Implementation of the Sapere Migliora Information aid for newly diagno

Other measures (1)

Background and study aims Multiple sclerosis (MS) is a condition which affects the brain and spinal cord, causing problems with vision, arm or leg movement, sensation and balance. Information aids are increasing being used to improve patients' understanding of their illness, prognosis and treatment, and help them participate more actively in decision-making. The educational materials available for people with MS include booklets, websites and videos, but few have been tested for their value in educating their target audience. A recent study demonstrated the effectiveness, in terms of higher MS knowledge and care satisfaction, of the Sapere Migliora information aid, which consists of a website-assisted personal interview with a doctor, and a take-home booklet. The aims of this study are to evaluate the use of the updated and revised Sapere Migliora information aid in everyday practice, and to assess its acceptability and effectiveness compared to the take-home booklet/website consultation alone. The focus will be on the short-term results (about one month after MS diagnosis) because this is an especially taxing period for people with MS. Who can participate? Patients aged 18 and over who have received an MS diagnosis in the last 2 weeks What does the study involve? This study has two parts: Survey A and Survey B. Survey A participants receive the updated Sapere Migliora information aid. This consists of a personal interview with a health professional with MS expertise which takes place within 2 weeks of their MS diagnosis. At the end of the interview, participants receive the take-home Sapere Migliora booklet and a website password, together with four study questionnaires (assessing MS knowledge, satisfaction with care, anxiety and depressive symptoms, sociodemographic information and satisfaction with the information aid). Participants are asked to complete and send the questionnaires to the study center within 6 weeks using a return-paid envelope. Survey B is conducted in 19 MS centers, randomly selected from the 220 Italian MS centers. After receiving their MS diagnosis, participants are given the take-home Sapere Migliora booklet/website password and the four study questionnaires described above. The effectiveness of the updated Sapere Migliora information aid (Survey A) is compared to the take-home booklet/website consultation alone (Survey B) What are the possible benefits and risks of participating? The previous study found that people with MS who received the information aid were more knowledgeable and satisfied with care compared to those who received standard care. Anxiety symptoms are common around MS diagnosis. However, the information provided with the Sapere Migliora information aid did not increase anxiety. Anxiety and mood symptoms are assessed in the two surveys. Where is the study run from? A total of 24 Italian MS centres take part in this study. The lead centre is the Foundation IRCCS Neurological Institute C. Besta, Milan. When is the study starting and how long is it expected to run for? May to November 2012 Who is funding the study? Italian MS Society [Fondazione Italiana Sclerosi Multipla (FISM)] Who is the main contact? Dr Alessandra Solari solari@istituto-besta.it