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Background: Comprehensive outcome measurement in pediatric palliative care focusing on the entire unit of care, that is, the affected child and its family, is crucial to depict treatment effects. Despite its increasing relevance, no appropriate multidimensional outcome measures exist for the largest patient group in this field, namely children with severe neurological impairments. Aim: The aim of this study was to develop and validate a family-centered multidimensional outcome measure for pediatric palliative care patients with severe neurological impairment that encompasses the entire unit of care. Design: Based on results of a qualitative study, the questionnaire was developed by consensus-based generation of questions. It was validated in a multicenter prospective study employing exploratory and confirmatory factor analyses as well as reliability and item analyses. Setting: A total of 11 pediatric palliative care teams across Germany aided in the recruitment of study participants. Questionnaires were answered by 149 parents of children with severe neurological impairment and 157 professional caregivers. Results: The exploratory factor analysis of parent data revealed a 6-factor structure of the questionnaire representing: symptoms, the child's social participation, normalcy, social support, coping with the disease and caregiver's competencies. This structure was verified by a confirmatory factor analysis of professional caregiver data. Five separate items regarding siblings, partners, and further symptoms not applicable for all patients were added to ensure full multidimensionality. Conclusion: A validated outcome tool for severely neurologically impaired pediatric palliative care patients, the FACETS-OF-PPC, now exists. Due to its concise length and appropriate psychometric properties, it is well suited for clinical application. [ABSTRACT FROM AUTHOR]

This study aims to address the questionnaire design challenges in cases wherein questions involve a large number of response options. Traditionally, these long-list questions are asked in open-ended or closed-ended formats. However, alternative interface design options are emerging in computer-assisted surveys that combine both interface designs. To investigate trade-offs of these alternative designs, a split-ballot experiment was conducted with a) a long list of radio buttons, b) a search tree (nested list of response options), and c) a combo box (combination of a text box and a drop-down box). Based on the question on the highest educational qualification attained from the Innovation Sample of the German Socio-Economic Panel, we investigated the interface design that facilitates respondents optimally and enhances the measurement quality. The findings indicate that combo boxes reduce the response burden and increase measurement details, whereas search trees and long lists reduce post-coding efforts. [ABSTRACT FROM AUTHOR]

Objectives: In the German National Cohort (GNC), 30,000 individuals are examined with whole-body MRI (wbMRI), of which about 3000 participants are expected to receive an incidental finding (IF) disclosure. In order to get feedback from participants and to evaluate the IF-management procedure of the wbMRI substudy, a follow-up questionnaire was developed. This single-center pilot trial was aimed to get a first impression on feasibility reproducibility and validity of such a survey in order to take necessary adjustments before initiating the survey among several thousand participants.Methods: The questionnaires were sent out in test-retest manner to 86 participants who received a wbMRI examination in January-February 2016 at the imaging center in Neubrandenburg. The ratio of participants with and without IF notification was 1:1. Descriptive statistics was performed.Results: A first response of 94% and completion proportion of 99% were achieved. Participants were satisfied with the examination procedure. Ninety-five percent of participants considered it very important to receive notification of IFs. Participants reported minimal stress levels while waiting for a possible IF notification letter, but high stress levels when an IF letter was received. Phrasing of the IF reports was rated in 97% as well understandable and in 55% as beneficial to health status.Conclusions: This questionnaire will serve researchers within the GNC as a fundamental instrument not only for quality management analyses but also for the investigation of still unacknowledged scientific and ethical questions contributing to evidence-based guidelines concerning the complex approach to IFs in future population-based imaging.Key Points: • Evidence-based guidelines for reporting incidental findings in population whole-body MRI are lacking. • Pilot-testing of a questionnaire for the evaluation of practical and ethical aspects of the procedure to report incidental findings in the German National Cohort shows a high level of acceptance and high return rate by participants. • Participants reported minimal stress levels while waiting for a possible incidental finding notification letter, which increased significantly, when such a letter was received. [ABSTRACT FROM AUTHOR]

