Quality of surgery and treatment and its association with hospital volume: A population-based study in more than 5000 Belgian ovarian cancer patients.

BACKGROUND: Different sets of quality indicators are used to identify areas for improvement in ovarian cancer care. This study reports transparently on how (surgical) indicators were measured and on the association between hospital volume and indicator results in Belgium, a country setting without any centralisation of ovarian cancer care. METHODS: From the population-based Belgian Cancer Registry, patients with a borderline malignant or invasive epithelial ovarian tumour diagnosed between 2014 and 2018 were selected and linked to health insurance and vital status data (n = 5119). Thirteen quality indicators on diagnosis and treatment were assessed and the association with hospital volume was analysed using logistic regression adjusted for case-mix. RESULTS: The national results for most quality indicators on diagnosis and systemic therapy were around the predefined target value. Other indicators showed results below the benchmark: genetic testing, completeness of staging surgery, lymphadenectomy with at least 20 pelvic/para-aortic lymph nodes removed, and timely start of chemotherapy after surgery (within 42 days). Ovarian cancer care in Belgium is dispersed over 100 hospitals. Lower volume hospitals showed poorer indicator results compared to higher volume hospitals for lymphadenectomy, staging, timely start of chemotherapy and genetic testing. In addition, surgery for advanced stage tumours was performed less often in lower volume hospitals. CONCLUSIONS: The indicators that showed poorer results on a national level were also those with poorer results in lower-volume hospitals compared to higher-volume hospitals, consequently supporting centralisation. International benchmarking is hampered by different (surgical) definitions between countries and studies.

Survival of patients with unfavorable prognosis cutaneous melanoma with increased use of immunotherapy agents: a population-based study in Belgium.

BACKGROUND: Although metastatic cutaneous melanoma is associated with an unfavorable prognosis, innovative therapies including immunomodulating agents and targeted therapies have shown survival benefits in clinical trials. We assessed the impact of the introduction of innovative drugs into clinical practice on the survival of patients with metastatic cutaneous melanoma during the period 2004-2017, in Belgium. The evolution of associated expenses was also analyzed. METHODS: This is a retrospective population-based study using data from the national Belgian Cancer Registry, compulsory health insurance, and administrative survival data. The immunomodulating drugs were ipilimumab, nivolumab and pembrolizumab, while targeted therapies included vemurafenib, dabrafenib and trametinib. RESULTS: We did not identify a trend for improvement over time. Median survival (years) was 1.5 (95% CI: 1.1-1.8) in 2004-2008, 1.1 (95% CI: 0.8-1.5) in 2009-2013, and 1.6 (95% CI: 1.3-2.4) in 2014-2017, respectively. In contrast, survival improved in those with unknown primary tumor localization. In this group, median survival time was 2.0 (95% CI: 1.4-2.9) in the most recent period, while it was 1.1 (95% CI: 0.7-1.3) in 2009-2013, and 0.9 (95% CI: 0.6-1.2) in 2004-2008. The uptake of innovative drugs remained modest, with no drug being used by more than 30% of patients. Yearly expenditure was almost non-existent, and gradually increased, reaching several million euros in 2014-2017. CONCLUSION: Patients with metastatic cutaneous melanoma who were diagnosed between 2004 and 2017 showed no apparent improvement in survival. In contrast, increased survival was observed in the subgroup of patients with unknown primary tumor localization.

Epidemiology and survival of adult-type diffuse glioma in Belgium during the molecular era.

BACKGROUND: Survival data of diffuse adult-type glioma is mostly based on prospective clinical trials or small retrospective cohort studies. Real-world data with large patient cohorts is currently lacking. METHODS: Using the nationwide, population-based Belgian Cancer Registry, all known histological reports of patients diagnosed with an adult-type diffuse glioma in Belgium between 2017 and 2019 were reviewed. The ICD-O-3 morphology codes were matched with the histological diagnosis. The gathered data were transformed into the 2021 World Health Organization classification of CNS tumors using the IDH- and 1p/19q-mutation status. RESULTS: Between 2017 and 2019, 2233 diffuse adult-type gliomas were diagnosed in Belgium. Full molecular status was available in 67.1% of identified cases. The age-standardized incidence rate of diffuse adult-type glioma in Belgium was estimated at 8.55 per 100 000 person-years and 6.72 per 100 000 person-years for grade 4 lesions. Median overall survival time in IDH-wild-type glioblastoma was 9.3 months, significantly shorter compared to grade 4 IDH-mutant astrocytoma (median survival time: 25.9 months). The 3-year survival probability was 86.0% and 75.7% for grades 2 and 3 IDH-mutated astrocytoma. IDH-wild-type astrocytoma has a worse prognosis with a 3-year survival probability of 31.6% for grade 2 and 5.7% for grade 3 lesions. CONCLUSIONS: This registry-based study presents a large cohort of adult-type diffuse glioma with known molecular status and uses real-world survival data. It adds to the current literature which is mainly based on historical landmark trials and smaller retrospective cohort studies.

