PARE0013 Sources of information and knowledge about rheumatic diseases among people with rheumatic diseases in poland and in other european countries

J. Grygielska,A. Kłak, J. Owoc, E. Gawińska-Drużba,F. Raciborski

Annals of the Rheumatic Diseases(2018)

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摘要
Background Knowledge on rheumatic and musculoskeletal diseases (RMDs) is an important factor in helping patients live independent lives as long as possible. The internet and easy access to all sorts of information make it seem that delivering appropriate information to patients is one of the key objectives of health promotion. Objectives The aim of this study was to evaluate patients’ knowledge on RMDs and find out how and when they seek and retrieve relevant information. The results provide an opportunity to increase efforts in proper education of patients and health care professionals, reduce adverse effects of incorrect information and increase self-awareness as well as personal health responsibility among patients. Methods We used questionnaires for patients with RMDs and carried out focus group interviews. The Computer-Assisted Web Interview Questionnaire was divided into 2 sections: one describing characteristics of respondents and evaluating importance of various information and its sources and the latter which tested knowledge on RMDs. The respondents were asked to rate their own knowledge and information provided by their physician. All the data were collected in 2017. We used two language versions of the questionnaire – Polish and English for international patients. The results from both groups were compared. Both versions were distributed with the help of patient organizations. The link to the English version was distributed with the kind support from EULAR. Results We received 207 on-line responses – 140 in Polish and 67 in English. Both language groups had similar characteristics, however the English-speaking respondents (EG) had a university degree more often (82% vs. 64%). The largest group of respondents were experienced patients with more than 10 years from diagnosis (47% in Polish group (PG) and 54% in EG). The EG was more diversified in terms of a diagnosis. The information about a disease and methods of treatment were the most important pieces of information for the respondents (83% of PG rated it very important and 78% in EG) followed by finding a doctor (79% vs. 76% respectively). The three most important sources of information were: PG-Internet 46%, rheumatologist 35%, medical books 15%; EG- Internet 43%, rheumatologist 21%, lectures for patients – 15%. Conclusions The Results of Polish and English surveys were similar. The English group was more often interested in facilitating everyday life and finding support in living with a disease. The test of knowledge on RMDs results confirmed that myths are still present among some patients. As much as 25% of Polish and 49% of international respondents associate occurrence of inflammatory rheumatic disease with weather conditions. Majority of people (94% in both groups) are aware that moderate physical activity is recommended in rheumatic diseases. The results also suggest insufficient knowledge about treatment methods and curability of RMDs It is important to increase efforts in dissemination of appropriate knowledge among patients and health professionals using different methods. Such attitude should help in minimizing adverse effects that result from lack of knowledge or self-awareness. Acknowledgements The study was financed from the statutory funds of the National Institute of Geriatrics, Rheumatology and Rehabilitation. Disclosure of Interest None declared
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