Background: Currently, a suitable questionnaire in German language is not available to monitor the progression and evaluate the severity of irritable bowel syndrome (IBS). Therefore, this study aimed to translate the Gastrointestinal Symptom Rating Scale for Irritable Bowel Syndrome (GSRS-IBS) into German and to evaluate its psychometric qualities and factorial structure.Methods: This study is based on a total sample of 372 participants [62.6% female, mean age = 41 years (SD = 17 years)]. 17.5% of the participants had a diagnosis of IBS, 19.9% were receiving treatment for chronic inflammatory bowel disease, 12.1% of the participants were recruited from a psychosomatic clinic, and 50.5% belonged to a control group. All participants completed the German version of GSRS-IBS (called Reizdarm-Fragebogen, RDF), as well as the Gießen Subjective Complaints List (GBB-24) and the Hospital Anxiety and Depression Scale - German version (HADS-D).Results: The internal consistency of the RDF total scale was at least satisfactory in all subsamples (Cronbach's Alpha between .77 and .92), and for all subscales (Cronbach's Alpha between .79 and .91). The item difficulties (between .25 and .73) and the item-total correlations (between .48 and .83) were equally satisfactory. Principal axis analysis revealed a four-factorial structure of the RDF items, which mainly resembled the structure of the English original. Convergent validity was established based on substantial and significant correlations with the stomach-complaint scale of the GBB-24 (r = .71; p < .01) and the anxiety (r = .42; p < .01) and depression scales (r = .43; p < .01) of the HADS-D.Conclusion: The German version of the GSRS-IBS RDF proves to be an effective, reliable, and valid questionnaire for the assessment of symptom severity in IBS, which can be used in clinical practice as well as in clinical studies. [ABSTRACT FROM AUTHOR]

Background:As one part of scientific meta-knowledge, students’ meta-modelling knowledge should be promoted on different educational levels such as primary school, secondary school and university. This study focuses on the assessment of university students’ meta-modelling knowledge using a paper–pencil questionnaire. Purpose:The general purpose of this study was to assess and to describe university students’ meta-modelling knowledge. More specifically, it was analysed to what extent the meta-modelling knowledge, as expressed in a questionnaire, depends on the scientific discipline to which university students relate their answer and the concrete model to which they refer while answering. Sample:N = 184 students from one German university voluntarily participated in this study. Design and methods:The questionnaire was developed based on a theoretical framework for model competence and includes constructed response items asking about the purpose of models, ways for testing models and reasons for changing models. Students written answers were first analysed qualitatively based on the theoretical framework to decide whether they expressed advanced understandings or not. Further analyses then were conducted quantitatively. Results:Findings suggest that only few university students possess an advanced meta-modelling knowledge. However, significant more students who relate their answers to the STEM-disciplines expressed advanced understandings than those who referred to social sciences or linguistics/philology. Furthermore, university students who expressed an advanced meta-modelling knowledge referred to rather abstract kinds of models in order to explain their view. Conclusions:The present study supports the assumption that meta-modelling knowledge may be situated and contextualised. Both the scientific discipline and the concrete model to which university students refer seem to be relevant item features influencing university students’ expressed meta-modelling knowledge. Implications for assessment and teaching are discussed in the article. [ABSTRACT FROM AUTHOR]

With the formulation of a claim for a national uniform medication plan, the German government has taken an important step towards optimizing the documentation of medication for multimorbid patients. The aim of the research project “Medication Plan PLUS” is, amongst others, to identify previously unknown optimization potentials in the national medication plan and implement it into a more improved specification. The following work deals with the conceptualization of a questionnaire for the evaluation of optimization potentials within the national uniform medication plan. The focus lies on improving the health-related quality of life of the individual patients. In addition to the setting and the number of subjects, further research questions serve as the basis for the survey instrument defined for this purpose. The primary focus lies on questions that are aiming to determine the subjective perception of readability as well as the general acceptance and practicability of the medication plan. Although the national uniform medication plan has already been evaluated in various studies and project proposals, they show significant limitations which can be excluded in the project proposal for Medication Plan PLUS. [ABSTRACT FROM AUTHOR]

Measuring working time is not only an important objective of the EU Labour Force Survey (LFS), but also a highly demanding task in terms of methodology. Against the background of a recent debate on the comparability of working time estimates in France and Germany, this article presents a comparative assessment of the measurement of working time in the Labour Force Survey obtained in both countries. It focuses on the measurement of the hours actually worked, the key working-time concept for short-term economic analysis and the National Accounts. The contribution systematically analyses the differences in the measurement approaches used in France and Germany in order to identify the methodological effects that hinder comparability. It comes to the conclusion that the LFS overstates the difference in hours actually worked in France and Germany and identifies question comprehension, rounding, editing effects, as well as certain aspects of the sampling design, as crucial factors of a reliable measurement in particular of absences from work during the reference week. We recommend continuing the work started in the European Statistical System towards the development of a model questionnaire in order to improve cross-national harmonisation of key variables such as hours actually worked. [ABSTRACT FROM AUTHOR]

