Abstract Details

Title Disparities in Access to ALS/MND Care: an International Survey

Topic Global Health and Neuroepidemiology

Presentation(s) Global Health Posters (7:00 AM-5:00 PM)

Poster/Presentation
Number 001

Background There is a definite need to obtain comparative information from representative countries across the globe providing different levels and intensity of care for patients with ALS/MND, as well as basic science and clinical research support. Key considerations influencing the development of optimal ALS/MND public policy include economic, cultural and religious factors unique to each country.

Objective The burden of ALS/MND across the globe is expected to increase along with an aging population. Access to high quality care varies greatly as a function of a patient's medical insurance, socioeconomic status and number of trained neurologists. Major disparities are expected to exist among WHO-designated high-, middle-, and low-income countries. This survey was designed to obtain information from twenty-one representative countries across the globe.

Design/Methods More than fifty ALS/MND experts from twenty-one countries and six continents provided information related to governmental and private agencies support of patient care and research, access to assistive technologies and genetic testing, availability of multidisciplinary care, as well as hospice and palliative care. Information regarding the legal status and availability of advance directives, palliative sedation and assisted death was also obtained.

Results

Major disparities representing multiple areas of public policy impacting ALS/MND care and research were noted. Great variations were present among the twenty-one countries surveyed. Several resource-limited countries had no public awareness of ALS/MND and extremely limited access to patient care. Economic, cultural and religious factors appear to be critical elements which determine access and availability of ALS/MND care and research.

Conclusions This international survey of twenty-one countries across six continents demonstrated significant disparities regarding access and availability of ALS/MND care and research. These results were often a reflection of whether a country was WHO-designated high-, middle-, or low-income. Major opportunities exist to enhance international collaboration to develop optimal approaches to ALS/MND care and research.

Authors/Disclosures
Jerome E. Kurent, MD, MPH, FAAN (Medical University of South Carolina) PRESENTER	Dr. Kurent has received personal compensation in the range of $500-$4,999 for serving as an Expert Witness for Young Clement Rivers, LLP.
David Oliver (University of Kent)	David Oliver has received publishing royalties from a publication relating to health care. David Oliver has received publishing royalties from a publication relating to health care. David Oliver has received publishing royalties from a publication relating to health care.
	No disclosure on file