Abstract:Incidence of and survival from breast cancer showed large differences between countries. Substantial improvements in the use of internationally recognised common terminology, standardised data coding and data completeness for prognostic indicators are required before international comparisons of routine data can be used to inform health policy.
“…However, using predefined algorithms to measure metastases and secondary tumours in administrative data alone has proven challenging elsewhere and should therefore be tested [38]. The reliability and completeness of coding for symptoms and treatment effects in administrative data can be sub-optimal, given marked variability in number and detail of diagnostic and procedure codes in administrative data, as has been found in multi-country projects [39][40][41]. Specific codes may be identified for some outcomes, but whether they are routinely recorded in hospital discharge summaries needs evaluation.…”
Section: Synthesis Of Resultsmentioning
confidence: 99%
“…Specific codes may be identified for some outcomes, but whether they are routinely recorded in hospital discharge summaries needs evaluation. The ability to follow large cohorts of patients over time using administrative databases, nonetheless, can provide useful information regarding patient comorbidities and resource use, mortality outcomes, and permit large-scale comparisons of geographic areas, including cross-country [35,[39][40][41]. On the other end, PROMs, some clinical data (i.e., test results for treatment response, surgical margins) and functioning outcomes are lacking when considering administrative data alone.…”
Section: Synthesis Of Resultsmentioning
confidence: 99%
“…Linking administrative data to patient registry data allows for considerable improvement in determining incidence and matching treatments found in the administrative data with patient groups according to tumour type and risk level, though not all cancer registries contain reliable codes or geographic coverage, as was found in a EuroHOPE study for breast cancer [41]. In that study, countrywide cancer registry data was impossible to obtain for linkage in Italy, and staging information was largely incomplete.…”
Background: A Core Outcomes Set (COS) is an agreed minimum set of outcomes that should be reported in all clinical studies related to a specific condition. Using prostate cancer as a case study, we identified, summarized, and critically appraised published COS development studies and assessed the degree of overlap between them and selected real-world data (RWD) sources. Methods: We conducted a scoping review of the Core Outcome Measures in Effectiveness Trials (COMET) Initiative database to identify all COS studies developed for prostate cancer. Several characteristics (i.e., study type, methods for consensus, type of participants, outcomes included in COS and corresponding measurement instruments, timing, and sources) were extracted from the studies; outcomes were classified according to a predefined 38-item taxonomy. The study methodology was assessed based on the recent COS-STAndards for Development (COS-STAD) recommendations. A 'mapping' exercise was conducted between the COS identified and RWD routinely collected in selected European countries. Results: Eleven COS development studies published between 1995 and 2017 were retrieved, of which 8 were classified as 'COS for clinical trials and clinical research', 2 as 'COS for practice' and 1 as 'COS patient reported outcomes'. Recommended outcomes were mainly categorized into 'mortality and survival' (17%), 'outcomes related to neoplasm' (18%), and 'renal and urinary outcomes' (13%) with no relevant differences among COS study types. The studies generally fulfilled the criteria for the COS-STAD 'scope specification' domain but not the 'stakeholders involved' and 'consensus process' domains. About 72% overlap existed between COS and linked administrative data sources, with important gaps. Linking with patient registries improved coverage (85%), but was sometimes limited to smaller follow-up patient groups. Conclusions: This scoping review identified few COS development studies in prostate cancer, some quite dated and with a growing level of methodological quality over time. This study revealed promising overlap between COS and RWD sources, though with important limitations; linking established, national patient registries to administrative data provide the best means to additionally capture patient-reported and some clinical outcomes over time. Thus, increasing the combination of different data sources and the interoperability of systems to follow larger patient groups in RWD is required.