Purpose: Patient-centered health care implies that medical decisions are made jointly by physician and patient, based on patient needs. Aims were to (a) identify treatment goals for a new questionnaire on patient needs and benefits in nail psoriasis treatment; (b) analyze the importance of treatment goals in patients with nail psoriasis in general and in defined subgroups; and (c) determine the association between overall treatment goal importance and quality of life.Methods: The study comprised the following steps: qualitative survey on needs and burdens in 120 patients; development of items by an interdisciplinary expert group; item testing in 55 patients in four countries; revision of the questionnaire and assessment in 203 patients in six countries (Germany, Denmark, Italy, Spain, USA, Japan). The percentage of patients rating the goals as 'quite/very important' was compared between various patient subgroups.Results: Based on 692 free-text statements, 26 items were developed which were reduced to 24 items after pilot testing. Each of these treatment goals applied to the majority of patients in the multi-center study. Goal importance increased with severity of nail psoriasis, but not with age or disease duration. Manual dexterity and social interaction were of particular importance. Goal importance and quality of life were associated, but not redundant (r = 0.612, p < 0.001).Conclusions: Patients with nail psoriasis have manifold and specific treatment goals. Goal importance is a construct different from disease-specific quality of life and should be assessed separately. The new questionnaire can support goal setting in clinical practice. [ABSTRACT FROM AUTHOR]

Response propensities are increasingly being used during data collection for responsive survey design applications. Better propensity models, with more predictive power, are needed to guide responsive interventions during data collection. However, available data on both respondents and nonrespondents to improve these models are limited. This analysis investigates the usefulness of a new type of paradata, in the form of an interviewer observation taken at the call level, to increase the predictive power of propensity models. The interviewer observation investigated is the interviewer's assessment of the likelihood that a given respondent will participate in the survey, collected at each contact of a telephone study. We evaluate whether these ratings improve the fit and discrimination of "classic" response propensity models that include call record data and interviewer characteristics. Then, the performance of the interviewer observation is tested in a simulated responsive survey design, where propensity models are generated at several dates during data collection, to determine whether the observations improve the accuracy of the predictions made at these time points over using classic propensity models. The interviewer ratings not only contribute to the predictive power of the classic models overall but, on their own, appear to perform better than the classic model at predicting high probability cases in the responsive survey design context. [ABSTRACT FROM AUTHOR]

The project focussed on drawing up a common customer survey form, followed by a performance measurement, which led - apart from individual results for each participating library - to a meta-evaluation that put each library's performance in relation to the total evaluation. The most important results of the total evaluation which turned out mainly positive, are presented and explained. In this context, the results of the questions regarding effect measurement and future use are particularly interesting. [ABSTRACT FROM AUTHOR]

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The German version of the Copenhagen Psychosocial Questionnaire (COPSOQ) was established and tested in a sample of 2561 employees in order to: (a) assess the questionnaires' psychometric properties; and (b) develop an appropriate instrument to use in the assessment of psychosocial risk factors. A shortened version of the instrument was developed, reducing the number of items from 141 to 87. With this, a database has been established since 2005. In a cooperation model between science (Freiburg Research Centre of Occupational and Social Medicine) and companies or organizations, new COPSOQ data are added to the dynamically growing database with profession-specific profiles of psychosocial factors at work. In return, companies can compare their results with job-related data in the database, facilitating the interpretation of their results and the implementation of improvement measures. The COPSOQ database has reached 425,000 respondents. Ongoing projects will expand the German COPSOQ database and include representative samples. Furthermore, a job exposure matrix for psychosocial factors at work will be constructed in 2009. Finally, in several projects, a first assessment has been followed by efforts to improve the problematic areas of psychosocial working conditions. [ABSTRACT FROM AUTHOR]

Patients with bronchiectasis feature considerable symptom burden and reduced health-related quality of life (QOL). We provide the psychometric validation of the German translation of the disease-specific Quality of Life Questionnaire-Bronchiectasis (QOL-B), version 3.1, using baseline data of adults consecutively enrolled into the prospective German bronchiectasis registry PROGNOSIS. Overall, 904 patients with evaluable QOL-B scores were included. We observed no relevant floor or ceiling effects. Internal consistency was good to excellent (Cronbach's α ≥0.73 for each scale). QOL-B scales discriminated between patients based on prior pulmonary exacerbations and hospitalizations, breathlessness, bronchiectasis severity index, lung function, sputum volume, Pseudomonas aeruginosa status and the need for regular pharmacotherapy, except for Social Functioning, Vitality and Emotional Functioning scales. We observed moderate to strong convergence between several measures of disease severity and QOL-B scales, except for Social and Emotional Functioning. Two-week test-retest reliability was good, with intraclass correlation coefficients ≥0.84 for each scale. Minimal clinical important difference ranged between 8.5 for the Respiratory Symptoms and 14.1 points for the Social Functioning scale. Overall, the German translation of the QOL-B, version 3.1, has good validity and test-retest reliability among a nationally representative adult bronchiectasis cohort. However, responsiveness of QOL-B scales require further investigation during registry follow-up. [ABSTRACT FROM AUTHOR]