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Shapovalov KA, Shapovalova LA, Zaboeva MV, Arzubova IN, Chernikova TA (2024) Disabilities of the patients, visiting the children’s clinic, at the regional center of the subarctic territory with low population density. Open J Pediatr Child Health 9(1): 019-032. DOI: 10.17352/ojpch.000054Copyright
© 2024 Shapovalov KA, et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.A retrospective observational continuous cohort study includes an analysis of diseases that caused the onset of primary disability in 174 children of “SChCl No.3” and diseases that caused the onset of disability in 1690 children with disabilities in 2019-2021. A comparative analysis was carried out: the main dysfunctions in the state of health of children with disabilities and the leading limitations of life in the state of health of children with disabilities. (The control groups consisted of 231 children of “SChCl No.3” who received a disability for the first time and 1611 patients who were disabled in 2011-2018).
Prevention of childhood disability and support for families raising disabled children and children with limited health capabilities are among the main priorities of the state’s medical and social services. The results of periodic, quarterly, and annual reports of medical institutions must be transformed into analytical studies, which should become statistical tools for objectifying organizational and treatment processes, including providing assistance to patients with disabilities and determining medical forces and means for the successful implementation of their individual rehabilitation programs/ habilitation. In solving the problems of preventing childhood disability, priority should be given to the development of childbirth planning services, improvement of antenatal and perinatal care, preventive work with healthy children who have developmental disabilities, the introduction of screening programs for various types of pathology, and the development of medical genetic services [1-13].
Formation of indicators and standards of primary, general disability, main health disorders, and leading limitations in the life of disabled children in the patient population of “SChCl No.3” in 2019-2021. to justify and prepare the forces and resources of a medical institution for work in 2022-2024.
The study was conducted in the state budgetary healthcare institution of the Komi Republic (RK) “Syktyvkar Children’s Clinic No.3” (“SChCl No.3”), which is a united specialized clinic in the city of Syktyvkar with a capacity of 1,126 visits per shift and serves 42,079 children. The institution includes 47 pediatric sections, 2 medical outpatient clinics, an Intermunicipal Diagnostic Center, a Health Center, a rehabilitation center, and medical units in educational organizations: preschools - 69, schools - 39. 81.2% of the child population of Syktyvkar and 22, 4% of RK. Therefore, the results obtained can be extrapolated as possible not only to the entire child population of the regional center but also to the entire subarctic region of the Russian Federation (RF) with low population density.
A retrospective observational continuous cohort study included an analysis of: diseases that caused primary disability in 174 children “SChCl No.3” and diseases that caused disability in 1690 disabled children in 2019-2021. For these groups of disabled children, a comparative analysis was carried out: the main dysfunctions in the health status of disabled children and the leading limitations in life activity in the health status of disabled children. (The control groups consisted of 231 children from “SChCl No.3” who received disability for the first time and 1611 patients who were disabled in 2011-2018).
When working on the material, methodological approaches were used: systemic, complex, integration, functional, dynamic, process, normative, quantitative, administrative, and situational. Analysis methods included: historical, analytical, and comparative. The following techniques were used: grouping, absolute and relative values, detailing, and generalization. Indicators were calculated in absolute numbers, %, and Frequency Rates (FC) per 10,000 children. The results were processed by statistical methods. The arithmetic mean and standard deviation with a normal type of distribution of variables were used as the main characteristics. Qualitative characteristics were presented in the form of relative frequencies with the definition of a confidence interval. The significance of differences in quantitative characteristics between groups with a normal distribution of quantitative variables was calculated using Student’s t-tests for independent samples. The threshold error probability for statistically significant differences was set at a level of 0.05. The depth of the study was 11 years. Its organization was in the nature of stratified selection with the formation of a continuous sample. The criterion for including children in it was the completion of the state ITU service and the determination of their disability. Diseases that caused disability were considered in 19 classes of ICD X. The study population did not include disabled children with mental disorders, who in Syktyvkar are sent to a specialized medical and medical unit and undergo rehabilitation in a psychoneurological dispensary, and thus do not appear in the reports institutions.
As of January 1, 2023, the average population density in the Russian Federation was 8.55 people/km2. The Komi Republic ranks 76th in terms of population density with an indicator of 1.74. The maximum indicator in Moscow is 5116.82 (1st place), and the minimum in the Chukotka Autonomous Okrug is 0.07 (85th place). The population density in Syktyvkar is 1447.64, that is, 3.53 times less than in Moscow [14,15].
