Experience of an information aid for newly diagnosed multiple sclerosis patients: a qualitative study on the SIMS‐Trial

• Published in: Health expectations : an international journal of public participation in health care and health policy 2014-02, Vol.17 (1), p.36-48
• Main Authors: Borreani, Claudia, Giordano, Andrea, Falautano, Monica, Lugaresi, Alessandra, Martinelli, Vittorio, Granella, Franco, Tortorella, Carla, Plasmati, Imma, Radaelli, Marta, Farina, Deborah, Dalla Bella, Eleonora, Bianchi, Elisabetta, Acquarone, Nicola, Miccinesi, Guido, Solari, Alessandra
• Format: Article
• Language: English
• Subjects: Adult; Autoimmune diseases; Caregiving; Caring; Clinical decision making; Clinical Trials as Topic; complex intervention; diagnosis communication; Doctors; Female; Humans; Interviews; Male; Medical diagnosis; Middle Aged; Multiple sclerosis; Multiple Sclerosis - therapy; Navigation; Neurologists; Newly diagnosed; Original Research Papers; Patient Education as Topic - methods; Patients; Patients - psychology; Physicians; Physicians - psychology; Qualitative Research; qualitative study; shared decision making; Time Factors
• ISSN: 1369-6513; 1369-7625
• DOI: 10.1111/j.1369-7625.2011.00736.x

Background  The SIMS‐Trial (ISRCTN81072971) proved the effectiveness, in terms of patient’s knowledge and care satisfaction, of an add‐on information aid (personal interview with a physician using a navigable CD and take‐home booklet) in 120 newly diagnosed patients with multiple sclerosis (MS) from five Italian centres. Objective  To scrutinize the experience of SIMS‐Trial participants in order to gain better understanding of the effectiveness of the information aid and its components. Design  We performed (i) nine individual semi‐structured interviews with a purposeful sample of SIMS‐Trial patients who received the information aid, (ii) focus group meeting (FGM) with the physicians who conducted the personal interview, and (iii) FGM with patients’ caring neurologists. Results  Patients’ experience with the information aid was positive as it enhanced their understanding of their disease, being viewed as a guided tour of their medical condition. The physicians who conducted the personal interviews were also positive in their overall evaluation but noted an initial difficulty in using the CD. The caring neurologists had limited direct experience of the aid, and their views were confined to utility of the information aid in general. All participants considered the combination of personal interview, CD navigation and take‐home booklet essential, but urged a more flexible scheduling of the personal interview. It also emerged that some content required revision and that the aid was unsuitable for patients with primary progressive MS. Conclusions  The results of the study further support the value of the aid and also provide important indications for improving it and refining indications for use.