Medico-social and Demographic Characteristics of Quality of Life in Patients with Multiple Sclerosis

The dissertation is devoted to a comprehensive study of the quality of life of patients with multiple sclerosis from the perspectives of medico-social and economic science. The research covers the epidemiological aspects of the disease, its burden on the population, and the factors determining the quality of life of patients. The work employs methods of computer epidemiological modeling, WHO questionnaires (WHOQOL-BREF) and EuroQoL-5D for the assessment of the condition of patients and the economic costs associated with the disease.

The author analyzes the direct, indirect, and intangible costs of multiple sclerosis from the perspective of society, studies the medico-social characteristics of patients, and develops practical proposals for optimizing care for patients. The results of the work can be used in the formation of rehabilitation and social programs, as well as in the planning of targeted medico-social measures for patients with chronic neurological diseases.

Relevance of the Study. Multiple Sclerosis (MS) is a chronic demyelinating disease of the nervous system that primarily affects individuals of young and middle age (<20-40 years), proceeding in a wave-like or progressive manner, possessing relatively high lethality, yet in virtually all cases leading to impairment of the functioning of various organs and systems, including a significant reduction in the patient's quality of life.

MS occupies one of the leading positions among neurological diseases leading to disability in YOUNG and middle age (Gusev E.I. et al., 1997; Deen A.S. et al., 1998; Lupkiy M.L. et al., 2002; Vermeersch P., Marissa J.P., 2001). Special studies conducted in European countries have shown significant differences in the prevalence of this disease not only between countries but also within regions of the same country (Rosai. 2001; Pugliaiti et al., 2002, 2005).

Despite the large number of studies on the epidemiology of MS abroad, estimates of the number of patients in the Russian Federation are based on expert opinions. Assessment of epidemiological indicators of MS remains a difficult task to this day due to the variability of the studied populations (number, age structure, ethnic composition, geographic location, etc.); difficulties in early identification of MS cases; differences in the methods of diagnosis verification due to variations in the availability of necessary equipment, the number of specialists, etc.; the use of different diagnostic criteria for identifying new MS cases (G. Kobelt, M. Pugliani, 2005).

Being a chronic disabling disease, MS substantially affects the quality of life of patients (Totolyan N.A., 1909; Novik A.A. et al., 2001; Milter D.M., 2002; Shawaryn M.A. et al., 2002). Moreover, the patient's final perception of their well-being is influenced not only by the disease itself and its physical consequences but also by the psychological state of the patient, their social environment, and many other factors. Although MS is not among the leading causes of premature death, its overall burden, due to the early onset of the disease and the progressive disabling course, is sufficiently great to attract the attention of specialists in public health and social medicine.

One of the integral indicators that allows assessing the impact of the disease on the health of the population is the burden of disease. This indicator combines the loss of life years due to premature death and the loss of healthy life years due to disability resulting from the development of the disease. Thus, the burden of disease is a more complete and accurate indicator characterizing the impact of chronic disabling diseases on the health of the population compared to traditional indicators of morbidity, prevalence, and mortality. Specifically for measuring the burden of disease, the concept of the burden of disease measure — DALY (Disability Adjusted Life Years) — the number of life years lost accounting for disability — was introduced (Murray C.L.L., T. Lopez A.D., 1990). Studying the burden of MS in Russia and St. Petersburg using methods developed and recommended by the World Health Organization (Mathers C.D. et al., 2001) will make it possible to obtain data comparable with the results of other studies in this field.

The study of the quality of life of patients with MS and the factors determining it is of great importance for the development of therapeutic, rehabilitation, and resocialization programs for such patients. A holistic approach to a person suffering from MS allows more adequately meeting their needs in the provision of medico-social care.

In recent decades, economic research in the field of medicine has been gaining increasing popularity. This applies to both pharmacoeconomic analysis, which enables a choice between different treatment technologies for patients based on their economic efficiency, and cost valuation of the impact of the disease on the welfare of society. The latter direction is of particular interest from the perspective of healthcare organization. Analyzing the cost of the disease from the perspective of society makes it possible to more adequately assess the magnitude of the problem associated with the prevalence of this disease and its economic impact on the welfare of society.

The goal of the present research is to develop practical proposals for optimizing medico-social care for patients with multiple sclerosis based on an analysis of the quality of life of patients and the socio-economic burden of multiple sclerosis. Research tasks:

1. Using a computer epidemiological modeling program, to assess the prevalence, incidence, and lethality of MS by sex-age groups for St. Petersburg and Russia as a whole;

2. To assess the burden of MS in St. Petersburg and Russia in DALY units;

3. To study the main medico-social characteristics of patients with MS;

4. To conduct an assessment of the quality of life of patients with MS and identify its main determinants;

5. To assess the direct and indirect costs associated with MS from the perspective of society (using the population of MS patients in St. Petersburg as an example), and to identify factors influencing the magnitude of these costs.

