The quality of medical care and cooperation of patients with amyotrophic lateral sclerosis in the Russian Federation

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.

Analysing the influencing factors on caregivers’ burden among amyotrophic lateral sclerosis patients in China: a cross-sectional study based on data mining

“… 41 Family care is the main strategy for Chinese caregivers to look after ALS patients, and older women and spouses still play an important role in providing family care, while in some other countries, hospital care, nursing home care and community care were made full use of to help alleviate the families’ burden. 42 43 The lack of professional caring experience, staff and facilities could affect the efficiency of caring and thus lead to an increasing caregiver burden. Although China has developed rapidly in recent years, there have been obvious differences in medical development and medical investments between eastern and western areas.…”

“… 10 51 Physical, psychological, emotional and social support are potential effective non-medication interventions to help relieve caregiver burden. 42 52–54 Healthcare system should pay more attention to the health status of both the patients and their caregivers proactively. Hopefully, positive and effective strategies can be developed as soon as possible to improve the situation.…”

“…In some well-developed regions such as Hong Kong, the promotion of multidisciplinary teams provides effective support for the disease, which encourages patients and families of ALS in a highly positive manner 41. Family care is the main strategy for Chinese caregivers to look after ALS patients, and older women and spouses still play an important role in providing family care, while in some other countries, hospital care, nursing home care and community care were made full use of to help alleviate the families’ burden 42 43. The lack of professional caring experience, staff and facilities could affect the efficiency of caring and thus lead to an increasing caregiver burden.…”

“…Regional ALS centres participated by doctors, nurses, psychologists, rehabilitation trainers, social workers, nutritionists, communities, speech trainers, families and researchers are necessary for healthcare system to provide complete and efficient support 10 51. Physical, psychological, emotional and social support are potential effective non-medication interventions to help relieve caregiver burden 42 52–54. Healthcare system should pay more attention to the health status of both the patients and their caregivers proactively.…”

Epidemiology of Amyotrophic Lateral Sclerosis

“…Timely diagnosis of ALS can reduce the rate of progression of the disease and improve the quality of life of patients at the initial stage. Due to the high mortality rate and the lack of specific therapy, ALS remains an urgent problem of modern neurology [7]. The study of the prevalence and incidence of ALS in different regions of Russia will help us to understand the cause of this disorder and develop a more accurate framework for identifying and combatting the disease .…”