Contributions
Abstract: EP1838
Type: ePoster
Abstract Category: Therapy - symptomatic - 34 Quality of life
Background: The MS in the 21st Century initiative, formed in 2011 and led by a Steering Group (SG) of international multiple sclerosis (MS) specialists and patient advocates, focusses on developing programmes to improve the education of and communication between healthcare professionals (HCPs) and people with MS (PwMS). In 2016, the SG conducted a mapping exercise to capture the existing educational offerings for PwMS in Europe and Canada (Phase 1). Findings from Phase 1 indicated patient resources varied by topic, format and country.
Objective: Phase 2 of the research was designed to compare the number and type of patient resources in the field of MS to similar offerings for patients in the field of HIV, which the SG identified as a comparator chronic disease.
Method: The Phase 1 methodology was repeated for Phase 2 in Europe and Canada. Desktop research was undertaken using Google search engine. Search terms were based on a pre-determined parameter list from Phase 1 and modified for HIV. Research was conducted across multiple stakeholders including patient associations, pharmaceutical companies and public healthcare/government services. Resources were categorised by topic and format including, websites, information sheets and social media. This research model will be later extended to additional geographies.
Results: A total of 454 stakeholders were mapped in 21 countries resulting in the identification of 8,097 resources for HIV; compared to 1,867 resources identified in Phase 1 for MS. Resource formats identified were similar for both diseases: websites were the most common resource format for HIV and MS but represented a higher proportion of overall resources for HIV (74.3%) compared with MS (46.8%). Fewer printed materials were found for HIV (7.8%) than for MS (19.5%). The most frequently identified topics for both HIV and MS included general disease information (treatment information, general guides and lifestyle advice), accounting for 61.8% and 60.1% of resources. There were more resources that dealt with effective patient-HCP communication for HIV (3.1%) compared to MS (0.3%). The origin of the patient information was similar for both: the majority of resources were provided by patient associations/advocacy groups (HIV 69.1% and MS 63.2%).
Conclusion: This research demonstrated that there is a large offering of patient educational resources for HIV in Europe and Canada and when compared with the field of MS, suggests PwMS may be underserviced.
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 Marrow, Sven Schippling, Christoph Thalheim, Heidi Thompson, Patrick Vermersch, Karen Aston, Birgit Bauer, Christy Demory, Jana Hlavacova, Jocelyne Nouvet-Gire, Maria Paz Giambastiani, George Pepper, Maiga Pontaga, Chrystal Rogalski, Emma Rogan, Jane Shanahan and Pieter van Galen
Abstract: EP1838
Type: ePoster
Abstract Category: Therapy - symptomatic - 34 Quality of life
Background: The MS in the 21st Century initiative, formed in 2011 and led by a Steering Group (SG) of international multiple sclerosis (MS) specialists and patient advocates, focusses on developing programmes to improve the education of and communication between healthcare professionals (HCPs) and people with MS (PwMS). In 2016, the SG conducted a mapping exercise to capture the existing educational offerings for PwMS in Europe and Canada (Phase 1). Findings from Phase 1 indicated patient resources varied by topic, format and country.
Objective: Phase 2 of the research was designed to compare the number and type of patient resources in the field of MS to similar offerings for patients in the field of HIV, which the SG identified as a comparator chronic disease.
Method: The Phase 1 methodology was repeated for Phase 2 in Europe and Canada. Desktop research was undertaken using Google search engine. Search terms were based on a pre-determined parameter list from Phase 1 and modified for HIV. Research was conducted across multiple stakeholders including patient associations, pharmaceutical companies and public healthcare/government services. Resources were categorised by topic and format including, websites, information sheets and social media. This research model will be later extended to additional geographies.
Results: A total of 454 stakeholders were mapped in 21 countries resulting in the identification of 8,097 resources for HIV; compared to 1,867 resources identified in Phase 1 for MS. Resource formats identified were similar for both diseases: websites were the most common resource format for HIV and MS but represented a higher proportion of overall resources for HIV (74.3%) compared with MS (46.8%). Fewer printed materials were found for HIV (7.8%) than for MS (19.5%). The most frequently identified topics for both HIV and MS included general disease information (treatment information, general guides and lifestyle advice), accounting for 61.8% and 60.1% of resources. There were more resources that dealt with effective patient-HCP communication for HIV (3.1%) compared to MS (0.3%). The origin of the patient information was similar for both: the majority of resources were provided by patient associations/advocacy groups (HIV 69.1% and MS 63.2%).
Conclusion: This research demonstrated that there is a large offering of patient educational resources for HIV in Europe and Canada and when compared with the field of MS, suggests PwMS may be underserviced.
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 Marrow, Sven Schippling, Christoph Thalheim, Heidi Thompson, Patrick Vermersch, Karen Aston, Birgit Bauer, Christy Demory, Jana Hlavacova, Jocelyne Nouvet-Gire, Maria Paz Giambastiani, George Pepper, Maiga Pontaga, Chrystal Rogalski, Emma Rogan, Jane Shanahan and Pieter van Galen