The impact of electronic versus paper-based data capture on data collection logistics and on missing scores in thyroid cancer patients.

The purpose of this study was to investigate the impact of the type of data capture on the time and help needed for collecting patient-reported outcomes as well as on the proportion of missing scores. In a multinational prospective study, thyroid cancer patients from 17 countries completed a validated questionnaire measuring quality of life. Electronic data capture was compared to the paper-based approach using multivariate logistic regression. A total of 437 patients were included, of whom 13% used electronic data capture. The relation between data capture and time needed was modified by the emotional functioning of the patients. Those with clinical impairments in that respect needed more time to complete the questionnaire when they used electronic data capture compared to paper and pencil (OR <sub>adj</sub> 24.0; p = 0.006). This was not the case when patients had sub-threshold emotional problems (OR <sub>adj</sub> 1.9; p = 0.48). The odds of having the researcher reading the questions out (instead of the patient doing this themselves) (OR <sub>adj</sub> 0.1; p = 0.01) and of needing any help (OR <sub>adj</sub> 0.1; p = 0.01) were lower when electronic data capture was used. The proportion of missing scores was equivalent in both groups (OR <sub>adj</sub> 0.4, p = 0.42). The advantages of electronic data capture, such as real-time assessment and fewer data entry errors, may come at the price of more time required for data collection when the patients have mental health problems. As this is not uncommon in thyroid cancer, researchers need to choose the type of data capture wisely for their particular research question

International Phase IV Field Study for the Reliability and Validity of the European Organisation for Research and Treatment of Cancer Thyroid Cancer Module EORTC QLQ-THY34.

Purpose: The aim of this study was to validate the new European Organisation for Research and Treatment of Cancer Quality of Life Thyroid Cancer Module (EORTC QLQ-THY34). Methods: We enrolled 437 thyroid cancer patients from 17 countries. One group (n = 303), undergoing treatment or best supportive care, completed the questionnaires at three time points (before therapy [t1], 6 weeks later [t2], and 6 months after t2 [t3]). A second group (survivors ≥2 years after diagnosis, n = 134) completed it at a random baseline time point and a second time 1 week later. We determined internal consistency (using Cronbach's alpha), the scale structure (with confirmatory factor analysis), and discriminant validity (using known-group comparisons). Group 1 data were used to assess responsiveness and group 2 data to determine test-retest reliability using intra-class correlations (ICC). Results: All 34 items fulfilled the criteria to be kept in the questionnaire. Cronbach's alpha was >0.70 in 8 of the 9 multi-item scales. All standardized factor loadings exceeded 0.40, confirming the proposed scale structure. The ICC was >0.70 in all scales expressing good test-retest reliability. Differences in scale scores between patients with different histology were >5 points in all scales. In all but one of the pre-specified scales (Dry Mouth), changes over time were ≥|4| points between at least two time points. Conclusion: The EORTC QLQ-THY34 with its 9 multi-item and 8 single-item scales is a reliable and valid tool to measure quality of life in thyroid cancer patients and can be used in future trials and studies

The SHARE European Earthquake Catalogue (SHEEC) 1000-1899

In the frame of the European Commission project "Seismic Hazard Harmonization in Europe" (SHARE), aiming at harmonizing seismic hazard at a European scale, the compilation of a homogeneous, European parametric earthquake catalogue was planned. The goal was to be achieved by considering the most updated historical dataset and assessing homogenous magnitudes, with support from several institutions. This paper describes the SHARE European Earthquake Catalogue (SHEEC), which covers the time window 1000-1899. It strongly relies on the experience of the European Commission project "Network of Research Infrastructures for European Seismology" (NERIES), a module of which was dedicated to create the European "Archive of Historical Earthquake Data" (AHEAD) and to establish methodologies to homogenously derive earthquake parameters from macroseismic data. AHEAD has supplied the final earthquake list, obtained after sorting duplications out and eliminating many fake events; in addition, it supplied the most updated historical dataset. Macroseismic data points (MDPs) provided by AHEAD have been processed with updated, repeatable procedures, regionally calibrated against a set of recent, instrumental earthquakes, to obtain earthquake parameters. From the same data, a set of epicentral intensity-to-magnitude relations has been derived, with the aim of providing another set of homogeneous Mw estimates. Then, a strategy focussed on maximizing the homogeneity of the final epicentral location and Mw, has been adopted. Special care has been devoted also to supply location and Mw uncertainty. The paper focuses on the procedure adopted for the compilation of SHEEC and briefly comments on the achieved results. © 2012 The Author(s)

Long-term prognosis of epilepsy, prognostic patterns and drug resistance : a population-based study

Background and purpose: Seizures in most people with epilepsy remit but prognostic markers are poorly understood. There is also little information on the long-term outcome of people who fail to achieve seizure control despite the use of two antiepileptic drugs (drug resistance). Methods: People with a validated diagnosis of epilepsy in whom two antiepileptic drugs had failed were identified from primary care records. All were registered with one of 123 family physicians in an area of northern Italy. Remission (uninterrupted seizure freedom lasting 2 years or longer) and prognostic patterns (early remission, late remission, remission followed by relapse, no remission) were determined. Results: In all, 747 individuals (381 men), aged 11 months to 94 years, were followed for 11 045.5 person-years. 428 (59%) were seizure-free. The probability of achieving 2-year remission was 18% at treatment start, 34% at 2 years, 45% at 5, 52% at 10 and 67% at 20 years (terminal remission, 60%). Epilepsy syndrome and drug resistance were the only independent predictors of 2- and 5-year remission. Early remission was seen in 101 people (19%), late remission in 175 (33%), remission followed by relapse in 85 (16%) and no remission in 166 (32%). Treatment response was the only variable associated with differing prognostic patterns. Conclusion: The long-term prognosis of epilepsy is favourable in most cases. Early seizure remission is not invariably followed by terminal remission and seizure outcome varies according to well-defined patterns. Prolonged seizure remission and prognostic patterns can be predicted by broad syndromic categories and the failure of two antiepileptic drugs