BackgroundInflammatory Bowel Disease (IBD) patients are confronted with needs and concerns related to their disease.AimTo explore information expectations of patients included in a national bilingual IBD cohort in Switzerland (SIBDC).MethodsThis is a mixed-methods study, comprising 1) a semi-narrative survey sent to 1506 patients from the SIBDC and 2) two focus groups conducted with 14 patients to explore and assess the relevance of the survey’s findings. Data collected within the framework of the SIBDC was used to characterize survey’s responders.Results728 patients (48%) replied to the survey: 52.5% females, 56% Crohn’s disease (CD), 87% secondary/tertiary level educated, 70% full/part-time employed. On average, 47% of patients sought for information, regardless of the disease stage; 27% of them were dissatisfied with information received at the time of first symptoms. During flares, 43% were concerned about drugs and therapies; in remission, 57% had concerns on research and developments; 27% searched for information linked to daily disease management. Information-seeking increased when active disease, for CD with high levels of perceived stress (OR = 2.47; p = 0.003), and for all with higher posttraumatic stress symptoms. The focus groups confirmed a perceived lack of information about general functioning, disease course, treatments and their risks, extra-intestinal symptoms and manifestations.ConclusionsInformation remains insufficient for IBD patients. Lack of information in specific domains can potentially cause stress and hinder detection of symptoms. Better information should be considered as a potentially important component in improving patients’ outcomes in IBD.

BackgroundMultiple barriers to knowledge translation in medicine have been identified (ranging from information overload to abstraction of models), leading to important implementation gaps. This study aimed at assessing the suggestions of practicing physicians for possible improvements of knowledge translation (KT) effectiveness into clinical practice.MethodsWe used a mixed methods design. French- German- and Italian-speaking general practitioners, psychiatrists, orthopaedic surgeons, cardiologists, and diabetologists practicing in Switzerland were interrogated through semi-structured interviews, focus group discussions, and an online survey.ResultsA total of 985 physicians from three regions of Switzerland participated in the online survey, whereas 39 participated in focus group discussions and 14 in face-to-face interviews. Physicians expressed limitations and difficulties related to KT into their daily practice. Several barriers were identified, including influence and pressure of pharmaceutical companies, non-publication of negative results, mismatch between guidelines and practice, education gaps, and insufficient collaboration between research and practice. Suggestions to overcome barriers were improving education concerning the evaluation of scientific publications, expanding applicability of guidelines, having free and easy access to independent journals, developing collaborations between research and practice, and creating tools to facilitate access to medical information.ConclusionsOur study provides suggestions for improving KT into daily medical practice, matching the views, needs and preferences of practicing physicians. Responding to suggestions for improvements brought up by physicians may lead to better knowledge translation, higher professional satisfaction, and better healthcare outcomes.Electronic supplementary materialThe online version of this article (doi:10.1186/s12961-016-0120-5) contains supplementary material, which is available to authorized users.

BackgroundPatient-reported disease perceptions are important components to be considered within a holistic model of quality of care. Gender may have an influence on these perceptions. We aimed to explore gender-specific concerns of patients included in a national bilingual inflammatory bowel disease cohort.MethodsFollowing a qualitative study, we built a questionnaire comprising 37 items of concern. Answers were collected on a visual analog scale ranging from 0 to 100. Principal axis factor analysis was used to explore concern domains. Linear multiple regressions were conducted to assess associations with patient characteristics.ResultsOf 1102 patients who replied to the survey, 54% were female and 54% had Crohn’s disease. We identified six domains of concern: socialization and stigmatization, disease-related constraints and uncertainty, symptoms and their impact on body and mind, loss of body control (including sexuality), disease transmission, and long-term impact of the disease. Cancer concerns were among the highest scored by all patients (median 61.8). Severity of symptoms was the only factor associated with concerns, unrelated to dimension and gender (p<0.015). In women, being >40 years decreased disease-related constraints and uncertainty concerns, and being at home or unemployed increased them. Treatments were associated with increased socialization and stigmatization and with increased disease-related constraints and uncertainty concerns in men. Overall, psychosomatic characteristics were highly associated with concerns for both men and women. Depending on the concern dimensions, increased levels of concern were associated with the highest signs of anxiety in women or depression in men, as well as lower health-related quality of life in men.ConclusionsPatients have numerous concerns related to their illness that need to be reassessed regularly. Concerns differ between men and women, suggesting that information and communication about the disease should take gender differences and subjective perceptions of quality of life into consideration.

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