspirin use was associated with a reduced colorectal cancer risk compared to <2 years of aspirin use (adjusted HR 0.75, 95% CI 0.59-0.96). However, a clear dose-response relationship was not observed (adjusted HR >6 years aspirin use 0.95, 95% CI 0.60-1.49). Our results do not support the primary prevention of cancer among long term aspirin users.

Actual prognosis during follow-up of survivors of B-cell non-Hodgkin lymphoma in the Netherlands.

Survival rates determined at diagnosis are often too negative for cancer survivors. Conditional relative survival reflects actual prognosis during follow-up better. Data from all 54,015 patients newly diagnosed in the Netherlands with B-cell non-Hodgkin lymphoma during 1989-2008, aged 15-89 years (Netherlands Cancer Registry), were used. Five-year conditional relative survival was computed for every additional year of survival up to 16 years after diagnosis, according to entity, grade, gender, age, and Ann Arbor stage. The prognosis for survivors of indolent B-cell non-Hodgkin lymphoma improved slightly with each additional year survived up to 91%. For patients with aggressive non-Hodgkin lymphoma conditional relative survival improved strongly during the first year after diagnosis (from 48% to 68%) and gradually thereafter to 93% after 16 years. There were differences between morphological entities. Initial differences in conditional relative survival at diagnosis between groups with different disease stages became smaller with increasing number of years survived. Age remained a prognostic indicator, also after prolonged follow-up. These results help caregivers to plan optimal surveillance and inform patients about their actual prognosis during follow-up. Long-lasting excess mortality among patients with B-cell non-Hodgkin lymphoma indicates the need for additional care long after their diagnosis.

Health-related quality of life and persistent symptoms in relation to (R-)CHOP14, (R-)CHOP21, and other therapies among patients with diffuse large B-cell lymphoma: results of the population-based PHAROS-registry.

The increasing number of longer-living patients with diffuse large B-cell lymphoma (DLBCL) and serious side effects of treatment urged us to study the health-related quality of life (HRQoL) and persistent (treatment-related) symptoms in unselected patients after different treatment modalities and compare HRQoL of patients with a normative population. The population-based Eindhoven Cancer Registry was used to select all patients diagnosed with DLBCL from 2004 to 2010. The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) was completed twice, with a 1-year interval. Detailed data on treatment were extracted from the Population-based HAematological Registry for Observational Studies. Two hundred fifty-six patients responded (84 %, T1). Compared to patients treated with rituximab combined with cyclophosphamide, doxorubicin, vincristine, and prednisone every 21 days ((R-)CHOP21), those who underwent (R-)CHOP14 more often reported tingling in the hands and feet (27 vs 42 %, p = 0.02) and fatigue (35 vs 46 %, p = 0.03) and reported a lower global health status/HRQoL. Mean HRQoL was statistically and clinically relevantly lower among DLBCL patients compared to a normative population (p < 0.01). Persistent tingling in hands/feet was reported more often by older patients and patients treated with (R-)CHOP14 independently of the other characteristics. Furthermore, patients who reported symptoms exhibited significantly lower HRQoL compared to patients without symptoms/worries. Patients treated with (R-)CHOP14 reported more neuropathic symptoms, more fatigue, and a lower HRQoL than patients treated with (R-)CHOP21. Alertness for persistent symptoms that occur during and after treatment of DLBCL patients is needed and may help to avoid lasting negative influence on their HRQoL.

Patients with prostate cancer continue to have excess mortality up to 15 years after diagnosis.

