David Dodick1, Lars Edvinsson2, Tomohiko Makino3, Wolfgang Grisold4, Fumihiko Sakai5, Rigmor Jensen6, Alan Balch7, Elena Ruiz de la Torre8, Deborah Henscheid-Lorenz9, Audrey Craven10, Messoud Ashina6. 1. 1 Mayo Clinic, Phoenix, AZ, USA. 2. 2 University Hospital of Lund, Lund, Sweden. 3. 3 World Health Organization, Regional Office for the Western Pacific, Manila, Philippines. 4. 4 World Federation of Neurology, London, UK. 5. 5 Saitama International Headache Center, Saitama, Japan. 6. 6 Danish Headache Center, University of Copenhagen, Rigshopitalet, Glostrup, Denmark. 7. 7 Patient Advocate Foundation, Hampton, VA, USA. 8. 8 European Headache Alliance, Brussels, Belgium. 9. 9 American Migraine Foundation, Mount Royal, NJ, USA. 10. 10 Migraine Association of Ireland, Dublin, Ireland.
Abstract
BACKGROUND: Headache disorders comprise the three most prevalent medical disorders globally and contribute almost 20% to the total burden of neurologic illness. Although the experience of a recurrent headache disorder tends to be highly individualized, patient preferences tend to be a low priority in guidelines for the management of patients with headache. METHODS: In September 2017, the first Global Patient Advocacy Summit was convened, bringing together patients, patient advocates, patient advocacy organizations, healthcare professionals, pharmaceutical manufacturers, scientists, and regulatory agencies to advance issues of importance to patients affected by headache worldwide. RESULTS: Presentations and discussion covered multiple issues, such as improving access to appropriate medical care; incorporating the insights of independent patient advocates and advocacy organizations; leveraging the insights, experience and influence of leading health and neurological organizations; and raising awareness of the role of regulatory agencies in disease advocacy. Attendees agreed that it is important to understand and promote the global, regional, and local interests of people with headache disorders, as well as challenge the pervasive stigma associated with headache. They also agreed that those with severe, recurrent, or disabling headache disorders should have reliable access to competent medical care; healthcare professionals should have access to adequate training in Headache Medicine; global benchmarks should be established for accurate diagnosis and the use of evidence-based treatments in patients with headache; and that information is needed about consultation, diagnosis, and treatment of headache, particularly in regard to patient preferences. CONCLUSION: Based on the group's consensus around these issues, a series of statements was developed, and they are collectively presented herein as the Vancouver Declaration on Global Headache Patient Advocacy 2018.
BACKGROUND: Headache disorders comprise the three most prevalent medical disorders globally and contribute almost 20% to the total burden of neurologic illness. Although the experience of a recurrent headache disorder tends to be highly individualized, patient preferences tend to be a low priority in guidelines for the management of patients with headache. METHODS: In September 2017, the first Global Patient Advocacy Summit was convened, bringing together patients, patient advocates, patient advocacy organizations, healthcare professionals, pharmaceutical manufacturers, scientists, and regulatory agencies to advance issues of importance to patients affected by headache worldwide. RESULTS: Presentations and discussion covered multiple issues, such as improving access to appropriate medical care; incorporating the insights of independent patient advocates and advocacy organizations; leveraging the insights, experience and influence of leading health and neurological organizations; and raising awareness of the role of regulatory agencies in disease advocacy. Attendees agreed that it is important to understand and promote the global, regional, and local interests of people with headache disorders, as well as challenge the pervasive stigma associated with headache. They also agreed that those with severe, recurrent, or disabling headache disorders should have reliable access to competent medical care; healthcare professionals should have access to adequate training in Headache Medicine; global benchmarks should be established for accurate diagnosis and the use of evidence-based treatments in patients with headache; and that information is needed about consultation, diagnosis, and treatment of headache, particularly in regard to patient preferences. CONCLUSION: Based on the group's consensus around these issues, a series of statements was developed, and they are collectively presented herein as the Vancouver Declaration on Global Headache Patient Advocacy 2018.
Entities:
Keywords:
Headache patient advocacy; global headache; headache disorders
Authors: Anne Thiele; Sebastian Strauß; Anselm Angermaier; Lara Klehr; Luise Bartsch; Martin Kronenbuerger; Sein Schmidt; Robert Fleischmann Journal: Brain Sci Date: 2021-06-24