Background Patients with rheumatic diseases need a multidisciplinary approach in order to better understand and manage their disease. It is therefore important that they have guaranteed and continuous access to health care professionals who can assist them in coping with everyday problems, such as pain, fatigue, insomnia, mobility difficulties, improvement of daily activities, and can also provide them with support needed to deal with psychological issues. In Slovenia, additional activities are made possible to patients through the national Rheumatology Association. Activities that would help patients and their relatives to improve their problems and facilitate daily activities are presented in the form of workshops.
Objectives The objective of our research was to obtain the following information: in which fields the patients with rheumatic diseases need most education, which problems stand out, to what extent are they willing to help themselves, and how they would achieve their goals.
Methods A representative sample of patients (n=101; 29 rheumatoid arthritis patients, 72 patients with various rheumatic diseases) were included in the study. The questionnaire was divided into several sections covering specific areas including some demographic questions. The following possible answers were offered: “Does not matter at all; Slightly important; Quite important; and Very important”. One hundred and one fully completed questionnaires were returned for analysis. 71 women and 30 men participated (mean age 58.2±12 years). Statistical analysis was performed with SPSS 17 statistical package.
Results 64% of surveyed patients have identified mobility difficulties. The most important area in which they wish to receive additional assistance is disease management (96%), then adverse drug reactions (93%), treatment of disease (90%), and the importance of examinations (88.8%). Joint protection proved to be very important (89.4%), and also the methods of load lifting 74.9%. 73% of respondents were interested in overcoming fatigue, and in regard to self-help, 82.5% of patients want to learn techniques of maintaining their flexibility. Variations in interests between men (M) and women (W) were found in the field of self-medications with food and vitamins (M 63.3%, W 77.4%; p=0.23), in managing emotions (M 56.7%, W 70.45; p=0.42), and the impact of diseases on relatives (M 70%, W 83%; p=0.14), but the differences were not statistically significant.
Conclusions It is clear from the questionnaires that, to a large extent, patients want to obtain assistance and additional information in the field of cognition and disease management, and in resolving the daily problems they face. With the education of correct techniques of joint protection and maintenance of mobility, as well as other advice to help patients with rheumatic diseases, their quality of life would be maintained in an effective way.
Disclosure of Interest None Declared