Contributions
Abstract: P814
Type: Poster
Abstract Category: Therapy - symptomatic - 34 Quality of life
Background: The MS in the 21st Century initiative is led by a steering group (SG) of international multiple sclerosis (MS) specialists and patient advocates with a current focus of improving education and communication between healthcare professionals (HCPs) and people with MS.
Objective: To compare the priorities of the MS clinical community and patients on MS management and care. Particular emphasis was on patient support at diagnosis, treatment decisions, and communicating the concept of disease progression.
Method: An electronic survey was developed to gain insight into HCPs' opinions on unmet needs in MS management. This was conducted at two international neurology congresses (2016 and 2017). An equivalent patient survey was developed and conducted at a patient meeting in 2017. Multiple answers were solicited in response to 10 questions.
Results: A total of 101 HCPs and 54 MS patients completed the survey, with 98.4% and 93.6% reporting at least one communication challenge at diagnosis, respectively. The most frequently reported challenge for HCPs was lack of time with the patient (26.6%). Patients reported a lack of time (14.5%) but also difficulty understanding their treatment options (20.2%) and disease status (19.4%). Whilst 60.0% of patients felt they guided disease progression discussions, only 15.9% of HCPs reported that this was the case. Both HCPs and patients agreed the most important treatment consideration for patients was that it slows disease progression (26.2% and 31.5%, respectively). Although 31.8% of HCPs thought patients preferred to focus more on the benefits than risks of treatments, only 9.3% of patients agreed; 68.5% of patients reported they have equal interest in treatment benefits and risks. HCPs felt the biggest barrier to effective communication was in helping patients to understand complicated information (31.3%). Patients also expressed difficulty in understanding MS (19.4%) but felt HCPs' misunderstanding of patient priorities (21.8%) was a barrier.
Conclusion: HCPs and patients reported a lack of time and resources, particularly at diagnosis; however, there were distinct variations in priorities and perceptions surrounding treatment decisions. Both groups reported a number of barriers to effective communication, which supports the need for joint education related to communication.
Disclosure: The MS in the 21st Century initiative is financially supported solely by Merck KGaA, Darmstadt, Germany. Secretariat support was provided by Cello Health Communications, with editorial input from Helen Hammond from Cello Health Communications. Medical writing assistance was provided by and was funded by Merck KGaA, Darmstadt, Germany.
Peter Rieckmann receives honoraria for lectures from: Almirall, Apple Healthcare, Baxter, Bayer, Biogen Idec, Boehringer-Ingelheim, Cerner, Daiichi Sankyo, Genpharm, Genzyme, Medtronic, Merck Serono, Novartis, Pfizer, Roche, Sanofi-Aventis, Siemens AG and Teva. He receives research grants from: Bayer, EMD Serono, Novartis, Teva, MS Society of Canada, Canadian Institute of Health Research, Hertie Foundation, Oberfranken-Stiftung and German Neurology Foundation. He is on an advisory board or steering committee for: Abbvie, Bayer, Biogen Idec, Novartis, Merck Serono, Teva, German Multiple Sclerosis Society and Canada Drug Review.
Elisabetta Verdun Di Cantogno is an employee of Merck KGaA.
MS in the 21st Century Steering Group members: Peter Rieckmann, Diego Centonze, Irina Elovaara, Gavin Giovannoni, Celia Oreja-Guevara, Eva Havrdová, Jurg Kesselring, Gisela Kobelt, Dawn Langdon, Sarah Morrow, Sven Schippling, Christoph Thalheim, Heidi Thompson, Patrick Vermersch, Karen Aston, Birgit Bauer, Christy Demory, Jana Hlaváčová, Jocelyne Nouvet-Gire, Maria Paz Giambastiani, George Pepper, Maija Pontaga, Chrystal Rogalski, Emma Rogan, Jane Shanahan and Pieter van Galen.
Abstract: P814
Type: Poster
Abstract Category: Therapy - symptomatic - 34 Quality of life
Background: The MS in the 21st Century initiative is led by a steering group (SG) of international multiple sclerosis (MS) specialists and patient advocates with a current focus of improving education and communication between healthcare professionals (HCPs) and people with MS.
Objective: To compare the priorities of the MS clinical community and patients on MS management and care. Particular emphasis was on patient support at diagnosis, treatment decisions, and communicating the concept of disease progression.
Method: An electronic survey was developed to gain insight into HCPs' opinions on unmet needs in MS management. This was conducted at two international neurology congresses (2016 and 2017). An equivalent patient survey was developed and conducted at a patient meeting in 2017. Multiple answers were solicited in response to 10 questions.
Results: A total of 101 HCPs and 54 MS patients completed the survey, with 98.4% and 93.6% reporting at least one communication challenge at diagnosis, respectively. The most frequently reported challenge for HCPs was lack of time with the patient (26.6%). Patients reported a lack of time (14.5%) but also difficulty understanding their treatment options (20.2%) and disease status (19.4%). Whilst 60.0% of patients felt they guided disease progression discussions, only 15.9% of HCPs reported that this was the case. Both HCPs and patients agreed the most important treatment consideration for patients was that it slows disease progression (26.2% and 31.5%, respectively). Although 31.8% of HCPs thought patients preferred to focus more on the benefits than risks of treatments, only 9.3% of patients agreed; 68.5% of patients reported they have equal interest in treatment benefits and risks. HCPs felt the biggest barrier to effective communication was in helping patients to understand complicated information (31.3%). Patients also expressed difficulty in understanding MS (19.4%) but felt HCPs' misunderstanding of patient priorities (21.8%) was a barrier.
Conclusion: HCPs and patients reported a lack of time and resources, particularly at diagnosis; however, there were distinct variations in priorities and perceptions surrounding treatment decisions. Both groups reported a number of barriers to effective communication, which supports the need for joint education related to communication.
Disclosure: The MS in the 21st Century initiative is financially supported solely by Merck KGaA, Darmstadt, Germany. Secretariat support was provided by Cello Health Communications, with editorial input from Helen Hammond from Cello Health Communications. Medical writing assistance was provided by and was funded by Merck KGaA, Darmstadt, Germany.
Peter Rieckmann receives honoraria for lectures from: Almirall, Apple Healthcare, Baxter, Bayer, Biogen Idec, Boehringer-Ingelheim, Cerner, Daiichi Sankyo, Genpharm, Genzyme, Medtronic, Merck Serono, Novartis, Pfizer, Roche, Sanofi-Aventis, Siemens AG and Teva. He receives research grants from: Bayer, EMD Serono, Novartis, Teva, MS Society of Canada, Canadian Institute of Health Research, Hertie Foundation, Oberfranken-Stiftung and German Neurology Foundation. He is on an advisory board or steering committee for: Abbvie, Bayer, Biogen Idec, Novartis, Merck Serono, Teva, German Multiple Sclerosis Society and Canada Drug Review.
Elisabetta Verdun Di Cantogno is an employee of Merck KGaA.
MS in the 21st Century Steering Group members: Peter Rieckmann, Diego Centonze, Irina Elovaara, Gavin Giovannoni, Celia Oreja-Guevara, Eva Havrdová, Jurg Kesselring, Gisela Kobelt, Dawn Langdon, Sarah Morrow, Sven Schippling, Christoph Thalheim, Heidi Thompson, Patrick Vermersch, Karen Aston, Birgit Bauer, Christy Demory, Jana Hlaváčová, Jocelyne Nouvet-Gire, Maria Paz Giambastiani, George Pepper, Maija Pontaga, Chrystal Rogalski, Emma Rogan, Jane Shanahan and Pieter van Galen.