Evaluating quality in acute care using patient reported outcome measures: a scoping review.

The aim of this scoping review is to identify patient reported outcome measures (PROMs) in acute care settings, assess their psychometric properties and provide recommendations for their use in daily practice. We performed a search in the PubMed database to identify publications concerning PROMs in an acute care setting. The COSMIN checklist was used to assess the psychometric properties of the reported PROMs. We found 1407 publications and included 14 articles, describing 15 measures. Most publications provided limited information on psychometric properties. Three generic PROMs were deemed of adequate quality for use in acute care. We recommend future development and evaluation of PROMs focussing on acute care to further evaluate and improve the quality of acute care.

Higher In-Hospital Mortality in Patients with Nonspecific Complaints Presenting to the Emergency Department.

BACKGROUND: Nonspecific complaints (NSC) at the Emergency Department (ED) are not well researched yet. OBJECTIVE: To investigate the number of patients who could be classified as having NSC early after arrival in the ED using an algorithm. METHOD: Retrospective cohort study was conducted among all hemodynamically stable non-trauma adult patients with MTS category orange/yellow visiting the ED. Patients who had no specific complaints/signs, predefined on a list, were categorized as NSC. RESULTS: In total, 2419 patients, of whom 102 (4.2%) presented with NSC. Hospitalization was more prevalent (85.3% vs. 69.0%, p<0.001) and in-hospital mortality was higher in the NSC-group (11.8% vs. 3.5%, adjusted OR 2.0, 95% CI 1.0-3.9, p=0.04). CONCLUSION: Using an algorithm it is possible to identify NSC patients who have (worse) outcomes than those classified as SC.

Are metformin, statin and aspirin use still associated with overall mortality among colorectal cancer patients with diabetes if adjusted for one another?

BACKGROUND: Metformin, statin and aspirin use seem associated with decreased mortality in cancer patients, though, without adjusting for one another. Independent associations of these drugs with overall mortality after colorectal cancer (CRC) diagnosis within glucose-lowering drugs (GLDs) users were assessed. METHODS: Patients starting GLDs before CRC diagnosis (1998-2011) were selected from the Eindhoven Cancer Registry linked with the PHARMO Database Network. The Cox regression model, with time since CRC diagnosis, included time-dependent variables of cumulative exposure to metformin, statins and aspirin after cancer diagnosis and time-dependent ever-never terms for drug exposure. RESULTS: A total of 1043 patients used GLDs before CRC diagnosis; 666 (64%) used metformin, 639 (61%) used statins and 490 (47%) used aspirin after CRC diagnosis. Multivariable analyses revealed that longer cumulative exposure to metformin was not associated with overall mortality (HRCumulative exposure/6 months 1.02; 95% CI 0.97-1.07), whereas the favourable effect of statins increased with cumulative exposure (HRCumulative exposure/6 months 0.93; 95% CI 0.89-0.98). No association between aspirin use and overall mortality was seen (HRCumulative exposure/6 months 0.98; 95% CI 0.93-1.03). CONCLUSIONS: No independent association between cumulative exposure to metformin, aspirin and overall mortality was found. Cumulative exposure to statins after CRC diagnosis was associated with lower overall mortality, supporting a drug effect of statins among GLDs users.

Unmet information needs and impact of cancer in (long-term) thyroid cancer survivors: results of the PROFILES registry.

OBJECTIVE: The objective of this study was to provide insight into the following: (a) the perceived level of, satisfaction with, and helpfulness of received information and unmet information needs among thyroid cancer (TC) survivors and (b) the relation between unmet information needs and impact of cancer (IOC). METHODS: All patients diagnosed with TC between 1990 and 2008, as registered in the Eindhoven Cancer Registry, received a survey on information provision (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Information module) and IOC. RESULTS: Thyroid cancer survivors (n = 306; response rate = 86%) indicated to receive no or only a little information about different aspects of their disease (27-86%), medical tests (20-27%), treatment (21-90%), and aftercare (86-91%). Almost half of the survivors (47%) were not at all or a little satisfied with the amount of information received; 31% found the received information not or a little helpful; a third of the patients (34%) indicated that they wanted to receive more information (defined as unmet needs). TC survivors with unmet informational needs scored significantly higher on both the positive (mean 3.2 vs. 2.9) and negative IOC scale (mean 2.5 vs. 2.2) compared with survivors without unmet needs (p < 0.01). In multivariate linear regression analyses, unmet information needs were positively associated with all positive IOC scales except positive self-evaluation (betas ranging from 0.16 to 0.24; p < 0.05), and all negative IOC scales except for appearance concerns (betas ranging from 0.12 to 0.19; p < 0.05). CONCLUSION: Thyroid cancer survivors experienced several areas of information provision as insufficient, suggesting room for improvement. Unmet information needs among TC survivors are associated with both positive and negative impacts of cancer.