Association between hospital volume and outcomes in invasive ovarian cancer in Belgium: A population-based study.

OBJECTIVES: To study the association between hospital volume and outcomes in patients with invasive epithelial ovarian cancer (EOC). METHODS: This study included 3988 patients diagnosed with invasive EOC between 2014 and 2018, selected from the population-based database of the Belgian Cancer Registry (BCR), and coupled with health insurance and vital status data. The associations between hospital volume and observed survival since diagnosis were assessed with Cox proportional hazard models, while volume associations with 30-day post-operative mortality and complicated recovery were evaluated using logistic regression models. RESULTS: Treatment for EOC was very dispersed with half of the 100 centres treating fewer than six patients per year. The median survival of patients treated in centres with the highest-volume quartile was 2.5 years longer than in those with the lowest-volume quartile (4.2 years versus 1.7 years). When taking the case-mix of hospitals into account, patients treated in the lowest volume centres had a 47% higher hazard to die than patients treated in the highest volume centres (HR: 1.47, 95% CI: 1.11-1.93, p = 0.006) over the first five years after incidence. A similar association was found when focussing on the surgical volume of the hospitals and considering only operated patients with invasive EOC. Lastly, the 30-day post-operative mortality decreased significantly with increasing surgical volume. CONCLUSIONS: The large dispersion of care and expertise within Belgium and the volume-outcome associations observed in this study support the implementation of the concentration of care for patients with invasive EOC in reference centres.

Stage shift and relative survival for head and neck cancer during the 2020 COVID-19 pandemic: a population-based study of temporal trends.

Objective: During the first wave of the COVID-19 pandemic in 2020, non-essential health services were suspended in Belgium, and the public was ordered to socially isolate. Underdiagnosis of cancer during this period was reported worldwide. Certain risk factors for head and neck cancer (HNC) overlap with those for COVID-19 incidence and mortality, making underdiagnosis and subsequent stage shift of this potentially rapidly progressing cancer a major concern. We aimed to analyze incidence, clinical stage at presentation, and survival of patients diagnosed with HNC in 2020 in Belgium, considering recent temporal trends. Methods: Using population-based data from the Belgian Cancer Registry (BCR), we extrapolated 2017-2019 trends in incidence, clinical stage, and 1-year relative survival (1yRS) of HNC to create an expected value for 2020 and compared this to the observed value. Results: There were 9.5% fewer HNCs diagnosed in 2020, compared to the predicted incidence. Underdiagnosis was larger for males (-11.8%), patients aged 50-64 (-11.2%) and 65-79 (-11.1%), and for oral cavity cancer (-17.6%). Shifts to more advanced stages were observed in larynx and oropharynx tumors and for (male) patients aged 80+. A 2.4 percentage point decline in 1yRS was observed, relative to the increasing trends in 1yRS (2017-2019). Conclusion: The COVID-19 pandemic led to underdiagnosis of HNC, resulting in shifts to more advanced stage at presentation in certain subgroups. A stage shift can be expected for the 9.5% of tumors not yet diagnosed at the end of 2020. HNC patients diagnosed in 2020 suffered higher than expected mortality.

Belgian observational survival data (incidence years 2004-2017) and expenditure for innovative oncology drugs in twelve cancer indications.