OBJECTIVE: To estimate the population-based conditional 5-year relative survival rates for patients with prostate cancer (PCa). PATIENTS AND METHODS: All 98 672 patients, aged 45-89 years, diagnosed in the Netherlands with PCa (clinical T stage 1-4) in the period 1989-2008 were selected from the Netherlands Cancer Registry and followed up until 2010. The conditional 5-year relative survival rate was estimated for every subsequent year of survival up to 15 years after diagnosis. RESULTS: The conditional 5-year relative survival rate decreased with survival time from diagnosis. Excess mortality (conditional 5-year relative survival rate <95%) for patients with clinical T1 stage only became manifest 5 years after diagnosis and increased to almost 10% after 10 years. Patients with more advanced disease (cT2-cT4) were found to have an excess mortality rate of 6-12% at diagnosis, which increased to 15-22% after 10 years. Excess mortality occurred earlier for the older age groups. The 5-year relative survival rate at diagnosis was <90% for all age groups of patients with cT3/cT4 disease and excess mortality for this group increased to >20% for those who had already survived for 5 years since diagnosis. CONCLUSIONS: Patients with PCa were found to have excess mortality within 10 years of diagnosis. Excess mortality was found at an earlier timepoint for patients with a more advanced stage and for older age groups. Quantitative insight into conditional survival is useful for caregivers to help plan optimum cancer treatment and surveillance and to inform patients about their actual prognosis during follow-up, taking the current condition of the patient into account.

Impact of therapy and disease-related symptoms on health-related quality of life in patients with follicular lymphoma: results of the population-based PHAROS-registry.

OBJECTIVES: The increasing number of longer living patients with follicular lymphoma (FL) and serious side effects of treatment urged us to study the health-related quality of life (HRQoL) and persistent (treatment-related) symptoms in unselected patients after different treatment modalities and compare HRQoL of patients with a normative population. METHODS: The population-based Eindhoven Cancer Registry was used to select patients diagnosed with FL during 2004-2010. The European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) was completed twice, with a 1-yr interval. This questionnaire was also completed by an age- and sex-matched normative population (N = 580). Detailed data on treatment were extracted from the cancer registry and Population-based HAematological Registry for Observational Studies (PHAROS). RESULTS: Of the 181 patients who were invited, 148 responded (82%, T1). Patients treated with immunochemotherapy reported clinically relevant higher mean fatigue scores than those who underwent radiotherapy (P = 0.02). No differences were observed on the other HRQoL scales between treatment groups. Mean HRQoL scores were worse for FL patients treated with immunochemotherapy compared with a normative population (P < 0.01). A quarter to 50% of patients persistently reported to be slowed down, lethargic, or persistently worried about future health or was limited in social activities. Subsequently, patients reporting these symptoms/worries had a lower global health status/HRQoL. CONCLUSION: Alertness for persistent symptoms that occur during and after treatment of FL patients is needed and may help to avoid lasting negative influence on their HRQoL.

Markedly increased incidence and improved survival of testicular cancer in the Netherlands.

BACKGROUND: Worldwide marked changes have been observed in the incidence and survival of testicular cancer (TC) during the last decades. We conducted a study on trends in TC incidence, treatment, survival, and mortality in the Netherlands during the period 1970-2009 with specific focus on trends according to age, histology and stage of disease. METHODS: Data from the Eindhoven cancer registry, the Netherlands cancer registry and Statistics Netherlands was used. Age-standardized incidence and mortality rates and five-year relative survival were calculated. Treatment was categorized into five major groups. RESULTS: TC incidence showed a substantial annual increase of 3.9% in the period 1989-2009. The incidence increased for all stages of both seminoma and non-seminoma TC. Stage distribution for the non-seminoma patients shifted towards more localized disease. Most patients received primary treatment according to the guidelines. Five-year relative survival improved (non-significantly) for most groups of stage and histology. TC mortality dropped sharply in the 1970s and 1980s and remained relatively stable thereafter. CONCLUSION: This study shows that incidence of TC has increased sharply in the Netherlands. Relative survival is high and improved in most disease stages. There is a growing demand for medical care of newly diagnosed TC patients and for the rapidly increasing number of prevalent TC patients.

Population-based cancer registries for quality-of-life research: a work-in-progress resource for survivorship studies?