Diminishing differences in treatment between patients with colorectal cancer with and without diabetes: a population-based study.

AIMS: An increasing number of oncologists will be confronted with individuals having diabetes and cancer. We assessed changes in patient-, tumour- and treatment-related variables in patients with colorectal cancer with and without diabetes. METHODS: All 17 170 cases of primary colorectal cancer between 1995 and 2010 in the South-Eastern Netherlands were included. The Cochrane-Armitage test and logistic regression analysis were used to analyse trends. RESULTS: In total, 11 893 patients were diagnosed with colon cancer and 5277 with rectal cancer, of whom 1711 (14%) and 609 (12%), respectively, had diabetes at the time of cancer diagnosis. Patients with colorectal cancer with diabetes compared with those without were approximately 5 years older and more often diagnosed with proximal colon tumours (60 vs. 54%; P < 0.0001). Chemotherapy administration significantly increased in patients with stage III colon cancer with and without diabetes (from 17% in 1995-1998 to 50% in 2007-2010, 38% to 63%, respectively; P < 0.0001). However, in the most recent period, and after adjusting for the co-variables age, gender, year of diagnosis and specific co-morbidities, patients with stage III colon cancer with diabetes received adjuvant chemotherapy less frequently than those without [odds ratio 0.7 (95% CI 0.5-0.9); P = 0.002]. The proportion of patients with stage II/III rectal cancer with and without diabetes who underwent radiotherapy has been similar in recent years (91 vs. 87%). CONCLUSIONS: Although the administration of chemotherapy and radiotherapy increased between 1995 and 2010 in patients with colorectal cancer with and without diabetes, patients with colorectal cancer with diabetes continue to receive chemotherapy less frequently than those without diabetes.

Implementation of a care-pathway at the emergency department for older people presenting with nonspecific complaints; a protocol for a multicenter parallel cohort study.

BACKGROUND: Older adults frequently attend the Emergency Department (ED) with poorly defined symptoms, often called nonspecific complaints (NSC). NSC such as 'weakness' and 'not feeling well', often lead to an extensive differential diagnosis. Patients with NSC experience a prolonged length of stay at the ED and are prone to adverse outcomes. Currently, a care pathway for patients with NSC does not exist. A special structured care pathway for patients with NSC was designed to improve the efficiency and quality of care at the ED. METHOD: A multicenter parallel cohort study, organized in different hospitals in the Noord-Brabant area, the Netherlands, in which general practitioners (GP), elderly care physicians (ECP), Emergency Physicians (EP), geriatricians and internists will collaborate. Patients ≥ 70 years presenting with NSC and in need of ED admission as indicated by their own GP or ECP are eligible for inclusion. Before implementation each hospital will retrospectively include their own control-group. After implementation, patients will prospectively be included. The care-pathway exists of risk stratification by the APOP-screener, in-depth history taking, i.e. limited comprehensive geriatric assessment (CGA) and a standard set of diagnostics, and a dedicated ED-nurse (if possible) present to ensure the care-pathway is followed. The primary outcome is length of stay at the ED (LOS-ED) and perceived quality of care. Secondary outcomes are hospital length of stay, revisits, readmissions and mortality at 30- and 90-day follow-up. DISCUSSION: This study proposes a structured care pathway for older patients presenting at the ED with NSCs and considering effectiveness and perceived quality this may improve acute care for these patients. TRIAL REGISTRATION: Dutch Trial register, number NL8960.

Disease-specific mortality among stage I-III colorectal cancer patients with diabetes: a large population-based analysis.