BACKGROUND: The Food and Drug Administration and European Medicines Agency typically approve market access for cancer drugs based on surrogate end-points, which do not always translate into substantiated improvements in outcomes that matter the most to patients, i.e. survival and quality of life. These drugs often, also, have a high price tag. We assessed whether there was an increase in cancer drug expenditure for a broad selection of indications, and whether this correlates with increased overall survival. METHODS: This cohort study used Belgian Cancer Registry data from 125,692 patients (12 cancer indications, incidence period 2004-2017), which was linked to reimbursement and survival data. This reliably represents the Belgian situation. One-to-five year observed survival probability, median survival time, oncology drug expenditure and mean oncology drug cost per patient were reviewed. FINDINGS: In almost all indications, total expenditure and average treatment cost for oncology drugs increased over the years (2004-2017). In contrast, mixed findings are observed for the evolution in overall survival probability and median survival time. While an absolute improvement in the 3-year survival probability of about 10% is noticed in non-small-cell lung cancer and chronic myeloid leukaemia, improvements in about half of the other indications are limited or even absent. INTERPRETATION: The Belgian observational data indicate that assuming 'innovative' oncology drugs always add value in terms of improved survival is often unjustified. The literature also highlights the problem of using surrogate end-points, and the lack of comparative evidence showing an added value of oncology drugs for both survival and quality of life at market approval or during the post-marketing phase. Comparative studies should be conducted in the pre-marketing phase that are suitable for registration purposes, aid reimbursement decisions and support physicians and patients when making treatment decisions.

Survival in stage IV ovarian cancer with increased use of debulking surgery and bevacizumab.

OBJECTIVES: Advanced ovarian cancer has a poor prognosis, with a 5 year survival probability of <30%. Attempts to improve survival have focused on debulking surgery and systemic therapy. We assessed the evolution of treatment patterns and survival of patients with advanced epithelial ovarian cancer with specific attention to changes in survival after introducing bevacizumab. METHODS: Population based data from the Belgian Cancer Registry were coupled with administrative reimbursement data from the compulsory health insurance organizations and the national database where date of death is registered, based on the patient's unique national number. Patients with epithelial ovarian cancer stage IV diagnosed in 2004-17 were included. The proportion of patients who underwent debulking surgery and received bevacizumab was calculated per incidence year. Survival was compared for the three incidence periods (2004-08, 2009-13, 2014-17) and before and after the introduction of bevacizumab. RESULTS: 2034 patients with stage IV epitheial ovarian cancer were included. From 2012 onwards, uptake of bevacizumab increased, with 50% of patients with stage IV ovarian cancer diagnosed in 2017 receiving bevacizumab. The proportion of stage IV patients who underwent debulking surgery also increased over time, from 21.1% in 2004-08 to 50.4% and 45.4% in 2009-13 and 2014-17, respectively. The 3 year observed survival probability fluctuated between 27% and 42% without a trend over time. The increase in debulking surgery was associated with improved survival (hazard ratio (HR) 0.88, 95% confidence interval (CI) 0.79 to 0.98) but the introduction of bevacizumab was not (HR 0.94, 95% CI 0.85 to 1.03). For patients diagnosed in 2004, the mean cost per patient treated with oncological drugs was about €12 500, which doubled to about €25 000 for patients diagnosed in 2014 or later. CONCLUSIONS: Despite a rise in the use of debulking surgery and the introduction of bevacizumab into clinical practice, no improvement in 3 year survival probability was observed for patients with advanced ovarian cancer in Belgium.

Cancer Registration, Molecular Marker Status, and Adherence to the WHO 2016 Classification of Pathology Reports for Glioma Diagnosed during 2017-2019 in Belgium.

INTRODUCTION: The objective of this study was to cross-check and, if necessary, adjust registered ICD-O-3 topography and morphology codes with the findings in pathology reports available at the Belgian Cancer Registry (BCR) for glioma patients. Additionally, integration of molecular markers in the pathological diagnosis and concordance with WHO 2016 classification is investigated. METHODS: Since information regarding molecular tests and corresponding conclusions are not available as structured data at population level, a manual screening of all pseudonymized pathology reports available at the BCR for registered glioma patients (2017-2019) was conducted. ICD-O-3 morphology and topography codes from the BCR database (based on information as provided by hospital oncological care programmes and pathology laboratories), were, at tumour level, cross-checked with the data from the pathology reports and, if needed, specified or corrected. Relevant molecular markers (IDH1/2, 1p19q codeletion, promoter region of the MGMT gene [MGMTp]) were manually extracted from the pathology reports. RESULTS: In 95.3% of gliomas, the ICD-O-3 morphology code was correct. Non-specific topography codes were specified in 9.3%, while 3.3% of specific codes were corrected. The IDH status was known in 75.2% of astrocytic tumours. The rate of correct integrated diagnoses varied from 47.6% to 56.4% among different gliomas. MGMTp methylation status was available in 32.2% of glioblastomas. CONCLUSION: Both the integration of molecular markers in the conclusion of the pathology reports and the delivery of those reports to the BCR can be improved. The availability of distinct ICD-O-3 codes for each molecularly defined tumour entity within the WHO classification would increase the consistency of cancer registration, facilitate population level research and international benchmarking.