BACKGROUND: With the increasing number and diversity of cancer survivors, studies of survivors' physical, emotional, and social health and well being are of growing importance. Population-based cancer registries, which collect data on incident cases, can play an important role in quality-of-life (QoL) studies. In this review, the authors provide an overview of QoL studies that have used cancer registry data in this emerging area of research. METHODS: Publication databases were searched for relevant peer-reviewed original articles published between 2001 and mid-2011. Inclusion criteria were articles published in English that used cancer registries as the sampling frame and/or that used registry data in analyses with QoL data. All included articles were assessed on the quality of information provided, cancer registry procedures, and study design. RESULTS: In total, 173 articles from 13 countries were reviewed, and a large proportion were from the United States (n = 72) and Europe (n = 70). Fourteen different malignancies were studied, and the most frequent were breast cancer. Most studies focused on adult survivors, and only 4 focused on the elderly (aged >70 years). Of the reviewed articles, 110 (64%) provided a good amount of information on the cancer registry. Information less frequently reported included mainly follow-up of vital status and characteristics of respondents/nonrespondents. CONCLUSIONS: QoL studies increasingly use population-based registries, which provide important clinical variables and an excellent sampling frame for identifying subgroups. Until now, most studies have tended to focus on more prevalent cancers, and surprisingly few studies have focused on QoL of elderly survivors, who remain understudied in clinical trials.

A high level of fatigue among long-term survivors of non-Hodgkin's lymphoma: results from the longitudinal population-based PROFILES registry in the south of the Netherlands.

The course of fatigue and quality of life in survivors of non-Hodgkin's lymphoma is unknown. The aims of this study were, therefore, to assess fatigue and quality of life in patients with non-Hodgkin's lymphoma following primary treatment, compare fatigue and quality of life in these patients with those of an age- and sex matched normative population to assess the severity of concerns and identify associations with fatigue of survivors who remained fatigued. The population-based Eindhoven Cancer Registry was used to select all patients diagnosed with non-Hodgkin's lymphoma from 1999-2009. The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire and the Fatigue Assessment Scale were completed once by 824 survivors of non-Hodgkin's lymphoma (80% response rate); 434 survivors completed these questionnaires again 1 year later. Survivors of non-Hodgkin's lymphoma reported more clinically relevant fatigue up till 10 years post-diagnosis compared to a normative population (P<0.001). Mean fatigue scores remained fairly stable over time (T1: x=28, SD=26; T2: x=30, SD=27, P=0.14): 22-28% of survivors reported deterioration, 19-23% reported improvement and 44-54% reported constant fatigue. Survivors who reported constant fatigue were more often diagnosed with stage IV disease and had more comorbid diseases. They were additionally more often female and divorced. Having comorbidities and being without a partner were also associated with constant fatigue in the normative population. In conclusion, six out of every ten responding non-Hodgkin's lymphoma survivors reported a high level of fatigue up till 10 years after diagnosis. Mean fatigue scores remained stable over time and survivors reporting constant fatigue more often had stage IV disease at diagnosis and comorbidities.

Major changes in chemotherapy regimens administered to breast cancer patients during 2000-2008 in the Netherlands.