AIMS/HYPOTHESIS: The aim of our study was to investigate overall and disease-specific mortality of colorectal cancer patients with diabetes. METHODS: In this population-based study, we included all colorectal cancer patients, newly diagnosed with stage I-III cancer, between 1997 and 2007 in the registration area of the Eindhoven Cancer Registry. Stage of cancer, cancer treatment and comorbidities were actively collected by reviewing hospital medical records. Data on patients with and without diabetes were linked to Statistics Netherlands to assess vitality, date of death and underlying cause of death. Follow-up of all patients was completed until 1 January 2009. RESULTS: We included 6,974 patients with colon cancer and 3,888 patients with rectal cancer, of whom 820 (12%) and 404 (10%), respectively, had diabetes at the time of cancer diagnosis. During follow-up, death occurred in 611 (50%) of 1,224 cancer patients with diabetes and 3,817 (40%) of 9,638 cancer patients without diabetes. Multivariate Cox regression analyses, adjusted for age, sex, socioeconomic status, stage, lymph nodes examined, adjuvant therapy and year of diagnosis, showed that overall mortality was significantly higher for colon (HR 1.12, 95% CI 1.01, 1.25) and rectal (HR 1.21, 95% CI 1.03, 1.41) cancer patients with diabetes than for those without. Disease-specific mortality was only significantly increased for rectal cancer patients (HR 1.30, 95% CI 1.06, 1.60). CONCLUSIONS/INTERPRETATION: Diabetes at the time of rectal cancer diagnosis was independently associated with an increased risk of colorectal cancer mortality compared with no diabetes, suggesting a specific interaction between diabetes and rectal cancer. Future in-depth studies including detailed diabetes- and cancer-related variables should elucidate pathways.

Risk of cancer in patients on insulin glargine and other insulin analogues in comparison with those on human insulin: results from a large population-based follow-up study.

AIMS/HYPOTHESIS: Several publications suggest an association between certain types of insulin and cancer, but with conflicting results. We investigated whether insulin glargine (A21Gly,B31Arg,B32Arg human insulin) is associated with an increased risk of cancer in a large population-based cohort study. METHODS: Data for this study were obtained from dispensing records from community pharmacies individually linked to hospital discharge records from 2.5 million individuals in the Netherlands. In a cohort of incident users of insulin, the association between insulin glargine and other insulin analogues, respectively, and cancer was analysed in comparison with human insulin using Cox proportional hazard models with cumulative duration of drug use as a time-varying determinant. The first hospital admission with a primary diagnosis of cancer was considered as the main outcome; secondary analyses were performed with specific cancers as outcomes. RESULTS: Of the 19,337 incident insulin users enrolled, 878 developed cancer. Use of insulin glargine was associated with a lower risk of malignancies in general in comparison with human insulin (HR 0.75, 95% CI 0.71, 0.80). In contrast, an increased risk was found for breast cancer (HR 1.58, 95% CI 1.22, 2.05). Dose-response relationships could not be identified. CONCLUSION/INTERPRETATION: Users of insulin glargine and users of other insulin analogues had a lower risk of cancer in general than those using human insulin. Both associations might be a consequence of residual confounding, lack of adherence or competing risk. However, as in previous studies, we demonstrated an increased risk of breast cancer in users of insulin glargine in comparison with users of human insulin.

Breakfast partly restores the anti-inflammatory function of high-density lipoproteins from patients with type 2 diabetes mellitus.

Background and aims: High-density lipoproteins (HDL) of patients with type 2 diabetes mellitus (T2DM) have impaired anti-inflammatory activities. The anti-inflammatory activity of HDL has been determined ex vivo after isolation by different methods from blood mostly obtained after overnight fasting. We first determined the effect of the HDL isolation method, and subsequently the effect of food intake on the anti-inflammatory function of HDL from T2DM patients. Methods: Blood was collected from healthy controls and T2DM patients after an overnight fast, and from T2DM patients 3 h after breakfast (n = 17 each). HDL was isolated by a two-step density gradient ultracentrifugation in iodixanol (HDLDGUC2), by sequential salt density flotation (HDLSEQ) or by PEG precipitation (HDLPEG). The anti-inflammatory function of HDL was determined by the reduction of the TNFα-induced expression of VCAM-1 in human coronary artery endothelial cells (HCAEC) and retinal endothelial cells (REC). Results: HDL isolated by the three different methods from healthy controls inhibited TNFα-induced VCAM-1 expression in HCAEC. With apoA-I at 0.7 µM, HDLDGUC2 and HDLSEQ were similarly effective (16% versus 14% reduction; n = 3; p > 0.05) but less effective than HDLPEG (28%, p < 0.05). Since ultracentrifugation removes most of the unbound plasma proteins, we used HDLDGUC2 for further experiments. With apoA-I at 3.2 µM, HDL from fasting healthy controls and T2DM patients reduced TNFα-induced VCAM-1 expression in HCAEC by 58 ± 13% and 51 ± 20%, respectively (p = 0.35), and in REC by 42 ± 13% and 25 ± 18%, respectively (p < 0.05). Compared to preprandial HDL, postprandial HDL from T2DM patients reduced VCAM-1 expression by 56 ± 16% (paired test: p < 0.001) in HCAEC and by 34 ± 13% (paired test: p < 0.05) in REC. Conclusions: The ex vivo anti-inflammatory activity of HDL is affected by the HDL isolation method. Two-step ultracentrifugation in an iodixanol gradient is a suitable method for HDL isolation when testing HDL anti-inflammatory function. The anti-inflammatory activity of HDL from overnight fasted T2DM patients is significantly impaired in REC but not in HCAEC. The anti-inflammatory function of HDL is partly restored by food intake.