Structure and frequency of primary disability of children in “SChCl No.3” in the control group 2011-2018. and 2019-2021 are presented in Figures 1,2 and Tables 1,2 [16-21]. Retrospective analysis of primary disability indicators in “SChCl No.3” in 2011-2021. allows us to make a statistically reliable (p < 0.001) forecast in 2022-2024. it will be determined in at least 58 patients of the clinic, in whom the leading pathology will be VI Diseases of the nervous system G00-G99 (15 children with a specific gravity of 25.28 ± 3.29% in the overall structure p < 0.001 and a Coefficient of Frequency (CF) of 3.46 per 10,000 patients); XVII Congenital anomalies, chromosomal disorders Q00-Q99 (9-10, 16.67 ± 2.83%, CF-2.28); IV Diseases of the endocrine system, nutritional disorders and metabolic disorders E00-E90 (9-10, 15.52 ± 2.75%, CF-2.13); XIII Diseases of the musculoskeletal system and connective tissue M00-M99 (6-7, 10.92 ± 2.36%, CF-1.50); II Neoplasms C00-D48 and VIII Diseases of the ear and mastoid process H60-H9 (4-5 each, 8.05 ± 2.06%, all p < 0.001, CF-1.10); IX Diseases of the circulatory system I00-I99 (2, 3.45 ± 1.38%, CFF0.47); III Diseases of the blood and immune system D50-D89 (1-2, 2.88 ± 1.27%, Cn-0.40); VII Diseases of the eye and its appendages H00-H59 and XIV Diseases of the genitourinary system N00-N99 (1-2 each, 2.30 ± 1.14%, CF-0.31); XI Diseases of the digestive organs K00-K93 (1-0, 1.72 ± 0.99%, CF-0.24); XIX Injuries, poisoning and other environmental influences S00-T98 (0-1, 1.15 ± 0.81%, CF-0.16). Closing this series of classes according to ICD X will be I Infectious and parasitic diseases A00-B99, X Respiratory diseases J00-J99 and XII Diseases of the skin and subcutaneous tissue L00-L99 (0-1 each, 0.57 ± 0.57%, CF-0.08).
Structure and frequency of diseases that caused disability in the control group 2011-2018. and 2019-2021 are presented in Figures 3,4 and Tables 3,4 [22-25].
There will likely be 564 disabled children in 2022-2024. the leading pathology will be VI Diseases of the nervous system G00-G99 (193, 34.27 ± 1.99%, CF-45.59); XVII Congenital anomalies, chromosomal disorders Q00-Q99 (132-133, 23.49 ± 1.78%, CF-31.26); IV Diseases of the endocrine system, nutritional disorders and metabolic disorders E00-E90 (74, 13.14 ± 1.42, CF-17.48); II Neoplasms C00-D48 (49-50, 8.76 ± 1.19%, CF-11.65); VIII Diseases of the ear and mastoid process H60-H9 (39-40, 7.04 ± 1.08%, CF-9.37); XIII Diseases of the musculoskeletal system and connective tissue M00-M99 (18, 3.20 ± 0.74%, CF-4.25); VII Diseases of the eye and its adnexa H00-H59 (17-18, 3.14 ± 0.73%, all p < 0.001, CF-4.17); III Diseases of the blood and immune system D50-D89 (8-9, 1.48 ± 0.51%, CF-1.97); IX Diseases of the circulatory system I00-I99 (7-8, 1.30 ± 0.48%, CF-1.73); XIX Injuries, poisoning and other environmental impacts S00-T98 (6-7, 1.18 ± 0.45%, CF-1.57); I Infectious and parasitic diseases A00-B99 and XI Diseases of the digestive organs K00-K93 (4-5, 0.82 ± 0.38%, CF-1.10); XIV Diseases of the genitourinary system N00-N99 (3-4, 0.65 ± 0.34%, CF-0.88); X Respiratory diseases J00-J99 (2-3, 0.41 ± 0.27%, CF-0.56); XII Diseases of the skin and subcutaneous tissue L00-L99 (1-2 each, 0.24 ± 0.21%, CF-0.32); XVI Certain conditions of the perinatal period P00-P96 (0-1, 0.06 ± 0.10%, CF-0.08).
Structure and frequency of main violations in the health status of disabled children “SDP No. 3” in the control group 2011-2018. and 2019-2021 are presented in Figure 5 and Tables 5,6 [26,27]. Of the probable 564 disabled children in 2022-2024. the main health disorders will be disorders of organs and systems (199-200, 35.44 ± 2.02%, CF-47.17), static-dynamic (170-171, 30.30 ± 1.94%, CF-40, 32), mental (82-83, 14.73 ± 1.49%, CF-19.60), sensory (57-58, 10.30 ± 1.28%, CF-13.17), language and speech (50-51, 8.99 ± 1.21%, all p < 0.001, CF-11.97), disorders caused by physical deformities (1-2, 0.24 ± 0.21%, CF-0.32), general and generalized – 0.
Structure and frequency of the leading disability in the health status of disabled children in the control group 2011-2018. and 2019-2021 for the “SChCl No.3” contingent are presented in Figures 6,7 and Tables 7,8 [28,29]. Of the probable 564 disabled children in 2022-2024. the leading limitation will be: decreased ability to self-care (224-225, 39.87 ± 2.06%, CF-53.07); decreased ability to move independently (177-178, 31.54 ± 1.95%, CF-41.97); decreased ability to learn (61-62, 10.89 ± 1.31%, CF-14.49); decreased ability to communicate (51-52, 9.17 ± 1.22%, CF-12.21); decreased ability to orient (21-22, 3.79 ± 0.80%, CF-5.04); decreased ability to control one’s behavior (17-18, 3.20 ± 0.74%, CF-4.25) and decreased ability to work (8-9, 1.54 ± 0.51%, CF-2.05, all p < 0.001) [30-36].
