Contributions
Abstract: P1272
Type: Poster Sessions
Abstract Category: Therapy - Symptomatic treatment
Background: Patient and public involvement in clinical practice guideline development is recommended to increase guideline trustworthiness and relevance.
Objective: To engage multiple sclerosis (MS) patients and caregivers in definition of the key questions to be answered in the EAN Guideline on Palliative Care of People with Severe MS.
Methods: A mixed methods approach was used: 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 (FGMs) 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 analyzed: 751 (80%) were MS patients (74% women, mean age 46.1) and 183 (20%) 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 FGMs (three of MS patients, two of caregivers, overall 35 participants) corroborated the survey findings. In addition, they allowed the explanation of the guideline production process, the exploration of patient-important outcomes and of taxing issues.
Conclusions: MS patient and caregiver involvement was resource and time intensive, but rewarding. It was key for the formulation of the 10 guideline questions, and for the identification of patient-important outcomes.
Disclosure: Dr. Drulovic serves on scientific advisory boards for Bayer Schering Pharma, Merck Serono, TEVA, Sanofi Genzyme and received speaker honoraria from Merck Serono, Teva, Bayer Schering, Sanofi Genzyme, Medis; and has also received research grant support from the Ministry of Education and Science, Republic of Serbia (project no. 175031). She is the principal investigator in clinical trials for Merck Serono, Teva, Biogen Idec, Roche, Sanofi Genzyme, Celgene, outside the submitted work. Dr. Pekmezovic received speaker honoraria from Teva, Roche, Medis, Gedeon Richter; and has also received research grant support from the Ministry of Education, Science and Technological Development of the Republic of Serbia (projects no. 175087 and 175090), outside the submitted work. Dr. Voltz reports personal fees from Prostrakan, Pfizer, MSD Sharp&Dome, AOK, grants from TEVA/EffenDys, Otsuka, DMSG/Hertie Stiftung, outside the submitted work. Dr. Solari reports grants from Italian MS Foundation (FISM), European Academy of Neurology, during the conduct of the study; she serves as board member for Merck Serono, Novartis; she received personal fees from Almirall, Excemed, Genzyme, Merck Serono, Teva, outside the submitted work. All the other authors have nothing to declare.
Abstract: P1272
Type: Poster Sessions
Abstract Category: Therapy - Symptomatic treatment
Background: Patient and public involvement in clinical practice guideline development is recommended to increase guideline trustworthiness and relevance.
Objective: To engage multiple sclerosis (MS) patients and caregivers in definition of the key questions to be answered in the EAN Guideline on Palliative Care of People with Severe MS.
Methods: A mixed methods approach was used: 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 (FGMs) 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 analyzed: 751 (80%) were MS patients (74% women, mean age 46.1) and 183 (20%) 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 FGMs (three of MS patients, two of caregivers, overall 35 participants) corroborated the survey findings. In addition, they allowed the explanation of the guideline production process, the exploration of patient-important outcomes and of taxing issues.
Conclusions: MS patient and caregiver involvement was resource and time intensive, but rewarding. It was key for the formulation of the 10 guideline questions, and for the identification of patient-important outcomes.
Disclosure: Dr. Drulovic serves on scientific advisory boards for Bayer Schering Pharma, Merck Serono, TEVA, Sanofi Genzyme and received speaker honoraria from Merck Serono, Teva, Bayer Schering, Sanofi Genzyme, Medis; and has also received research grant support from the Ministry of Education and Science, Republic of Serbia (project no. 175031). She is the principal investigator in clinical trials for Merck Serono, Teva, Biogen Idec, Roche, Sanofi Genzyme, Celgene, outside the submitted work. Dr. Pekmezovic received speaker honoraria from Teva, Roche, Medis, Gedeon Richter; and has also received research grant support from the Ministry of Education, Science and Technological Development of the Republic of Serbia (projects no. 175087 and 175090), outside the submitted work. Dr. Voltz reports personal fees from Prostrakan, Pfizer, MSD Sharp&Dome, AOK, grants from TEVA/EffenDys, Otsuka, DMSG/Hertie Stiftung, outside the submitted work. Dr. Solari reports grants from Italian MS Foundation (FISM), European Academy of Neurology, during the conduct of the study; she serves as board member for Merck Serono, Novartis; she received personal fees from Almirall, Excemed, Genzyme, Merck Serono, Teva, outside the submitted work. All the other authors have nothing to declare.