Measuring patient-reported outcomes: moving beyond misplaced common sense to hard science

Interest in the patient's views of his or her illness and treatment has increased dramatically. However, our ability to appropriately measure such issues lags far behind the level of interest and need. Too often such measurement is considered to be a simple and trivial activity that merely requires the application of common sense. However, good quality measurement of patient-reported outcomes is a complex activity requiring considerable expertise and experience. This review considers the most important issues related to such measurement in the context of chronic disease and details how instruments should be developed, validated and adapted for use in additional languages. While there is often consensus on how best to undertake these activities, there is generally little evidence to support such accord. The present article questions these orthodox views and suggests alternative approaches that have been shown to be effective

The Rotterdam Study: 2012 objectives and design update

The Rotterdam Study is a prospective cohort study ongoing since 1990 in the city of Rotterdam in The Netherlands. The study targets cardiovascular, endocrine, hepatic, neurological, ophthalmic, psychiatric, dermatological, oncological, and respiratory diseases. As of 2008, 14,926 subjects aged 45 years or over comprise the Rotterdam Study cohort. The findings of the Rotterdam Study have been presented in over a 1,000 research articles and reports (see www.erasmus-epidemiology.nl/rotterdamstudy). This article gives the rationale of the study and its design. It also presents a summary of the major findings and an update of the objectives and methods

Report from the first European Dermato-Epidemiology Network forum.

The first European Dermato-Epidemiology Network (EDEN) forum was held on 30-31 March 2017 in Madrid, Spain. Dermatoepidemiology describes the study of causes, prevention, health services research and evaluation of interventions of skin diseases. EDEN aims to promote high-quality research, share expertise and facilitate collaboration. These aims were achieved during the EDEN forum by including a preconference course on skin cancer epidemiology; having excellent world-leading guest speakers on causality, quality of care, pharmacoepidemiology and missing data analysis; and including delegates who presented and discussed innovative research findings. The meeting brought together delegates from 11 different countries. We welcome everyone with an interest in clinical research and epidemiology related to skin disease to attend next year's meeting in March 2018 in Berlin

Preliminary reliability and validity of Persian version of the Family Dermatology Life Quality Index (FDLQI)

Purpose: Family Dermatology Life Quality Index (FDLQI) is an instrument for assessing the quality of life of family members of dermatologic patients. The aim of this study was to describe the cultural adaptation of this questionnaire and to assess psychometric properties of the Persian version. Methods: At first, the questionnaire was translated into Persian, and then back-translation was performed. The whole cycle was repeated until a consensus was reached about the optimal translation. In the next step, cognitive debriefing was performed, and after approval of the Persian version by FDLQI developers, it was distributed among 100 family members of dermatological patients in order to evaluate its validity and reliability. Results: Mean age of participants was 37.1 years (±12.3). Mean score of FDLQI was 15.4 (±5.5) with maximum and minimum scores of 30 and 6, respectively. The quality of life of studied participants showed no significant difference based on age-group, sex, educational level and the family relationship. Cronbach’s alpha was calculated as 0.87. Exploratory factor analysis revealed a one-factor solution that accounted for 40.7 % of the variance. The unidimensional model was supported by confirmatory factor analysis. Conclusions: The results of the present study showed that the Persian version of FDLQI has acceptable factorial validity and internal consistency reliability