Paediatric health related quality of life : a European perspective : instrument development, validation, and use in clinical practice

Th e DISABKIDS project is a European collaboration of clinicians and investigators that received funding from the European Commission in 2001. Over the last four years the DISABKIDS project's aim was to cross-nationally develop a new European health related quality of life (HRQoL) instrument for children and adolescents with a chronic medical condition 1(Box 1). Some of the steps taken during the developmental process of the European DISABKIDS HRQoL instrument for children and adolescents with a chronic medical condition are described in this thesis. Data from the asthma population is a recurring theme in most chapters as the Dutch DISABKIDS centre operated as asthma consultantLEI Universiteit Leiden(Klinisch) epidemiologisch onderzoek bij kindere

The European DISABKIDS project: development of seven condition-specific modules to measure health related quality of life in children and adolescents

BACKGROUND: The European DISABKIDS project aims to enhance the Health Related Quality of Life (HRQoL) of children and adolescents with chronic medical conditions and their families. We describe the development of the seven cross-nationally tested condition-specific modules of the European DISABKIDS HRQoL instrument in a population of children and adolescents. The condition-specific modules are intended for use in conjunction with the DISABKIDS chronic generic module. METHODS: Focus groups were used to construct the pilot version of the DISABKIDS condition-specific HRQoL modules for asthma, juvenile idiopathic arthritis, atopic dermatitis, cerebral palsy, cystic fibrosis, diabetes and epilepsy. Analyses were conducted on pilot test data in order to construct field test versions of the modules. A series of factor analyses were run, first, to determine potential structures for each condition-specific module, and, secondly, to select a reduced number of items from the pilot test to be included in the field test. Post-field test analyses were conducted to retest the domain structure for the final DISABKIDS condition-specific modules. RESULTS: The DISABKIDS condition-specific modules were tested in a pilot study of 360 respondents, and subsequently in a field test of 1152 respondents in 7 European countries. The final condition-specific modules consist of an 'Impact' domain and an additional domain (e.g. worry, stigma, treatment) with between 10 to 12 items in total. The Cronbach's alpha of the final domains was found to vary from 0.71 to 0.90. CONCLUSION: The condition-specific modules of the DISABKIDS instrument were developed through a step-by-step process including cognitive interview, clinical expertise, factor analysis, correlations and internal consistency. A cross-national pilot and field test were necessary to collect these data. In general, the internal consistency of the domains was satisfactory to high. In future, the DISABKIDS instrument may serve as a useful tool with which to assess HRQoL in children and adolescents with a chronic condition. The condition-specific modules can be used in conjunction with the DISABKIDS chronic generic module

Prognostic value of histopathologic traits independent of stromal tumor-infiltrating lymphocyte levels in chemotherapy-naïve patients with triple-negative breast cancer

Background: In the absence of prognostic biomarkers, most patients with early-stage triple-negative breast cancer (eTNBC) are treated with combination chemotherapy. The identification of biomarkers to select patients for whom treatment de-escalation or escalation could be considered remains an unmet need. We evaluated the prognostic value of histopathologic traits in a unique cohort of young, (neo)adjuvant chemotherapy-naïve patients with early-stage (stage I or II), node-negative TNBC and long-term follow-up, in relation to stromal tumor-infiltrating lymphocytes (sTILs) for which the prognostic value was recently reported. Materials and methods: We studied all 485 patients with node-negative eTNBC from the population-based PARADIGM cohort which selected women aged &lt;40 years diagnosed between 1989 and 2000. None of the patients had received (neo)adjuvant chemotherapy according to standard practice at the time. Associations between histopathologic traits and breast cancer-specific survival (BCSS) were analyzed with Cox proportional hazard models. Results: With a median follow-up of 20.0 years, an independent prognostic value for BCSS was observed for lymphovascular invasion (LVI) [adjusted (adj.) hazard ratio (HR) 2.35, 95% confidence interval (CI) 1.49-3.69], fibrotic focus (adj. HR 1.61, 95% CI 1.09-2.37) and sTILs (per 10% increment adj. HR 0.75, 95% CI 0.69-0.82). In the sTILs &lt;30% subgroup, the presence of LVI resulted in a higher cumulative incidence of breast cancer death (at 20 years, 58%; 95% CI 41% to 72%) compared with when LVI was absent (at 20 years, 32%; 95% CI 26% to 39%). In the ≥75% sTILs subgroup, the presence of LVI might be associated with poor survival (HR 11.45, 95% CI 0.71-182.36, two deaths). We confirm the lack of prognostic value of androgen receptor expression and human epidermal growth factor receptor 2 -low status. Conclusions: sTILs, LVI and fibrotic focus provide independent prognostic information in young women with node-negative eTNBC. Our results are of importance for the selection of patients for de-escalation and escalation trials.</p

‘The Birds Were in the Net’: Reactions in the Netherlands to News of the St Bartholomew’s Day Massacre, 1572

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Rumours of revolt: Civil war and the emergence of a transnational news culture in France and the Netherlands, 1561-1598

Historians of the French Wars of Religion and the Dutch Revolt have long observed the interconnected nature of these two parallel crises and have pointed at a mutual hunger for news among the French and the Dutch. Yet these assumptions are primarily based on research into pamphlet production and diplomatic exchange. Through the study of a great number of diaries and chronicles from the Netherlands and France, complemented with other sources such as letters, pamphlets, songs and prints, this study aims to contribute to our knowledge of the perception of these two wars among contemporaries. By examining the reception of news in two countries over a period of four decades, it aims to offer a new perspective on the transnational history of the French Wars of Religion and the Dutch Revolt by analysing what news the inhabitants of France and the Netherlands received and recorded. Second, it aspires to add to the burgeoning field of early modern news scholarship with a case study on the reception of international news. And third, it does so through the study of early modern diary and chronicle practices, which recently have received attention as one of the topics within the current scholarly fascination for methods of archiving and information management in the early modern era. It argues that the second half of the sixteenth century witnessed the gradual emergence of a transnational news culture. It also shows how the increase in international religious polarization went together with an increase in media-savviness among sixteenth-century chroniclers

Discrediting the Dutch. A French Account of the Year of Disaster for Arab Audiences

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