Impact of the COVID-19 Pandemic on Incidence and Observed Survival of Malignant Brain Tumors in Belgium.

(1) Background: This study evaluates the impact of the COVID-19 pandemic on the incidence, treatment, and survival of adults diagnosed with malignant brain tumors in Belgium in 2020. (2) Methods: We examined patients aged 20 and older with malignant brain tumors (2004-2020) from the Belgian Cancer Registry database, assessing incidence, WHO performance status, vital status, and treatment data. We compared 2020 incidence rates with projected rates and age-standardized rates to 2015-2019. The Kaplan-Meier method was used to assess observed survival (OS). (3) Results: In 2020, there was an 8% drop in age-specific incidence rates, particularly for those over 50. Incidence rates plunged by 37% in April 2020 during the first COVID-19 peak but partially recovered by July. For all malignant brain tumors together, the two-year OS decreased by four percentage points (p.p.) in 2020 and three p.p. in 2019, compared to that in 2015-2018. Fewer patients (-9 p.p.) with glioblastoma underwent surgery, and the proportion of patients not receiving surgery, radiotherapy, or systemic therapy increased by six percentage points in 2020. (4) Conclusions: The COVID-19 pandemic profoundly impacted the diagnosis, treatment strategies, and survival of brain tumor patients in Belgium during 2020. These findings should guide policymakers in future outbreak responses, emphasizing the need to maintain or adapt (neuro)-oncological care pathways and promote informed decision making when care capacity is limited.

Patterns and quality of care for head and neck cancer in Belgium: A population-based study.

OBJECTIVES: We evaluated the quality of care for patients with squamous cell carcinoma (SCC) of the oral cavity, oropharynx, hypopharynx or larynx in Belgium. METHODS: Data of the Belgian Cancer Registry were coupled with health insurance data and hospital discharge data. Quality of care and the association with hospital volume were evaluated based on six quality indicators. RESULTS: Half of the patients were treated with primary radiotherapy, with or without systemic therapy (49.7%) and 38.1% with surgery, with or without (neo)adjuvant therapy. Single-modality treatment was provided to 78.1% of early-disease patients. Of the patients with cN0 disease, 56.4% underwent neck dissection. Postoperative radiotherapy was completed timely in 48.5% of patients. Concomitant chemotherapy was administered to 58.2% of patients <70 years with locally advanced disease. Imaging of the neck after radiotherapy was performed appropriately in 32.7% of patients. Variability between centres was considerable. No clear relationship between hospital volume and results of the individual QIs was observed. CONCLUSIONS: Results show that for the measured QIs, targets are not met and variability between centres is considerable. Through individual feedback, centres are motivated to improve the quality of care for head and neck cancer patients in Belgium.

Improved survival in patients with head and neck cancer treated in higher volume centres: A population-based study in Belgium.

OBJECTIVES: The study investigated the association between hospital volume and observed survival of patients with a head and neck squamous cell carcinoma (HNSCC). METHODS: Overall, 9245 patients diagnosed with HNSCC between 2009 and 2014, were identified in the population-based Belgian Cancer Registry. This database was coupled with other databases providing information on diagnostic and therapeutic procedures, vital status, and comorbidities. The overall and relative survival probabilities were estimated using the Kaplan-Meier and the Ederer II methods, respectively. The relation between hospital volume and observed survival since diagnosis was then assessed using Cox proportional hazard models adjusted for potential confounders. RESULTS: The care for patients with HNSCC in Belgium was dispersed over more than 99 centres with half of the centres treating four or less patients with HNSCC per year. Survival probabilities were significantly better for patients treated in higher volume centres (>20 patients/year): the median survival of patients treated in these centres was 1.1 year longer (5.1 versus 4.0 years) than in lower volume centres. This association was confirmed in analyses taking the case-mix between hospitals into account: the hazard to die of any cause decreased on average with 0.4% per increase of one additionally treated patient. Beyond 20 assigned patients per year, there was no further decrease in the hazard to die. CONCLUSIONS: Statistically significant and clinically relevant improved survival probabilities were obtained in patients treated in higher volume centres (>20 patients/year) compared with their peers treated in lower volume centres. This supports the recommendation to concentrate the care for patients with HNSCC in reference centres.