Response to radiation therapy in adrenocortical carcinoma.

INTRODUCTION: Adrenocortical carcinoma (ACC) is a rare disease which is considered resistant to many treatments. The role of radiotherapy in ACC remains unclear. In general radiotherapy is thought to be ineffective for the treatment of ACC, and therefore not often used. However, recent reports suggest the opposite. The aim of this study was to perform a retrospective analysis to evaluate the application of radiotherapy in Dutch ACC patients, and to determine the occurrence of response. MATERIALS AND METHODS: The Dutch ACC Registry (no.=159) was screened for patients who had received radiotherapy between 1990 and 2008. Tumor response evaluation was performed according to the Response Evaluation Criteria In Solid Tumors (RECIST). RESULTS: Only 13 patients (8% of registered patients) had received radiation therapy of whom 6 were irradiated for the palliation of painful bone metastases. In all patients this radiation resulted in pain relief. Three patients received adjuvant tumor bed radiation after resection. Four patients were radiated on irresectable tumor recurrence or tumor metastases. Two patients died soon after radiation therapy and therefore follow-up information regarding tumor response after radiation therapy of 2 patients was available. Interestingly, partial tumor response according to RECIST criteria, was observed in both patients. CONCLUSION: ACC can be sensitive to radiotherapy and should be considered in the treatment of advanced ACC, particularly in worrisome lesions. The role of radiotherapy in advanced ACC is to complement a systemic treatment such as mitotane or classic cytotoxic agents.

The IGF2 methylation score for adrenocortical cancer: an ENSAT validation study.

Adrenocortical carcinoma (ACC) is diagnosed using the histopathological Weiss score (WS), but remains clinically elusive unless it has metastasized or grows locally invasive. Previously, we proposed the objective IGF2 methylation score as diagnostic tool for ACC. This multicenter European cohort study validates these findings. Patient and tumor characteristics were obtained from adrenocortical tumor patients. DNA was isolated from frozen specimens, where after DMR2, CTCF3, and H19 were pyrosequenced. The predictive value of the methylation score for malignancy, defined by the WS or metastasis development, was assessed using receiver operating characteristic curves and logistic and Cox regression analyses. Seventy-six ACC patients and 118 patients with adrenocortical adenomas were included from seven centers. The methylation score and tumor size were independently associated with the pathological ACC diagnosis (OR 3.756 95% CI 2.224-6.343; OR 1.467 95% CI 1.202-1.792, respectively; Hosmer-Lemeshow test P = 0.903), with an area under the curve (AUC) of 0.957 (95% CI 0.930-0.984). The methylation score alone resulted in an AUC of 0.910 (95% CI 0.866-0.952). Cox regression analysis revealed that the methylation score, WS and tumor size predicted development of metastases in univariate analysis. In multivariate analysis, only the WS predicted development of metastasis (OR 1.682 95% CI 1.285-2.202; P < 0.001). In conclusion, we validated the high diagnostic accuracy of the IGF2 methylation score for diagnosing ACC in a multicenter European cohort study. Considering the known limitations of the WS, the objective IGF2 methylation score could potentially provide extra guidance on decisions on postoperative strategies in adrenocortical tumor patients.

What is known about the quality of out-of-hospital emergency medical services in the Arabian Gulf States? A systematic review.