There is little information available on the patterns of chemotherapy regimens administered in daily practice to patients with early stage and metastatic or recurrent breast cancer. To determine the trends in type of chemotherapy regimens used in breast cancer patients, newly diagnosed breast cancer patients in the period 2000-2008 who received chemotherapy were identified from the Eindhoven Cancer Registry (ECR) and linked to the PHARMO RLS, including data on, e.g., in- and outpatient drug use. Chemotherapy regimens were classified based on the received combinations and sequences. Trends in the distribution of adjuvant chemotherapy regimens (for early-stage breast cancer) and palliative chemotherapy regimens (for metastatic or recurrent breast cancer) were determined and stratified by Her2/neu status when possible. In this study, 422 patients diagnosed with early-stage breast cancer received adjuvant chemotherapy. The use of CMF (cyclophosphamide, methotrexate, and 5-fluorouracil) decreased from 90% in 2000 to almost none since 2005. Administration of regimens that included anthracyclines increased from 4% in 2000 to 96% in 2005, but decreased to 68% in 2008. The use of trastuzumab- and taxane-containing regimens (with or without anthracyclines) increased from 2005 onwards to 24% and 34%, respectively, in 2008. Among the 82 breast cancer patients who received palliative chemotherapy at diagnosis or after breast cancer recurrence, the use of CMF and anthracyclines (without taxanes) decreased, while the use of taxanes (with or without anthracyclines) increased (26% in 2008). Trastuzumab was used as palliative chemotherapy from 2003 onwards, with 22% of the metastatic breast cancer patients receiving trastuzumab-containing regimens in 2008, and bevacizumab was administered since 2007 with 19% of the patients receiving bevacizumab-containing regimens in 2008. In conclusion, major changes have taken place in the chemotherapeutic treatment of patients with early and recurrent breast cancer. These changes reflect the key findings from large clinical trials, as incorporated in the Dutch guidelines.

Progress against cancer in the Netherlands since the late 1980s: an epidemiological evaluation.

Progress against cancer through prevention and treatment is often measured by survival statistics only instead of analyzing trends in incidence, survival and mortality simultaneously because of interactive influences. This study combines these parameters of major cancers to provide an overview of the progress achieved in the Netherlands since 1989 and to establish in which areas action is needed. The population-based Netherlands Cancer Registry and Statistics Netherlands provided incidence, 5-year relative survival and mortality of 23 major cancer types. Incidence, survival and mortality changes were calculated as the estimated annual percentage change. Optimal progress was defined as decreasing incidence and/or improving survival accompanied by declining mortality, and deterioration as increasing incidence and/or deteriorating survival accompanied by increasing mortality rates. Optimal progress was observed in 12 of 19 cancer types among males: laryngeal, lung, stomach, gallbladder, colon, rectal, bladder, prostate and thyroid cancer, leukemia, Hodgkin and non-Hodgkin lymphoma. Among females, optimal progress was observed in 12 of 21 cancers: stomach, gallbladder, colon, rectal, breast, cervical, uterus, ovarian and thyroid cancer, leukemia, Hodgkin and non-Hodgkin lymphoma. Deterioration occurred in three cancer types among males: skin melanoma, esophageal and kidney cancer, and among females six cancer types: skin melanoma, oral cavity, pharyngeal, esophageal, pancreatic and lung cancer. Our conceptual framework limits misinterpretations from separate trends and generates a more balanced discussion on progress.

The hospital standardized mortality ratio fallacy: a narrative review.

BACKGROUND: Outcome measures, like hospital standardized mortality ratios (HSMRs), are increasingly used to assess quality of care. The validity of HSMRs and their accuracy to reflect quality of care is heavily contested. OBJECTIVE: We explored apparent and potential shortcomings and adverse effects of the HSMR in the assessment of quality of care. RESEARCH DESIGN AND METHODS: For this narrative review, relevant articles were collected from Medline databases using the following search terms: "hospital standardized mortality ratio," "standardized mortality ratio," "HSMR," "quality of care," and "in-hospital mortality." In addition, other important articles were subtracted from the reference lists of the primary articles. RESULTS: The current literature exhibits important shortcomings of the HSMR that in particular affect hospitals providing specialized care of a certain level of complexity. Because of the lack or insufficiency of data concerning case-mix, coding variation between hospitals, disease severity, referral bias, end-of-life care, and place of death, the current HSMR model is not able to adjust adequately for these aspects. This leads to incomparability of HSMRs between hospitals. Instead of separate aspects of continuity of care, all factors contributing to quality of care should be considered. CONCLUSIONS: Given the several shortcomings, use of the HSMR as an indicator of quality of care can be considered as a fallacy. Publication of the HSMR is not likely to lead to improvement of quality of care and might harm both hospitals and patients.

Survival after treatment for carcinoma invading bladder muscle: a Dutch population-based study on the impact of hospital volume.

