Planning and reporting of quality-of-life outcomes in cancer trials.

BACKGROUND: Information about the impact of cancer treatments on patients' quality of life (QoL) is of paramount importance to patients and treating oncologists. Cancer trials that do not specify QoL as an outcome or fail to report collected QoL data, omit crucial information for decision making. To estimate the magnitude of these problems, we investigated how frequently QoL outcomes were specified in protocols of cancer trials and subsequently reported. DESIGN: Retrospective cohort study of RCT protocols approved by six research ethics committees in Switzerland, Germany, and Canada between 2000 and 2003. We compared protocols to corresponding publications, which were identified through literature searches and investigator surveys. RESULTS: Of the 173 cancer trials, 90 (52%) specified QoL outcomes in their protocol, 2 (1%) as primary and 88 (51%) as secondary outcome. Of the 173 trials, 35 (20%) reported QoL outcomes in a corresponding publication (4 modified from the protocol), 18 (10%) were published but failed to report QoL outcomes in the primary or a secondary publication, and 37 (21%) were not published at all. Of the 83 (48%) trials that did not specify QoL outcomes in their protocol, none subsequently reported QoL outcomes. Failure to report pre-specified QoL outcomes was not associated with industry sponsorship (versus non-industry), sample size, and multicentre (versus single centre) status but possibly with trial discontinuation. CONCLUSIONS: About half of cancer trials specified QoL outcomes in their protocols. However, only 20% reported any QoL data in associated publications. Highly relevant information for decision making is often unavailable to patients, oncologists, and health policymakers.

Analyse de la situation de la Consultation de santé sexuelle Planning familial de Profa

Le présent rapport est structuré de la manière suivante : le chapitre 2 décrit la méthode utilisée ; le chapitre 3 est consacré à l'activité de consultation et le chapitre 4 à l'action communautaire. Le chapitre 5 concerne la notion de centre de référence. Une analyse ciblée de la littérature, ainsi que les consultations de santé sexuelle dans les autres cantons romands sont présentés au chapitre 6. Les conclusions et recommandations sont exposées au chapitre 7.

Best practice report on policy learning infrastructures in innovative labour market policies

This report synthesizes the findings of 11 country reports on policy learning in labour market and social policies that were conducted as part of WP5 of the INSPIRES project, which is funded by the 7th Framework Program of the EU-Commission. Notably, this report puts forward objectives of policy learning, discusses tools, processes and institutions of policy learning and presents the impacts of various tools and structures of the policy learning infrastructure for the actual policy learning process. The report defines three objectives of policy learning: evaluation and assessment of policy effectiveness, vision building and planning, and consensus building. In the 11 countries under consideration, the tools and processes of the policy learning, infrastructure can be classified into three broad groups: public bodies, expert councils, and parties, interest groups and the private sector. Finally, we develop four recommendations for policy learning: Firstly, learning processes should keep the balance between centralisation and plurality. Secondly, learning processes should be kept stable beyond the usual political business cycles. Thirdly, policy learning tools and infrastructures should be sufficiently independent from political influence or bias. Fourth, Policy learning tools and infrastructures should balance out mere effectiveness, evaluation and vision building.