Achieving Thoracic Oncology data collection in Europe: a precursor study in 35 Countries

Abstract

BackgroundA minority of European countries have participated in international comparisons with high level data on lung cancer. However, the nature and extent of data collection across the continent is simply unknown, and without accurate data collection it is not possible to compare practice and set benchmarks to which lung cancer services can aspire.MethodsUsing an established network of lung cancer specialists in 37 European countries, a survey was distributed in December 2014. The results relate to current practice in each country at the time, early 2015. The results were compiled and then verified with co-authors over the following months.ResultsThirty-five completed surveys were received which describe a range of current practice for lung cancer data collection. Thirty countries have data collection at the national level, but this is not so in Albania, Bosnia-Herzegovina, Italy, Spain and Switzerland. Data collection varied from paper records with no survival analysis, to well-established electronic databases with links to census data and survival analyses.ConclusionUsing a network of committed clinicians, we have gathered validated comparative data reporting an observed difference in data collection mechanisms across Europe. We have identified the need to develop a well-designed dataset, whilst acknowledging what is feasible within each country, and aspiring to collect high quality data for clinical research.Electronic supplementary materialThe online version of this article (10.1186/s12885-018-5009-y) contains supplementary material, which is available to authorized users.

Epidemiology of lung cancer in Northern Greece: An 18- year hospital-based cohort study focused on the differences between smokers and non-smokers

“…Risk factors for lung cancer can be prevented, leading to the reduction of mortality rates, through tobacco control and other population-based preventive strategies 10 . However, global numbers do not show a consistent declining or rising trend in either incidence or mortality rates of lung cancer.…”

ERS statement on harmonised standards for lung cancer registration and lung cancer services in Europe

“…Datasets in use or in development were reviewed before and during meetings of the task force. These included the work from an allied project [11] as well as national datasets from countries represented on the task force. Supplement 1.1 reports the datasets reviewed and key facts regarding their development.…”

“…The tables include data items that should be mandatory in the minimum dataset (marked in black in supplement 2) as well those which are desirable (marked in blue in supplement 2). Data items in the minimum dataset were felt to be essential for the basic epidemiology required to evaluate key clinical outcome measures, and are already collected in a majority of European countries [11]. The minimum dataset for lung cancer (including tracheal cancer) is for all patients with an International Classification of Disease version 10 code of c33 or c34.…”

“…The main data item in this section is the PS of the individual at the time of diagnosis with lung cancer. The Eastern Cooperative Oncology Group (ECOG) system [46] (also known as the World Health Organization PS) is the most widely used method for recording this feature, although there is evidence that PS is only routinely collected in less than a third of European countries [11]. It is paramount that collecting this patient feature becomes routine in all registries or audit programmes given the important role PS plays in predicting outcome [39,[47][48][49][50].…”

“…It has subsequently been used in numerous studies, but it has limited functionality given the complexity of the score, the lack of clarity regarding severity of comorbid disease and the out-of-date weighting given to HIV/AIDS. The Adult Comorbidity Evaluation-27 (ACE-27) score is an alternative model used by some to quantify comorbid disease [56], and some countries record specific comorbid diseases, but the list is variable [11]. Therefore, the ICHOM list of comorbid diseases (based on SANGHA et al [57]) is recommended, but should be derived from the medical notes after consultation between the clinician and the patient.…”