Comorbidity in head and neck cancer: Is it associated with therapeutic delay, post-treatment mortality and survival in a population-based study?

OBJECTIVES: This study aims to investigate the relationship between comorbidities and therapeutic delay, post-treatment mortality, overall and relative survival in patients diagnosed with squamous cell carcinoma of the head and neck (HNSCC). PATIENTS AND METHODS: 9245 patients with a single HNSCC diagnosed between 2009 and 2014 were identified in the Belgian Cancer Registry. The Charlson Comorbidity Index (CCI) was calculated for 8812 patients (95.3%), distinguishing patients having none (0), mild (1-2), moderate (3-4) or severe comorbidity (>4). The relationship between CCI and therapeutic delay was evaluated using the Spearman correlation. Post-treatment mortality was modelled with logistic regression, using death within 30 days as the event. The association between comorbidity and survival was assessed using Cox proportional hazard models. RESULTS: Among 8812 patients with a known CCI, 39.2% had at least one comorbidity. Therapeutic delay increased from 31 to 36 days when the CCI worsened from 0 to 4 (rho = 0.087). After case-mix adjustment, higher baseline comorbidity was associated with increased post-surgery mortality (mild, OR 3.52 [95% CI 1.91-6.49]; severe, OR 18.71 [95% CI 6.85-51.12]) and post-radiotherapy mortality (mild, OR 2.23 [95% CI 1.56-3.19]; severe, OR 9.33 [95% CI 4.83-18.01]) and with reduced overall survival (mild, HR 1.39, [95% CI 1.31-1.48]; severe, HR 2.41 [95% CI 2.00-2.90]). That was also the case for relative survival in unadjusted analyses (mild, EHR 1.77 [95% CI 1.64-1.92]; severe, EHR = 4.15 [95% CI 3.43-5.02]). CONCLUSION: Comorbidity is significantly related to therapeutic delay, post-treatment mortality, 5-year overall and relative survival in HNSCC patients. Therapeutic decision support tools should optimally integrate comorbidity.

Head and Neck Cancer in Belgium: Quality of Diagnostic Management and Variability Across Belgian Hospitals Between 2009 and 2014.

Aims: The study assessed the quality of diagnosis and staging offered to patients with a head and neck squamous cell carcinoma (HNSCC) and the variability across Belgian hospitals. Methods: In total, 9,245 patients diagnosed with HNSCC between 2009 and 2014, were identified in the population-based Belgian Cancer Registry (BCR). The BCR data were coupled with other databases providing information on diagnostic and therapeutic procedures reimbursed by the compulsory health insurance, vital status data, and comorbidities. The use of diagnosis and staging procedures was assessed by four quality indicators (QI) (i.e., use of dedicated head and neck imaging studies, use of PET-CT, TNM reporting and interval between diagnosis and start of treatment), for which a target was defined before the analysis. The association between the binary QIs and observed survival was assessed using Cox proportional hazard models adjusted for potential confounders. Results: Overall, 82.5% of patients received staging by MRI and/or CT of the head and neck region before the start of treatment. In 47.6% of stage III-IV patients eligible for treatment with curative intent, a whole-body FDG-PET(/CT) was performed. The proportion of patients whose cTNM and pTNM stage was reported to the BCR was 80.5 and 78.4%, respectively. The median interval from diagnosis to first treatment with curative intent was 32 days (IQR: 19-46). For none of these QIs the pre-set targets were reached and a substantial variability between centers was observed for all quality indicators. No binary QI was significantly associated with observed survival. Conclusions: The four quality indicators related to diagnosis and staging in HNSCC all showed substantial room for improvement. For none of them the pre-set targets were met at the national level and the variability between centers was substantial. Each Belgian hospital received an individual feedback report in order to stimulate reflection and quality improvement processes.

Association between surgical volume and post-operative mortality and survival after surgical resection in lung cancer in Belgium: A population-based study.