The scientific novelty of the research lies in the fact that for the first time, for the assessment of epidemiological characteristics of MS in Russia and St. Petersburg, the method of computer epidemiological modeling was applied using the DISMOD program developed by specialists of the World Health Organization for the Global Burden of Disease Study (WHO-2000). For the first time, the burden of MS was assessed for Russia and St. Petersburg in DALY units.

For the first time, on a sample of MS patients, the WHOQOL-BREF questionnaire for the study of quality of life was tested, values were obtained for the quality of life scales, and the main determinants of the quality of life of MS patients were studied.

For the first time, for Russian conditions, an attempt was made to assess the direct and indirect costs associated with MS, as well as the intangible costs of the disease, using the EuroQoL-5D questionnaire. Utility coefficients were obtained for the population of MS patients in St. Petersburg.

The practical significance of the present research is determined by its results, which made it possible to present objective scientifically substantiated information about the quality of life of MS patients to authorities, administrative bodies, and practical healthcare institutions. The results in terms of the assessment of the burden of MS can serve as a basis for determining priorities and directions for the development of medico-social care for those suffering from long-term chronic diseases, and in particular MS. The assessment of the burden of MS itself more accurately reflects the medico-social significance of this disease compared to such traditional indicators as incidence, prevalence, and others.

The study of the quality of life of MS patients and its main determinants makes it possible to more purposefully develop rehabilitation and social assistance programs for such patients, taking into account their needs. The use of quality of life research questionnaires is also of great importance in evaluating the effectiveness of therapeutic and rehabilitation programs for MS patients.

The assessment of costs associated with MS makes it possible, alongside the assessment of the burden of the disease, to determine the scale of damage inflicted on society by this disease and to use this information for decision-making in the planning of targeted medico-social assistance programs for MS patients.

Main provisions for defense:

1. The indicators traditionally used in domestic practice for the incidence and prevalence of multiple sclerosis do not allow a reliable assessment of the damage inflicted by this disease. The WHO-recommended burden of disease indicator in DALY units is a more accurate characteristic combining the loss of healthy life years due to premature death and disability. The burden of MS in the Russian Federation exceeds >0 000 DALY, in St. Petersburg — ~700 DALY.

2. The true incidence and prevalence of MS in Russia and St. Petersburg substantially exceed the registered indicators and are close to the average European level; the prevalence of MS among women is more than twice the value of this indicator for men.

3. The quality of life of MS patients is significantly influenced by the severity of the underlying disease, patient age, care and assistance from relatives, social assistance programs, and participation in rehabilitation programs.

4. A substantial share of the total costs associated with MS is accounted for by indirect costs attributable to labor losses due to temporary and permanent loss of working capacity of MS patients.

Implementation of research results in practice. The results of the present research are used in lectures and practical seminars for 4th-5th year students at the Department of Public Health and Healthcare of St. Petersburg State Medical University named after Academician I.P. Pavlov (implementation act dated 31.05), in seminars for students at the Department of Nervous Diseases of SPbSMU named after Academician I.P. Pavlov (implementation act dated 8.11.05), in the work of the St. Petersburg Medical Information and Analytical Center of the Committee on Healthcare of the Administration of St. Petersburg (implementation act dated 15.11.05), as well as in the Committee on Healthcare of the Government of St. Petersburg (implementation act dated 11.10.05), in the work of the general practice office of LNO "Center of General (Family) Practice SPbGU "Dedor" (implementation act dated 17.11.05).

Dissemination of the work. The main results of the research were reported and discussed at:

The Scientific and Practical Conference dedicated to the 300th anniversary of St. Petersburg "Hygienic Education and Upbringing of the Population in Disease Prevention" (St. Petersburg, 2003);

The 11th Congress of Chief Physicians of Therapeutic and Preventive Institutions and Centers of the Federal Service for Supervision of Consumer Rights Protection and Human Wellbeing of the North-West of the Russian Federation (St. Petersburg, 2003);

The XXXVIII Scientific Conference of SPbMAPO "Chronic Disease Readings" "Living Environment, Lifestyle, and Health" (St. Petersburg: SPbMAPO, April 20, 2005);

Sessions of the Problem Commission "Hygiene and Organization of Healthcare" of SPbSMU named after Academician I.P. Pavlov (St. Petersburg, 2003, 2005).

Volume and Structure of the Dissertation. The dissertation is presented in 114 pages of typescript, consisting of an introduction, 5 chapters, conclusions and practical proposals, a list of references, appendices, documents confirming the implementation of research results in practice. The list of references includes 218 sources, including 144 in foreign languages.