Participation in medical decision-making: Attitudes of Italians with multiple sclerosis Andrea Giordano a , Katia Mattarozzi b , Eugenio Pucci c , Maurizio Leone d , Federica Casini b , Laura Collimedaglia e , Alessandra Solari a, ⁎ a Neuroepidemiology Unit, Foundation IRCCS Neurological Institute C. Besta, Via Celoria 11, 20133 Milan, Italy b Department of Psychology, University of Bologna, Bologna, Italy c Neurology Department, Ospedale di Macerata, Macerata, Italy d Neurology Clinic, Ospedale Maggiore della Carità and Università del Piemonte Orientale, Novara, Italy e Department of Neurology, Università del Piemonte Orientale, Novara, Italy abstract article info Article history: Received 11 June 2008 Accepted 23 July 2008 Available online 10 September 2008 Keywords: Patient participation Decision-making Multiple sclerosis Patient–physician communication Translation–adaptation Background: Patient involvement in decisions regarding their care has been advocated, but preferences have not been adequately canvassed, particularly in people with multiple sclerosis (MS). Objectives: To cross-culturally adapt and validate the Italian version of the Control Preference Scale (CPS) subsequently used to assess preferences of people with MS. Methods: Translation–adaptation into Italian of CPS from the original Canadian English followed by administration in 140 people with MS from five Italian centers (with re-administration in 35) and semi- structured interview. Results: Cross-cultural adaptation of CPS was successful. The 140 people with MS, who varied in clinical and general characteristics, considered the CPS clear and acceptable. Test–retest reliability was moderate (weighted Kappa 0.65; p b 0.001). A collaborative role was preferred (61%), followed by passive (33%) and active (6%) roles. Education (odds ratio [OR] 2.43, 95% confidence limits [CI] 1.05–5.66) and length of follow- up at referral center (OR 0.36, 95% CI 0.14–0.92) were associated with choice of an active/collaborative role in the logistic model. Conclusions: The Italian CPS was well accepted by our MS population. Our data indicate that a high proportion of Italians with MS prefer a more passive role and this should be considered during the clinical encounter. © 2008 Elsevier B.V. All rights reserved. 1. Introduction Compared to usual care, shared decision-making can enhance patient knowledge, satisfaction, empowerment, compliance, and even health-related outcomes (including long-term outcomes); it can also improve the patient–clinician relationship, clinician's satisfaction, and maximize the effectiveness of care [1–4]. Multiple sclerosis (MS) is the most common neurological disease affecting the functioning and independence of young adults. There is no cure, however over the last 20 years many sufferers have been given “disease-modifying” drugs which reduce the number of exacerbations and may influence long-term prognosis [5]. Disease- modifying drugs are typically prescribed long-term to recently diagnosed persons with no or mild impairment. Beta interferon, the most frequently prescribed drug, is expensive (annual direct treat- ment costs per patient of about € 10,000 [$ 16,000] and can cause side effects that impact everyday life, resulting in poor treatment compliance and early dropout. It is important to assess the individual patient's attitude to such a long-term treatment program, following provision of full information regarding the benefits and risks associated with the treatment and its effects on lifestyle. It is also important to involve the patient in decisions about such treatment, provided it is desired. Although few studies have assessed patient preferences for information and involvement in decision-making in general [6] and in MS in particular [7], it appears that most people with MS want a more effective dialog with their physicians and many would like a more active role in the management of their health, although they vary in the extent and type of participation they prefer [8–10]. Furthermore, following the introduction of diagnostic criteria that make diagnosis possible earlier [11], accompanied by early introduc- tion of “disease-modifying” drugs [12], it was expected that informa- tion provision to patients would improve; yet recent studies have shown that people with MS are not well informed about their disease and refer to poor communication with their caregivers [7,13–15]. The aim of the present study was to assess the preferences of Italians with MS regarding participation in decisions about their treatment using the new Italian version of the Control Preference Scale (CPS) which we translated and adapted from the original version in Canadian English [16]. Journal of the Neurological Sciences 275 (2008) 86–91 ⁎ Corresponding author. E-mail address: solari@istituto-besta.it (A. Solari). 0022-510X/$ – see front matter © 2008 Elsevier B.V. All rights reserved. doi:10.1016/j.jns.2008.07.026 Contents lists available at ScienceDirect Journal of the Neurological Sciences journal homepage: www.elsevier.com/locate/jns