UNLABELLED: Study Type - Prognosis (cohort). Level of Evidence 2a. What's known on the subject? and What does the study add? The subject of mortality and survival rates after radical cystectomies in high-volume hospitals in comparison to low-volume hospitals has been extensively studied. Postoperative mortality is known to be significantly lower with high-volume providers, but for survival rates there was only a trend forwards this finding. For this reason, we performed this Dutch population-based study on survival rates, to see if we had enough power to support this trend with significant findings. To our knowledge, this is the first study of good quality showing a significant beneficial effect for survival in high-volume hospitals. OBJECTIVE: • To examine the volume-outcome relationship for carcinoma invading bladder muscle (MIBC) with respect to differences in survival rates among all hospitals in the Netherlands as a guide for regionalization initiatives. MATERIALS AND METHODS: • This population-based retrospective study included all patients (n= 13 033) newly diagnosed with MIBC during the period 1999-2008 in the Netherlands, selected from the Netherlands Cancer Registry. • Data were collected on demographics, morphology, stage at diagnosis and after surgery, primary treatment, vital status and date of follow-up or death. • The relative survival rate (RSR) per treatment was analysed for age, stage and hospital surgical volume. RESULTS: • Overall 5 and 10-year RSR for all treatments of MIBC was 32% and 25%, respectively. • Although 71.7% of the patients featured stages II and III, radical cystectomy was only performed in only 42% and 44% of these patients, respectively. • Relative survival for MIBC remained unchanged in the two consecutive time periods (1999-2003 and 2004-2008). • In all, 34% of patients diagnosed in low-volume hospitals (<10 cystectomies/year) underwent cystectomy vs 42% of those diagnosed in high-volume hospitals (P= 0.000). • In a multivariate analysis long-term survival (>30 days after surgery) was significantly lower in patients after cystectomy for stage II/III in low-volume hospitals (hazard ratio [HR] 1.17, P= 0.036). A high lymph node count (>20) was associated with a lower risk of death (HR 0.52, P= 0.000). CONCLUSIONS: • The 10-year RSR for patients with MIBC in the Netherlands was modest (25%) and has remained unchanged in the last decade. • The chance of undergoing cystectomy is significantly higher in high-volume hospitals. Long-term survival after cystectomy is higher in high-volume hospitals. • Regionalization of bladder cancer treatments could improve overall outcomes.

Scalp cooling for hair preservation and associated characteristics in 1411 chemotherapy patients - results of the Dutch Scalp Cooling Registry.

BACKGROUND: Chemotherapy-induced alopecia is a frequently occurring side effect of cancer treatment with a high psychological impact which can be prevented by scalp cooling. With this multi-centre patient series we estimated the results of scalp cooling for currently used chemotherapies to provide patient information and we identified characteristics associated with the results. MATERIAL AND METHODS: The Dutch Scalp Cooling Registry collected data on scalp-cooled patients in 28 Dutch hospitals. Nurses and patients completed questionnaires on patients, chemotherapy and scalp cooling characteristics. Logistic regression analysis was used to examine associated characteristics of the scalp cooling result. RESULTS: Overall, 50% of the 1411 scalp-cooled patients did not wear a head cover during their last chemotherapy session. Patients were satisfied with the results in 8% of cases after TAC chemotherapy and up to 95% after paclitaxel treatment. Besides type of chemotherapy, higher dose and shorter infusion time, older age, female gender and non-West-European type of hair significantly increased the proportion head cover use. Hair length, quantity, chemical manipulation (dyeing, waving, colouring), wetting hair before scalp cooling, and treatment with chemotherapy ever before did not influence the degree of head covering among patients. CONCLUSIONS: Scalp cooling results as recorded in this open patient registry were positive for most regimens, justifying it's use by all eligible patients, except for those needing TAC. Lengthening infusion time may improve the results.

Record linkage for pharmacoepidemiological studies in cancer patients.

