Social-Hygienic Study of the Health Status and Quality of Life of Children with Disabilities Due to Congenital Malformations of the Spinal Cord

The dissertation is devoted to a social-hygienic study of the health status and quality of life of children with disabilities due to congenital malformations of the spinal cord. The work encompasses a comprehensive analysis of the medical-social factors affecting the health of children with this pathology, including the study of morbidity, characterization of living conditions, and organization of medical care. The research is aimed at substantiating and developing medical-organizational measures to improve the quality of life of children with disabilities.

The work examines the features of general and specialized morbidity in children with disabilities due to congenital malformations of the spinal cord, the medical-social characteristics of their parents, and the role of medical-social rehabilitation in maintaining and improving the quality of life of this contingent. Special attention is given to the factor determinism of congenital malformations of the spinal cord and to the interaction of various institutions within the system of medical-social assistance.

Relevance of the study. The sustained growth of the well-being of the population and the economic potential of the country is directly dependent on the level of public health, which is determined by the health of each individual. Of particular importance are indicators of child health, since by preserving children's health, the state and society create the foundation for the reproduction of healthy generations (Vaganov N.N., 1999; Gerasimenko N.F., 1997; Baranov A.A., 2002; Onishchenko G.G., Baranov A.A., Kuchma V.R., 2004; et al.).

Enhanced attention to the protection of child health by health authorities and institutions is also determined by the fact that children belong to the most vulnerable group of the population, requiring the preparation of specialized medical personnel, the organization of appropriate treatment, health-improvement, and educational institutions intended for providing medical-social assistance to children (Lisitsyn Yu.P., Polunina N.V., 2002; Starodubov V.I., 2003; Rumyantsev A.G., 2004; et al.).

Negative trends in child health have manifested in an increase in morbidity among children over the past 10 years and, as a result of this, an increase in the number of children with chronic diseases and children with disabilities (Onishchenko G.G., Belyaev E.I., Baranov A.A., Kuchma V.R., 2004; et al.). Official data indicate that over the past decade, morbidity among children under 14 years of age with a newly established diagnosis increased by 1.4 times, or 42.5% (1992: 105.1 cases, 2001: 149.9 cases per 100,000 children).

During the same period, the number of diseases leading to disability in children also increased by 4.4 times, or 343.1% (1992: 43.1 diseases, 2002: 191.9 diseases per 10,000 children). Among these, first place among the causes of disability in children is occupied by diseases of the nervous system, and within this group the maximum is attributable to disability caused by lesions of the central nervous system, among which cerebral palsy in children and congenital malformations of the spinal cord predominate (66.1%) (Socially Significant Diseases of the Russian Population in 2002. - Moscow, 2003). Unfortunately, children with disabilities suffering from severe neurological pathology leading to limitation of their vital activity and, accordingly, to developmental impairments in the child, to loss of orientation in society, and social maladjustment due to difficulties in learning and communication, and in the future to participation in labor activity, belong to the least protected group of the population (Lilin E.T., Doksin V.A., 1997; Zelinskaya D.I., 1998, 2001; Puzin S.N., 2002; Polunin V.S., 2002; Perepelkina N.Yu., 2003; et al.).

Scientific studies conducted on problems of disability in children have been devoted to the study of its prevalence and structure, the use of various methods of surgical and conservative restorative treatment, and the organization of examination of children with disabilities. Individual works have elucidated the features of medical-social rehabilitation among children with disabilities. However, despite the fairly extensive study and coverage in available literature of issues relating to the health of children with disabilities, the features of morbidity in children with disabilities due to congenital malformations of the spinal cord have not been examined, the factor determinism of the occurrence of this pathology has not been determined, and the quality of life of children with disabilities and possibilities for its improvement have not been studied. This circumstance makes the conduct of the present study appropriate and relevant, and underscores the scientific and practical significance of the formulated goal and objectives.

Goal of the study. As a result of a social-hygienic study of the health status and lifestyle of children with disabilities due to congenital malformations of the spinal cord, to substantiate and develop medical-organizational measures aimed at improving the quality of life of a child with a disability.

