Abstract

The quality of medical care for patients with amyotrophic lateral sclerosis (ALS) in the Russian Federation is analyzed taking into account the cooperation of patients. Two hundred and fifty-one patients with ALS were observed. Ninety-nine patients, including 16 who were followed up, were examined. Other patients (n=152) were consulted indirectly including 28 followed up. It has been shown that 79.8% of the patients are characterized by the low level of cooperation with neurologists regardless of the quality of medical care; 8.3% of patients are managed in facilities (or by physicians), which don't use the International standard of ALS management. Only 11.9% of patients receive medical care in accordance with this standard and in these cases, the high level of cooperation of the patients with medical services was recorded. A dual system that combines the services provided by medical insurance, private treatment facilities, charity organizations, structures of medical/social care with different levels of availability and methods of consumer-provider interactions is the most effective.

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