OBJECTIVES: The existence of a relationship between hospital surgical volume and outcome after lung cancer surgery remains an ongoing debate. We aimed to evaluate the association between volume and 60-day mortality, 1- and 3-year observed survival (OS) in non-small cell lung cancer (NSCLC) patients in Belgium. METHODS: Patients diagnosed with NSCLC in 2010-2011 were identified in the database of the Belgian Cancer Registry, excluding patients with multiple tumours. Regression models were applied to assess the relationship between hospital surgical volume, 60-day mortality and 1- and 3-year OS, adjusting for different patient and tumour characteristics. Surgical volume was taken into account as a continuous variable in the models. RESULTS: In 2010-2011 a total of 9,817 patients with NSCLC were diagnosed in Belgium and 2,084 of them underwent surgery. After adjusting for patient and tumour characteristics, a relationship between hospital surgical volume and patients' outcome was found. Postoperative mortality and survival improved with increasing annual surgical volume up to 10 interventions. However, no further gain in outcome has been observed above 10. While the 60-day postoperative mortality is 3.5% for hospitals with an annual volume larger than 10, the predicted mortality rate for a hospital with an annual volume of only 5 interventions is 6.5%. Similar results were observed for 1- and 3-year OS. CONCLUSION: In Belgium, a higher hospital surgical volume is associated with improved outcome in NSCLC patients after surgical resection. Minimally 10 surgical interventions per year seem to be required to achieve an optimal performance.

Use of health insurance data to identify and quantify the prevalence of main comorbidities in lung cancer patients.

BACKGROUND: Identifying comorbidities in lung cancer patients is a complex process in population-based studies and no gold standard exists. The current study aims to identify and measure the main comorbidities using administrative health insurance data, which were available on a population-based level. METHOD: A literature search was conducted to identify comorbidities in lung cancer patients and to select Anatomical Therapeutic Chemical codes to measure them. For each patient, the volume of delivered relevant drugs for each comorbidity in the year preceding the diagnosis of lung cancer was computed, based on the Defined Daily Doses reimbursed. Case definition rules were set by comparing the identification of comorbidities via health insurance data with the reporting of them in the medical files in a sample of hospitals. RESULTS: Four comorbidities were identified: chronic respiratory diseases, chronic cardiovascular diseases, diabetes mellitus and renal diseases. A very good to moderate agreement between the prevalence based on medical files versus health insurance data was obtained for diabetes mellitus (kappa = 0.83), chronic cardiovascular diseases (kappa = 0.64), chronic respiratory diseases (kappa = 0.48) but not for renal diseases (kappa = 0.22). Because only 27% of patients having renal diseases recorded in the medical files were identified using health insurance data, this comorbidity was not withheld. Among 12,839 lung cancer patients diagnosed in 2010-2011 in Belgium, 29.7% had chronic respiratory diseases, 57.5% had chronic cardiovascular diseases and 14.1% had diabetes mellitus. DISCUSSION: This study showed that it was possible to capture three major comorbidities in lung cancer patients using administrative health data, namely, diabetes mellitus, chronic cardiovascular diseases, and chronic respiratory diseases. However, the agreement was only moderate for the last one. A prerequisite for using this methodology is that administrative health data are available for all patients.

Quality of care and variability in lung cancer management across Belgian hospitals: a population-based study using routinely available data.

OBJECTIVE: To evaluate the quality of care for all patients diagnosed with lung cancer in Belgium based on a set of evidence-based quality indicators and to study the variability of care between hospitals. DESIGN, SETTING, PARTICIPANTS: A retrospective study based on linked data from the cancer registry, insurance claims and vital status for all patients diagnosed with lung cancer between 2010 and 2011. Evidence-based quality indicators were identified from a systematic literature search. A specific algorithm to attribute patients to a centre was developed, and funnel plots were used to assess variability of care between centres. INTERVENTION: None. MAIN OUTCOME MEASURE: The proportion of patients who received appropriate care as defined by the indicator. Secondary outcome included the variability of care between centres. RESULTS: Twenty indicators were measured for a total of 12 839 patients. Good results were achieved for 60-day post-surgical mortality (3.9%), histopathological confirmation of diagnosis (93%) and for the use of PET-CT before treatment with curative intent (94%). Areas to be improved include the reporting of staging information to the Belgian Cancer Registry (80%), the use of brain imaging for clinical stage III patients eligible for curative treatment (79%), and the time between diagnosis and start of first active treatment (median 20 days). High variability between centres was observed for several indicators. Twenty-three indicators were found relevant but could not be measured. CONCLUSION: This study highlights the feasibility to develop a multidisciplinary set of quality indicators using population-based data. The main advantage of this approach is that not additional registration is required, but the non-measurability of many relevant indicators is a hamper. It allows however to easily point to areas of large variability in care.

