The significant effect of endometriosis on physical, mental and social wellbeing: results from an international cross-sectional survey.

STUDY QUESTION To what extent do the management of endometriosis and the symptoms that remain after treatment affect the quality of life in women with the disease? SUMMARY ANSWER Many women with endometriosis had impaired quality of life and continued to suffer from endometriosis-associated symptoms even though their endometriosis has been managed in tertiary care centres. WHAT IS KNOWN ALREADY The existing literature indicates that quality of life and work productivity is reduced in women with endometriosis. However, most studies have small sample sizes, are treatment related or examine newly diagnosed patients only. STUDY DESIGN, SIZE, DURATION A cross-sectional questionnaire-based survey among 931 women with endometriosis treated in 12 tertiary care centres in 10 countries. PARTICIPANTS/MATERIALS, SETTING, METHODS Women diagnosed with endometriosis who had at least one contact related to endometriosis-associated symptoms during 2008 with a participating centre were enrolled into the study. The study investigated the effect of endometriosis on education, work and social wellbeing, endometriosis-associated symptoms and health-related quality of life, by using questions obtained from the World Endometriosis Research Foundation (WERF) GSWH instrument (designed and validated for the WERF Global Study on Women's Health) and the Short Form 36 version 2 (SF-36v2). MAIN RESULTS AND THE ROLE OF CHANCE Of 3216 women invited to participate in the study, 1450 (45%) provided informed consent and out of these, 931 (931/3216 = 29%) returned the questionnaires. Endometriosis had affected work in 51% of the women and affected relationships in 50% of the women at some time during their life. Dysmenorrhoea was reported by 59%, dyspareunia by 56% and chronic pelvic pain by 60% of women. Quality of life was decreased in all eight dimensions of the SF-36v2 compared with norm-based scores from a general US population (all P < 0.01). Multivariate regression analysis showed that number of co-morbidities, chronic pain and dyspareunia had an independent negative effect on both the physical and mental component of the SF-36v2. LIMITATIONS, REASONS FOR CAUTION The fact that women were enrolled in tertiary care centres could lead to a possible over-representation of women with moderate-to-severe endometriosis, because the participating centres typically treat more complex and referred cases of endometriosis. The response rate was relatively low. Since there was no Institute Review Board approval to do a non-responder investigation on basic characteristics, some uncertainty remains regarding the representativeness of the investigated population. WIDER IMPLICATIONS OF THE FINDINGS This international multicentre survey represents a large group of women with endometriosis, in all phases of the disease, which increases the generalizability of the data. Women still suffer from frequent symptoms, despite tertiary care management, in particular chronic pain and dyspareunia. As a result their quality of life is significantly decreased. A patient-centred approach with extensive collaboration across disciplines, such as pain specialists, psychologists, sexologists and social workers, may be a valuable strategy to improve the long-term care of women with endometriosis. STUDY FUNDING/COMPETING INTEREST(S) The WERF EndoCost study is funded by the World Endometriosis Research Foundation (WERF) through grants received from Bayer Schering Pharma AG, Takeda Italia Farmaceutici SpA, Pfizer Ltd and the European Society of Human Reproduction and Embryology. The sponsors did not have a role in the design and conduct of the study; collection, management, analysis and interpretation of the data; and preparation, review or approval of the manuscript. L.H. is the chief executive and T.D. was a board member of WERF at the time of funding. T.D. holds the Merck-Serono Chair in Reproductive Medicine and Surgery, and the Ferring Chair in Reproductive Medicine at the Katholieke Universiteit Leuven in Belgium and has served as consultant/research collaborator for Merck-Serono, Schering-Plough, Astellas and Arresto.

Multilingualism and age:The consequences of retirement on multilingual competence

OBJECTIVES: The research question for this project mainly concentrates on the sociolinguistic aspects of a socalled “language related major life event” (De Bot, 2007): retirement. “Language related major life events” are events in the lifespan that are important for changes happening in the linguistic setting which influence the language development. In my paper I will explore changes happening around retirement in regard to multilingual competence. The focus will be on two groups: Italian migrants living in the city of Berne and Swissgerman-speakers, both at the age around retirement. The above mentioned changes can take place on two levels. (1) On the one hand, people have more time for curricular activities after retirement, which they can use in order to learn new languages or to improve their language skills. In this case we are dealing with the concept of “lifelong learning”. (2) On the other hand, language competence can be lost due to the (partial) loss of the retiree’s social network at their former workplace. METHODS: I will first examine these processes by using quantitative questionnaires in order to obtain general information on demographic data, the social situation, and a self-assessment of linguistic skills. Secondly, I will use qualitative interviews to gain in-depth information on the linguistic changes happening around retirement and their link to different factors, such as social networks, education, gender or the language biography. RESULTS: Since the project is still in its early stages of development, clear results can’t be mentioned yet. By May 2012 I will be able to present results of the quantitative study as well as a first glance into the results of the qualitative part of the project. CONCLUSION: The results of this project are meant to benefit the better insight into different aspects that haven’t been looked at in detail till this point. (1) What is the general and linguistic situation of Italian migrants who decided to remain in Switzerland after retirement and how can their linguistic skills affect their quality of living? (2) Who decides to learn a new language after retirement and how should language courses for older people be designed?