The sources of disease-related information for Estonia's rheumatoid arthritis patients: a qualitative study

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Objective.To describe rheumatoid arthritis patients' perceptions of being informed and of the value of the information obtained.Background.About the accessibility of the disease-specific information to the patients, a prerequisite for any kind of the patient empowerment, can be considered as a priority area for investigation.Design.Six focus groups (involving 27 patients) were conducted. For analysing the data, thematic analysis was applied.Results.The participants referred to the media and the Internet, in-patient units, physicians at out-patient consultations, patients organisations, fellow patients and their own experience as the sources of disease-related information. The information delivered by the physicians was valued highest; satisfaction with the information received from the in-patient units was expressed. The knowledge acquired through the experience was mentioned as being important for coping with the disease. The media was an easily accessible information channel, although the information from this source was less trusted. The access to the Internet was seen as being limited for certain patients groups. The availability of physician-delivered information was described as unsatisfactory due to the organisation of information transmittal in out-patient settings.Conclusions.The results indicated the current balance of information sources as being incongruous with the provision of systematic and reliable disease-related information. The available information may also be qualitatively incomplete.Relevance to clinical practice.Recognition of the weak and strong points of the structure of information provision is valuable when considering the development of educational opportunities for rheumatoid arthritis patients.

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