Applying Quality Indicators For Administrative Databases To Evaluate End-Of-Life Care For Cancer Patients In Belgium.

End-of-life cancer care has been criticized as frequently inappropriate and aggressive. Providing appropriate care to people with cancer is a public health priority. Quality indicators are considered a valid way to evaluate the appropriateness of end-of-life cancer care within a health care system. We conducted a population-level retrospective observational study of all cancer decedents in Belgium in 2012 to assess end-of-life care and risk factors for exposure to care. We linked eight full-population databases on health care use, cancer diagnoses, and demographic and socioeconomic variables. We used analysis of variance to examine factors associated with exposure to appropriate or inappropriate end-of-life cancer care. Of the 26,464 people in Belgium who died from cancer in 2012, 47 percent received specialist palliative care, and 30 percent died at home. In the last thirty days of life, 17 percent received chemotherapy, and 66 percent received diagnostic testing. For 17 percent, palliative care was initiated only in the last fourteen days of life. Our results suggest a need to focus policy on reducing aggressive and inappropriate care at the end of life and an opportunity to increase the proportion of people who receive specialist palliative care and die at home.

Using linked administrative and disease-specific databases to study end-of-life care on a population level.

BACKGROUND: The use of full-population databases is under-explored to study the use, quality and costs of end-of-life care. Using the case of Belgium, we explored: (1) which full-population databases provide valid information about end-of-life care, (2) what procedures are there to use these databases, and (3) what is needed to integrate separate databases. METHODS: Technical and privacy-related aspects of linking and accessing Belgian administrative databases and disease registries were assessed in cooperation with the database administrators and privacy commission bodies. For all relevant databases, we followed procedures in cooperation with database administrators to link the databases and to access the data. RESULTS: We identified several databases as fitting for end-of-life care research in Belgium: the InterMutualistic Agency's national registry of health care claims data, the Belgian Cancer Registry including data on incidence of cancer, and databases administrated by Statistics Belgium including data from the death certificate database, the socio-economic survey and fiscal data. To obtain access to the data, approval was required from all database administrators, supervisory bodies and two separate national privacy bodies. Two Trusted Third Parties linked the databases via a deterministic matching procedure using multiple encrypted social security numbers. CONCLUSION: In this article we describe how various routinely collected population-level databases and disease registries can be accessed and linked to study patterns in the use, quality and costs of end-of-life care in the full population and in specific diagnostic groups.

Advance care planning and dying in nursing homes in Flanders, Belgium: a nationwide survey.

CONTEXT: In Belgium, data on actual advance care planning (ACP) in nursing homes (NHs) are scarce. OBJECTIVES: To investigate the prevalence and characteristics of documented advance directives and physicians' orders for end-of-life care in NHs, and the authorization of a legal representative in relation to the residents' demographic and clinical characteristics and care received. METHODS: This was a retrospective cross-sectional study, including all NH residents deceased during September and October 2006 in all 594 NHs in Flanders, Belgium. Structured mail questionnaires about the resident's characteristics, hospital transfers, palliative care delivery, ACPs, and authorization of legal representatives were completed via the NH administrators and nurses involved in the care of the resident. RESULTS: Administrators of 318 NHs (53.5%) reported 1303 deaths. Nurses provided information about 1240 (95.2%) of these deaths. At the end of life, NH residents often had dementia (65.2%) and were severely dependent (76.1%). Almost half (43.1%) had at least one hospital transfer during the last three months of life and two-thirds received palliative care. Half had an ACP, predominantly a physician's order and less often an advance directive. Having advance directives or physician's orders was associated with receiving palliative care. Residents with a physician's order more often died in the NH. Nine percent had an authorized legal representative. CONCLUSION: Prevalence of ACPs and formal authorization of a legal representative was low among the deceased NH residents in Flanders, Belgium. There was a higher prevalence of physicians' orders, often established after the resident had lost capacity. Initiatives should be developed to stimulate more advance discussion on care options and making end-of-life decision with the residents while they retain capacity.