BACKGROUND: The Emergency Medical Services (EMS) have been developed in the Arabian Gulf States (AGS) in the last three decades. The EMS needs continuous quality assessment of their performance to improve and provide the best out-of-hospital care. This study aims to assess the quality of EMS in the AGS according to the six quality domains of the Institute of Medicine. METHODS: We searched four databases (i.e., PubMed, EMBASE, Web of Science, and CINAHL) for studies that reported on the quality of EMS in any of the AGS using clinical or non-clinical performance indicators. To quantify study quality and risk of bias, the adapted Newcastle Ottawa Scale was used. We focused on structural and functional indicators, clinical and non-clinical. RESULTS: Twenty-five studies were eligible for inclusion. One study contained result of safety, fifteen time-centeredness, twenty effectiveness, five patient-centeredness, and thirteen studies reported on equity of EMS. None of the studies reported on efficiency of EMS. A significant proportion of studies showed high scores on the Newcastle-Ottawa scale. Limited studies on EMS quality were available, not covering all relevant quality domains and not covering the whole AGS region. The equity domain showed the best outcome performance finding, whereas finding of the patient-centeredness domain showed room for improvement in the foreseeable future. CONCLUSION: This review highlights the need for more and better studies of sufficient quality about all domains of quality in EMS in all the AGS. EMS research in Kuwait and Bahrain is warranted, as currently studies of EMS quality are unavailable for these States. Moreover, efficiency researches exploring this discipline should be conducted specially no studies were found has been searching this domain. TRIAL REGISTRATION: PROSPERO registration number: CRD42019123896.

Changes in glucose-lowering drug use before and after cancer diagnosis in patients with diabetes.

AIM: This study explores the changes in glucose-lowering drug (GLD) use before and after cancer diagnosis among patients with diabetes. METHODS: New GLD users (1998-2011) living in the Dutch ECR-PHARMO catchment area were selected from the PHARMO Database Network (n=52,228). Those with a primary cancer diagnosis were considered cases (n=3281) and matched with eligible controls (n=12,891) without cancer during follow-up. Conditional logistic regression analysis was used to assess changes in GLD use, such as treatment add-ons, treatments drops and initiation of insulin, for cases compared with controls associated with specific cancer types in four time windows (6-3 and 0-3months before cancer diagnosis; 0-3 and 3-6months after cancer diagnosis). RESULTS: In the 3months before cancer diagnosis, patients with upper gastrointestinal (GI) cancers (oesophageal, stomach, pancreatic, liver cancers) had higher odds of initiating insulin (OR: 9.3; 95% CI: 3.6-24.1); to a lesser extent, this was also observed in the 3months prior to that (at 6months, OR: 3.9; 95% CI: 1.3-12.1). Diagnosis of colorectal (OR: 3.4; 95% CI: 1.4-8.4), pulmonary (OR: 2.5; 95% CI: 1.1-5.4) and upper GI (OR: 13.6; 95% CI: 5.0-36.9) cancers was associated with increased odds of initiating insulin in the 3months after cancer diagnosis. During all study time windows, the odds of treatment drops were higher for patients with upper GI cancers whereas, for most other cancers, these odds were higher only after a diagnosis of cancer. CONCLUSION: The greater odds of initiating insulin during the 6months prior to diagnosis of upper GI cancers suggest reverse causation. After cancer diagnosis, drops in use of GLDs was commonly seen.

Adrenocortical carcinoma.

Adrenocortical carcinoma is a rare disease with a poor prognosis. Patients can present with a hormonal syndrome or with general symptoms from an abdominal mass. The pathogenesis is unknown. Sometimes the adrenocortical carcinoma is associated with tumour syndromes such as the Beckwith-Wiedemann and Li-Fraumeni syndrome; however, most tumours are sporadic. Using one of the international classification methods, histopathological research can in almost all cases distinguish between adrenocortical adenoma and carcinoma. complete surgical resection is the treatment of choice for adrenocortical carcinoma. Mitotane is given when surgery is not possible, after incomplete resection or for metastatic disease. Frequently used chemotherapeutic combinations are etoposide, doxorubicin, cisplatin and mitotane (EDP/M) and streptozotocin and mitotane (SZ/M). International and national cooperation has resulted in a randomised trial aimed at determining a standard therapy in advanced adrenocortical carcinoma. The Dutch Adrenal Network is a national cooperation of endocrinologists, pathologists and oncologists from all eight academic centres and Máxima Medical centre. The network combines knowledge and expertise and gives patients the opportunity to receive optimal treatment in their own district.

Impact of detection bias on the risk of gastrointestinal cancer and its subsites in type 2 diabetes mellitus.

