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Disability in migraine patients: Italian experience

Migraine is associated with functional impairment. The migraine disability assessment (MIDAS) scale is a scientific instrument which captures headache–related disability. The Italian version of MIDAS was developed through a multi–step standardized methodology. Studies on Italian clinical samples showed that migraine patients were disabled in all activity domains. Non–work...

Expanded Access Programme: looking for a common definition

Therapeutic use of an unauthorised drug (or of an authorised drug for an unauthorised indication) for patients with a life-threating disease is permitted outside a clinical trial as an Expanded Access Programme (EAP). The regulations regarding EAPs is not the same all over the world. For example, the recommendation of the European Medicines Agency (EMA) in EU countries also...

Knowledge transfer: what drug information would specialist doctors need to support their clinical practice? Results of a survey and of three focus groups in Italy

Background The wide offer of information on pharmaceuticals does not often fulfill physicians’ needs: problems of relevance, access, quality and applicability are widely recognized, and doctors often rely on their own experience and expert opinions rather than on available evidence. A quali-quantitative research was carried out in Italy to provide an overview on information...

Knowledge transfer: what drug information would specialist doctors need to support their clinical practice? Results of a survey and of three focus groups in Italy

The wide offer of information on pharmaceuticals does not often fulfill physicians’ needs: problems of relevance, access, quality and applicability are widely recognized, and doctors often rely on their own experience and expert opinions rather than on available evidence. A quali-quantitative research was carried out in Italy to provide an overview on information seeking behavior...

Involving a Citizens’ Jury in Decisions on Individual Screening for Prostate Cancer

Aims Most public health agencies and learned societies agree that the prostate-specific antigen (PSA) test in asymptomatic men should not be recommended, on account of its potential for harm. Yet PSA is still widely used as a screening test and is not being abandoned. This remains a significant public health issue, and citizens’ engagement is needed. This study was designed to...

Establishing a library of resources to help people understand key concepts in assessing treatment claims—The “Critical thinking and Appraisal Resource Library” (CARL)

Austvoll-Dahlgren, Lena Nordheim, L. Kendall Krause, Paola Mosconi, Tammy Hoffmann, Leila Cusack, Loai Albarqouni. Methodology: John C. Castle, Iain Chalmers, Douglas Badenoch, Andrew D. Oxman, Astrid ... Woloshin, Amanda Burls, Paola Mosconi, Tammy Hoffmann, Leila Cusack, Loai Albarqouni. Software: John C. Castle, Patricia Atkinson, Douglas Badenoch. Supervision: Andrew D. Oxman, Astrid Austvoll-Dahlgren

Development and assessment of a website presenting evidence-based information for people with multiple sclerosis: the IN-DEEP project

Background People with multiple sclerosis (MS) are increasingly using the Internet in the daily management of their condition. They search for high-quality information in plain language, from independent sources, based on reliable and up-to-date evidence. The Integrating and Deriving Evidence, Experiences and Preferences (IN-DEEP) project in Italy and Australia aimed to provide...

Open-access clinical trial registries: the Italian scenario

interests. Authors contributions The authors contributed equally to this work. Authors information Paola Mosconi, Biol Sci D, Head of the Laboratory for medical research and consumer involvement, Istituto

Does a consumer training work? a follow-up survey of the PartecipaSalute training programs

BackgroundWhen properly trained through training programs on epidemiology, clinical research and healthcare policy, members of patients’/consumers’ organizations could be helpful for a patient-oriented healthcare system. Since 2006 the not for profit project PartecipaSalute has organized periodic editions of a training program for representatives of citizens’/patients...

Patient Organizations’ Funding from Pharmaceutical Companies: Is Disclosure Clear, Complete and Accessible to the Public? An Italian Survey

Background Many patients’ and consumers’ organizations accept drug industry funding to support their activities. As drug companies and patient groups move closer, disclosure become essential for transparency, and the internet could be a useful means of making sponsorship information accessible to the public. This survey aims to assess the transparency of a large group of Italian...

A European multi-language initiative to make the general population aware of independent clinical research: the European Communication on Research Awareness Need project

Mosconi 0 Gerd Antes Giorgio Barbareschi Amanda Burls Jacques Demotes-Mainard Iain Chalmers Cinzia Colombo 0 Silvio Garattini 0 Christian Gluud Gill Gyte Catherine Mcllwain Matt Penfold Nils Post Roberto

Informing Women on Menopause and Hormone Therapy: Know the Menopause a Multidisciplinary Project Involving Local Healthcare System

BackgroundHormone therapy (HT) in the menopause is still a tricky question among healthcare providers, women and mass media. Informing women about hormone replacement therapy was a Consensus Conference (CC) organized in 2008: the project Know the Menopause has been launched to shift out the results to women and healthcare providers and to assess the impact of the cc’s statement...

Informing women about hormone replacement therapy: the consensus conference statement

Background The risks/benefits balance of hormone replacement therapy is controversial. Information can influence consumers' knowledge and behavior; research findings about hormone replacement therapy are uncertain and the messages provided by the media are of poor quality and incomplete, preventing a fully informed decision making process. We therefore felt that an explicit...

Quality of life in colon cancer patients with skin side effects: preliminary results from a monocentric cross sectional study

Background Epidermal growth factor receptor inhibitors are widely prescribed anticancer drugs. Patients treated commonly develop dermatologic adverse drugs reactions, but rarely they are involved in systematic evaluation of their quality of life. This monocentric cross sectional study is carried out to assess quality of life in colon cancer patients experienced skin side effects...

Presenting evidence-based health information for people with multiple sclerosis: the IN-DEEP project protocol

Synnot 0 Michael Summers 0 Deirdre Beecher Cinzia Colombo Paola Mosconi Mario A Battaglia Sue Shapland Richard H Osborne Melanie Hawkins 0 Centre for Health Communication and Participation, Australian

Fixed and dynamic health-related quality of life measurements

Measuring population health is important to evaluate the impact of interventions, to monitor the changes in health status, and to predict the need for health care. A number of tools have been developed to measure quality of life and health-related quality of life. According with the current taxonomy, the questionnaires may be classified as generic or specific, multidimensional or...

Health–related quality of life (HRQOL) and migraine

Abstract Although the genuine interest in measuring qualitative aspects of life has increased in the medical field together with our capability to transform patients’ subjective reports, opinions and ratings in standardized pieces of information, the debate about the true objective to measure, the focus and the terminology is still lively. Many instruments, both generic and...

Development and validation of the short version of the Psychological General Well-Being Index (PGWB-S)

Background The PGWBI is a 22-item health-related Quality of Life (HRQoL) questionnaire developed in US which produces a self-perceived evaluation of psychological well-being expressed by a summary score. The PGWBI has been validated and used in many countries on large samples of the general population and on specific patient groups. Recently a study was carried out in Italy to...

Health-related quality of life and need for IVF in 1000 Italian infertile couples

BACKGROUND:A specific and still poorly investigated issue in the field of infertility is represented by the impact that the need for IVF techniques may have on health-related quality of life (HRQoL). METHODS: A total of 1000 consecutive couples (1000 women and 1000 men) were invited to complete the Health Survey Short Form (SF-36) questionnaire separately, prior to initiating...