“…However, using predefined algorithms to measure metastases and secondary tumours in administrative data alone has proven challenging elsewhere and should therefore be tested [38]. The reliability and completeness of coding for symptoms and treatment effects in administrative data can be sub-optimal, given marked variability in number and detail of diagnostic and procedure codes in administrative data, as has been found in multi-country projects [39][40][41]. Specific codes may be identified for some outcomes, but whether they are routinely recorded in hospital discharge summaries needs evaluation.…”
Section: Synthesis Of Resultsmentioning
confidence: 99%
“…Specific codes may be identified for some outcomes, but whether they are routinely recorded in hospital discharge summaries needs evaluation. The ability to follow large cohorts of patients over time using administrative databases, nonetheless, can provide useful information regarding patient comorbidities and resource use, mortality outcomes, and permit large-scale comparisons of geographic areas, including cross-country [35,[39][40][41]. On the other end, PROMs, some clinical data (i.e., test results for treatment response, surgical margins) and functioning outcomes are lacking when considering administrative data alone.…”
Section: Synthesis Of Resultsmentioning
confidence: 99%
“…Linking administrative data to patient registry data allows for considerable improvement in determining incidence and matching treatments found in the administrative data with patient groups according to tumour type and risk level, though not all cancer registries contain reliable codes or geographic coverage, as was found in a EuroHOPE study for breast cancer [41]. In that study, countrywide cancer registry data was impossible to obtain for linkage in Italy, and staging information was largely incomplete.…”
Background: A Core Outcomes Set (COS) is an agreed minimum set of outcomes that should be reported in all clinical studies related to a specific condition. Using prostate cancer as a case study, we identified, summarized, and critically appraised published COS development studies and assessed the degree of overlap between them and selected real-world data (RWD) sources. Methods: We conducted a scoping review of the Core Outcome Measures in Effectiveness Trials (COMET) Initiative database to identify all COS studies developed for prostate cancer. Several characteristics (i.e., study type, methods for consensus, type of participants, outcomes included in COS and corresponding measurement instruments, timing, and sources) were extracted from the studies; outcomes were classified according to a predefined 38-item taxonomy. The study methodology was assessed based on the recent COS-STAndards for Development (COS-STAD) recommendations. A 'mapping' exercise was conducted between the COS identified and RWD routinely collected in selected European countries. Results: Eleven COS development studies published between 1995 and 2017 were retrieved, of which 8 were classified as 'COS for clinical trials and clinical research', 2 as 'COS for practice' and 1 as 'COS patient reported outcomes'. Recommended outcomes were mainly categorized into 'mortality and survival' (17%), 'outcomes related to neoplasm' (18%), and 'renal and urinary outcomes' (13%) with no relevant differences among COS study types. The studies generally fulfilled the criteria for the COS-STAD 'scope specification' domain but not the 'stakeholders involved' and 'consensus process' domains. About 72% overlap existed between COS and linked administrative data sources, with important gaps. Linking with patient registries improved coverage (85%), but was sometimes limited to smaller follow-up patient groups. Conclusions: This scoping review identified few COS development studies in prostate cancer, some quite dated and with a growing level of methodological quality over time. This study revealed promising overlap between COS and RWD sources, though with important limitations; linking established, national patient registries to administrative data provide the best means to additionally capture patient-reported and some clinical outcomes over time. Thus, increasing the combination of different data sources and the interoperability of systems to follow larger patient groups in RWD is required.
“…Of note, there were marked differences in the age of the subjects in these studies. In the study by Maruti et al, the mean age of the cohort at baseline when they were cancer free was 61 years, and the age of subjects when breast cancer was diagnosed, sometime during the follow-up period (up to 5 years), was older [ 14 ]. In the current study and in that of Stookey et al, patients with breast cancer were a mean age of 52.7 years and 56.5 years at presentation, respectively [ 45 ].…”
Section: Discussionmentioning
confidence: 99%
“…In addition to Japan, the prevalence of breast cancer is increasing among Asian and American women, with Korea accounting for the highest prevalence of breast cancer from 1988 to 2006 in Southeast Asia from 1988 to 2013 [ 13 ]. The one-year survival rate of breast cancer in European countries varies from 94.1% in Scotland to 97.1% in Italy [ 14 ]. In African women, survival rate is low due to the delay in seeking diagnosis and treatment for breast cancer [ 15 ].…”
Risk and protective factors for breast cancer (BC) include lifestyle, diet, reproduction, and others. Increased risk for colon cancer was linked with low water intake. The link between water consumption and BC was scarcely studied. We investigated the association between water and fluid consumption and the occurrence of BC in a retrospective case–control study in the Shaare Zedek Medical Center, Jerusalem, in 206 women aged 25–65 years (106 with newly diagnosed BC, and 100 controls). A food frequency questionnaire (FFQ), consumption of water, foods, and beverages, lifestyle, and other risk and protective factors were recorded. The age of women in both groups was comparable ((M ± SD) 52.7 ± 9.8 and 50.6 ± 11.4 years, respectively (p = 0.29)). Women with BC consumed 20.2% less water (M ± SD=5.28 ± 4.2 and 6.62 ± 4.5 cups/day, respectively, p = 0.02) and 14% less total fluids than controls (M ± SD=2095 ± 937 mL/day and 2431 ± 1087 mL/day, respectively, p = 0.018). Multiple stepwise logistic regression showed that the differences remained significant both for daily water consumption (p = 0.031, CI = 0.462–0.964) and for total daily liquid intake (p = 0.029, CI = 0.938–0.997). Low water and liquids intake as a risk factor for BC may be related to the younger age of our subjects. The effect of age on the potential role of water intake in decreasing BC risk should be investigated.
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