BACKGROUND: Type 2 diabetes mellitus (T2DM) may be a risk factor for gastrointestinal (GI) cancers, but variations in study designs of observational studies may have yielded biased results due to detection bias. Furthermore, differences in risk for GI cancer subsites have not been extensively evaluated. We aimed to determine the risk of GI cancer and its subsites in patients with T2DM and how it is affected by detection bias. METHODS: A matched cohort study was performed using the NCR-PHARMO database. New-users of ≥1 non-insulin anti-diabetic drug during 1998-2011 were matched with non-diabetic controls by year of birth, sex, and time between database entry and index. Cox regression analyses were performed with and without lag-period to estimate hazard ratios (HRs) for GI cancer and its subsites. Covariables included age, sex, use of other drugs and history of hospitalisation. RESULTS: An increased risk of GI cancer was observed in T2DM patients (HR 1.5, 95% confidence interval [CI] 1.3-1.7) compared with controls, which was attenuated in the 1-year lagged analysis (HR 1.4, 95% CI 1.2-1.7). Stratified by subsite, statistically significant increased risks of pancreatic (HR 4.7, 95% CI 3.1-7.2), extrahepatic bile duct (HR 4.2, 95% CI 1.5-11.8) and distal colon cancer (HR 1.5, 95% CI 1.1-2.1) were found, which remained statistically significantly increased in the lagged analysis. CONCLUSIONS: T2DM patients had a 40% increased risk of GI cancer. Increased GI cancer risks tended to be weaker when reducing detection bias by applying a 1-year lag-period. Future observational studies should therefore include sensitivity analyses in which this bias is minimised.

[Gastroenteropancreatic neuroendocrine tumours (carcinoid tumours): definition, clinical aspects, diagnosis and therapy]. / Gastro-enteropancreatische neuro-endocriene tumoren (carcinoïde tumoren): definitie, kliniek, diagnostiek en therapie.

Carcinoid tumours are rare neuroendocrine tumours. In 2000 the WHO developed a new classification which gives a better description of the characteristics and biological behaviour of the tumour. Their advised designation is gastroenteropancreatic neuroendocrine tumour (GEP-NET). Somatostatin receptor scintigraphy has the highest sensitivity for visualisation of GEP-NETs. In the recent past years new positron emission tomography (PET) tracers have been developed and PET scanning is likely to become an important tool in the near future. Surgical resection is the treatment of first choice for a patient with a GEP-NET. In metastatic disease a number of forms ofpalliative treatment are possible. Cytotoxic chemotherapy seems only to be effective in aggressive, poorly-differentiated tumours. Therapy with somatostatin analogues leads to objective tumour regression in a minority of patients only. New advances in peptide receptor radionuclide therapy using radioactive-labelled somatostatin analoga are showing better results.

Synchronous vs. Metachronous Metastases in Adrenocortical Carcinoma: an Analysis of the Dutch Adrenal Network.

Adrenal Cortical Carcinoma (ACC) is a rare malignancy with an incidence of 1.0 per million per year in the Netherlands. Median survival varies according to the European Network for the Study of Adrenal Tumours (ENS@T) tumour stage. It is unknown whether time until development of metastases is of influence on prognosis. To asses this, data were retrospectively obtained from centres of the Dutch Adrenal Network. Patients who presented with ACC between January 1, 2004 and October 31, 2013 were included. Date of detection of metastases, number of metastases and affected organs were registered. One hundred sixty patients were included in the analysis. Synchronous metastases were defined as diagnosis of metastasis ≤6 months after the initial diagnosis of ACC. Overall survival rate was calculated from the date of diagnosis of metastasis until death from any cause. At first presentation, 50 patients (31 %) had ACC with metastases (ENS@T stage IV). Another 67 (42 %) developed metastases during follow-up. Amongst the 117 patients with metastases, 84 (72 %) patients had synchronous metastases and 33 (28 %) developed metachronous metastases. Diagnosis of synchronous metastases (p = 0.046), more than one affected organ (p < 0.001) and four or more metastases (p < 0.001) were found to be associated with reduced overall survival. Limitations included retrospective design and limited details regarding pathological data. We conclude that synchronous metastases of ACC are associated with a poorer prognosis compared to metachronous metastases of ACC. The clinical characteristics associated with prognosis in this study support the view to refine the prognostic classification for patients with stage IV ACC.