To achieve the stated goal of the present study, the following tasks have been formulated:

• to develop a program and methodology for the social-hygienic study of children with disabilities suffering from congenital malformations of the spinal cord;

• to study and evaluate neurological morbidity and identify features of the general morbidity of the studied contingent of children with disabilities;

• to provide a social-hygienic portrait of a child with a disability having congenital malformations of the spinal cord;

• to present the medical-social characteristics of parents raising children with disabilities due to congenital malformations of the spinal cord;

• to determine characteristic features of the lifestyle of families raising a child with a disability with neurological pathology;

• to study the organization of medical-social assistance to women-mothers and children with disabilities provided in treatment-and-prophylactic institutions and the specialized bureau of medical-social examination;

• to determine the role of medical-social rehabilitation in improving the quality of life of children with disabilities.

Scientific novelty of the present study is determined by the fact that for the first time a multi-stage social-hygienic study of the health status and social-hygienic characteristics of children with disabilities due to congenital malformations of the spinal cord has been conducted. In the work, the general morbidity of children in the main and control groups has been analyzed in detail. This made it possible to identify a higher level and a different structure of morbidity among children with disabilities, which must be taken into account in the organization of pediatric service activities.

Analysis of morbidity associated with the leading pathology in children with disabilities revealed the prevalence and structure of the leading impairments limiting the vital activity of children with disabilities and reducing their quality of life.

The study of the medical-social characteristics of parents having a child with a disability made it possible to determine the main risk factors contributing to the development of spinal cord defects at the level of early embryogenesis. The study of the organization of medical assistance to women during pregnancy and to their children in children's treatment-and-prophylactic institutions revealed low medical activity among women, insufficient preparedness of physicians on neurological issues, and a lack of interest among physicians in carrying out preventive measures.

Practical significance. On the basis of the obtained results, the most effective measures for improving the organization of medical supervision of women during pregnancy and of children in primary-level treatment-and-prophylactic institutions have been determined. The questionnaires developed in the present study for assessing the quality of life of children with disabilities make it possible to clarify the severity of impairments and to determine the dynamics of the pathological process as a result of medical-social rehabilitation.

It has been scientifically confirmed that the effectiveness of medical-social assistance to children with disabilities is determined by the degree of interaction among institutions of different departmental affiliation (treatment-and-prophylactic institutions, specialized pediatric bureau of medical-social examination, institutions of public education), ensuring the staged, continuous, and systematic implementation of rehabilitation measures.

The materials of the present study are used in the educational process at the departments of public health and health care of the Russian State Medical University and the Institute of Medical and Social Rehabilitation, the department of restorative therapy and assessment of work capacity of the advanced training faculty of the Russian State Medical University, and in health care and social welfare institutions. Based on the materials of the study, methodological recommendations on the "features of morbidity in children with disabilities due to congenital malformations of the spinal cord" have been published.

Verification of the work. The materials of the completed dissertation research have been reported, discussed, and approved at: the Russian Scientific and Practical Conference "Medical-Social Problems of Children with Disabilities" (Moscow, 2002); the Moscow City Scientific and Practical Conference "Problems of Rehabilitation of Children with Neurological and Orthopedic Pathology" (Moscow, 2003); the Scientific and Practical Conference "Health, Labor, and Leisure" (Moscow, 2003); the X and XI National Congresses "Man and Medicine" (Moscow, 2003, 2004), and at a seminar within the IX Congress of Pediatricians of Russia "Current Problems of Pediatrics" (Moscow, 2004).

Main provisions for defense:

• features of the health status of children with disabilities due to congenital malformations of the spinal cord, characterized by a high level of morbidity and a predominance in its structure of congenital anomalies, diseases of the nervous, urogenital, and musculoskeletal systems;

• the specificity of the leading pathology in children with disabilities with disorders of the central nervous system lies in the combination of a defect in spinal cord development with malformations of the vertebral column, and in the presence of multiple impairments of vital activity determined by the level of the lesion;

• the influence of medical-social factors characterizing the parents of a child with a disability on the formation of congenital malformations of the spinal cord, among which the most significant are such as the high prevalence of diseases of the urogenital system caused by infectious and viral agents, congenital anomalies, a complicated obstetric history, and a low level of medical behavior of the woman (work with occupational hazards, abuse of tranquilizers, hypnotic drugs, and alcoholic beverages, smoking);

• an individual rehabilitation program for a child with a disability, developed at the SPB MSSE and implemented in specialized treatment-and-prophylactic institutions in full, makes it possible to improve the quality of life of persons with disabilities and to improve the mental state of the child.