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Background and Purpose: Patient and public involvement in clinical practice guideline development is recommended to increase guideline trustworthiness and relevance. The aim was to engage multiple sclerosis (MS) patients and caregivers in the definition of the key questions to be answered in the European Academy of Neurology guideline on palliative care of people with severe MS., Methods: A mixed methods approach was used: an international online survey launched by the national MS societies of eight countries, after pilot testing/debriefing on 20 MS patients and 18 caregivers, focus group meetings of Italian and German MS patients and caregivers., Results: Of 1199 participants, 951 (79%) completed the whole online survey and 934 from seven countries were analysed: 751 (80%) were MS patients (74% women, mean age 46.1) and 183 (20%) were caregivers (36% spouses/partners, 72% women, mean age 47.4). Participants agreed/strongly agreed on inclusion of the nine pre-specified topics (from 89% for 'advance care planning' to 98% for 'multidisciplinary rehabilitation'), and <5% replied 'I prefer not to answer' to any topic. There were 569 free comments: 182 (32%) on the pre-specified topics, 227 (40%) on additional topics (16 guideline-pertinent) and 160 (28%) on outcomes. Five focus group meetings (three of MS patients, two of caregivers, and overall 35 participants) corroborated the survey findings. In addition, they allowed an explanation of the guideline production process and the exploration of patient-important outcomes and of taxing issues., Conclusions: Multiple sclerosis patient and caregiver involvement was resource and time intensive, but rewarding. It was the key for the formulation of the 10 guideline questions and for the identification of patient-important outcomes., (© 2018 EAN.)

Background: Adequate disease and treatment-related risk knowledge of people with Multiple Sclerosis (pwMS) is a prerequisite for informed choices in medical encounters. Previous work showed that MS risk knowledge is low among pwMS and role preferences are different in Italy and Germany., Objective: We investigated the level of risk knowledge and role preferences in 8 countries and assessed putative variables associated with risk knowledge., Methods: An online-survey was performed based on the Risk knowledge questionnaire for people with relapsing-remitting MS (RIKNO 2.0), the electronic Control Preference Scale (eCPS), and other patient questionnaires. Inclusion criteria of participants were: (1) age ≥18 years, (2) a diagnosis of relapsing-remitting MS (RRMS), (3) being in a decision making process for a disease modifying drug., Results: Of 1939 participants from Germany, Italy, the Netherlands, Serbia, Spain and Turkey, 986 (51%) (mean age 38.6 years [range 18-67], 77% women, 7.8 years of disease duration) completed the RIKNO 2.0, with a mean of 41% correct answers. There were less than 50 participants in the UK and Estonia and data were not analysed. Risk knowledge differed across countries (p < 0.001). Variables significantly associated with higher risk knowledge were higher education (p < 0.001), previous experience with disease modifying drugs (p = 0.001), correct answer to a medical data interpretation question (p < 0.001), while higher fear for wheelchair dependency was negatively associated to risk knowledge (p = 0.001)., Conclusion: MS risk knowledge was overall low and differed across participating countries. These data indicate that information is an unmet need of most pwMS., Competing Interests: I have read the journal's policy and the authors of this manuscript have the following competing interests: K. Liethmann was partly financed by a grant on adherence factors in MS (ADEPT) by Genzyme Sanofi-Aventis. J. Drulovic has received honoraria as speaker and for participation in Advisory Boards from Merck Serono, Teva, Bayer Schering, Sanofi Genzyme, and Medis. J. Sastre-Garriga has received compensation for participating on Advisory Boards, speaking honoraria and travel expenses for scientific meetings, consulting services or research support from Celgene, Novartis, Biogen, Teva, Merck, Almirall, and Genzyme. I. Galea has received funding for travel and conference attendance from Teva and research funding from Merck Serono; he has served as a scientific advisor to Evgen. A. Solari has been a board member of Merck Serono and Novartis. She has received speaker honoraria from Almirall, Excemed, Genzyme, Merck Serono, and Teva. C. Heesen has received speaker honoraria and travel grants from Biogen, Genzyme, Sanofi Aventis, Merck, Novartis and Roche. All other authors declare that they have no competing interests. This does not alter our adherence to PLOS ONE policies on sharing data and materials.