BACKGROUND: An increasing need has developed for the post-approval surveillance of (new) anti-cancer drugs by means of pharmacoepidemiology and outcomes research in the area of oncology. OBJECTIVES: To create an overview that makes researchers aware of the available database linkages in Northern America and Europe which facilitate pharmacoepidemiology and outcomes research in cancer patients. METHODS: In addition to our own database, i.e. the Eindhoven Cancer Registry (ECR) linked to the PHARMO Record Linkage System, we considered database linkages between a population-based cancer registry and an administrative healthcare database that at least contains information on drug use and offers a longitudinal perspective on healthcare utilization. Eligible database linkages were limited to those that had been used in multiple published articles in English language included in Pubmed. The HMO Cancer Research Network (CRN) in the US was excluded from this review, as an overview of the linked databases participating in the CRN is already provided elsewhere. Researchers who had worked with the data resources included in our review were contacted for additional information and verification of the data presented in the overview. RESULTS: The following database linkages were included: the Surveillance, Epidemiology, and End-Results-Medicare; cancer registry data linked to Medicaid; Canadian cancer registries linked to population-based drug databases; the Scottish cancer registry linked to the Tayside drug dispensing data; linked databases in the Nordic Countries of Europe: Norway, Sweden, Finland and Denmark; and the ECR-PHARMO linkage in the Netherlands. Descriptives of the included database linkages comprise population size, generalizability of the population, year of first data availability, contents of the cancer registry, contents of the administrative healthcare database, the possibility to select a cancer-free control cohort, and linkage to other healthcare databases. CONCLUSIONS: The linked databases offer a longitudinal perspective, allowing for observations of health care utilization before, during, and after cancer diagnosis. They create new powerful data resources for the monitoring of post-approval drug utilization, as well as a framework to explore the (cost-)effectiveness of new, often expensive, anti-cancer drugs as used in everyday practice.

Incidence and survival trends of uncommon corpus uteri malignancies in the Netherlands, 1989-2008.

INTRODUCTION: Corpus uteri cancer is the most common malignancy of the female reproductive tract in industrialized countries, and its incidence is increasing. Although most of these tumors are of the common endometrial type, there are also many uncommon tumors of the corpus uteri. We examined the incidence and survival of patients with uncommon epithelial tumors, carcinosarcomas, and sarcomas of the corpus uteri diagnosed since 1989. METHODS: All common and uncommon malignancies of the corpus uteri registered in the nationwide population-based Netherlands Cancer Registry (NCR) during 1989-2008 were included (n = 30,960). The histological subtypes were described according to the Blaustein classification system. Age-standardized incidence for 1989-2008 was calculated per 1,000,000 person-years (p-y), and relative survival was calculated according to the type of uncommon tumor. RESULTS: The incidence of corpus uteri malignancies increased from 159 to 177 per 1,000,000 p-y, mainly owing to the rise in endometrioid adenocarcinomas from 106 to 144 per 1,000,000 p-y. In contrast, the incidence of uncommon epithelial endometrial carcinomas (UEECs) decreased from 30 to 13 per 1,000,000 p-y, although carcinosarcomas increased slightly from 5.1 to 6.9 per 1,000,000 p-y. Furthermore, a remarkable shift in incidence of endometrial stromal cell sarcomas (ESS) was observed from high-grade ESSs to low-grade ESSs after 2003. Five-year relative survival for patients with UEEC decreased from 72% to 54% and for patients with serous adenocarcinoma from 73% to 51%. Coinciding with an increase in the incidence of common adenocarcinoma of the corpus uteri, there was a decline in uncommon adenocarcinomas and more or less a stable incidence of sarcomas and carcinosarcomas. CONCLUSION: The decrease in UEEC tumors consisted largely of fewer serous carcinomas, possibly and likely reflecting a more precise histopathological classification of villoglandular tumors. Unfortunately, relative survival for patients with UEEC, sarcomas, and carcinosarcomas did not improve over the study period, indicating a need for more research on treatment strategies for this group of patients.