The formation of indicators and standards for primary, general disability, main health disorders, and leading limitations in the life of disabled children of the patient population of the city children’s clinic of the regional center of the subarctic territory is a statistical tool that: 1) Reveals the role of indicators of disability of children for assessing and analyzing the condition children’s health; 2) Contributes to the adjustment of medical and social programs aimed at improving the health of the child population; 3) Assess the prospects for the final results of the work of the pediatric link in the health care system; 4) Allows you to foresee both the main trends in morbidity and disability of the adult population and the factors that determine them; 5) Stimulates management decision making [37-47].
Rehabilitation of disabled children in “SChCl No.3” is carried out on the basis of the city rehabilitation center, where more than 22,000 medical visits are carried out per year. The number of procedures provided to patients for all types of treatment exceeds 120,000 units. The number of primary patients per year is more than 2000 people. The department has day hospitals with 39 beds: neurological (23); otorhinolaryngological (5); pediatric (4); surgical (3); allergic-pulmonological (2) and ophthalmological (2) profile. The average length of stay for children in a rehabilitation center is 10-15 days. The main technologies used in the rehabilitation center: 1) KINESOTHERAPY: Physical therapy; Correction in the “Adele” and “Gravistat” suit; Dry pool; soft modular blocks; Various exercise machines: treadmill, rowing, exercise bike. 2) PHYSIOTHERAPY: Electrotherapy; Light therapy (including laser therapy); Thermotherapy; Vibration therapy; Magnetotherapy; Aerosol therapy. 3) REFLEXOTHERAPY: MRI; Foot therapy. 4) HYDROTHERAPY: Therapeutic swimming; Hydromassage. 5) THERAPEUTIC MASSAGE classic: General; Segmental; Spot; Local, etc. 6) PHYTOTERANY. 7) AEROION THERAPY. 8) AROMATHERAPY. 9) PSYCHOLOGICAL AND Speech Therapy DIAGNOSTICS AND CORRECTION: Individual; Group. 10) CONDUCTIVE PEDAGOGY: Fine motor skills; Montessori method; Role-playing games; Estheto-ergo-iso-zoo-agrotherapy. 11) MUSIC THERAPY + ART THERAPY. 12) METHOD OF CORRECTION SEND0B|rGO (“Sensory room”). 13) COMPUTER biofeedback, biological functional control. 14) SCHOOL OF HOME FAMILY REHABILITATION - a new highly effective technology.
Rehabilitation work with a contingent of disabled children in “SChCl No.3” is carried out according to the following main blocks: I. Medical rehabilitation sets the following goals: 1) Restoration of impaired functions of the child’s body by stimulating reparative and compensatory processes; 2) Formation of an attitude towards the inclusion of the damaged organism in life; 3) Prevention of complications of chronic and colds. Medical rehabilitation is carried out in combination with other blocks of rehabilitation of children on the principles of 1) Individual approach, taking into account the characteristics of the clinical prognosis and the age of the child; 2) Complexity (drug treatment, orthopedic and surgical correction, physiotherapeutic procedures, massage, swimming pool, exercise therapy) and sequence; 3) Medical monitoring of the results of rehabilitation measures (pediatricians at the rehabilitation center and clinic, neurologist, psychiatrist, orthopedist). II. Psychological rehabilitation aims to form, restore, and develop various types of mental activity, mental functions, qualities, and formations that allow the child to successfully adapt to the environment and society; accept and fulfill appropriate social roles, and achieve a high level of self-realization. Psychological rehabilitation included: 1) Psychodiagnostics: a) Features of the child’s current development; b) Forecasting the possibilities of its development; c) Assessment of indications for rehabilitation; d) Determination of optimal options for methods, techniques, and means of rehabilitation; e) Psychological counseling of children and parents; 2) Psychotherapy: a) Correction of intellectual development deficits; b) Training of basic mental functions: memory, thinking, attention; c) Development of self-control and self-regulation skills; d) Formation of communication skills; e) Increased resistance to stress; 3) Psychocorrection: a) Psychotraining; b) Relaxation; c) Psycho-gymnastics. Psychological rehabilitation is carried out by taking into account the psycho-physical characteristics and capabilities of children in a playful way with elements of puppet therapy and fairy tale therapy. During the classes, various teaching materials, toys, and technical aids (tape recorder, video equipment) are used. III. Correctional pedagogical work includes: 1) Helping children socialize within the limits given by the nature of the defect; adapting them to broad participation in work; 2) Identification of the child’s potential capabilities and determination of the “zone of proximal development”, taking into account psychophysical and age characteristics; 3) Development of speech, thinking, motor sphere, emotional and personal qualities; 4) Formation of the child’s personality; 5) Correction and maximum development of children’s cognitive characteristics; 6) Formation of compensatory ways of understanding the surrounding reality; 7) Development of intact aspects of cognitive activity; 8) Formation of prerequisites for children to master lesson materials, consolidation of this material; 9) Achieving the maximum possible rehabilitation to practical life in the environment. IV. Working with parents, methodological work sets the following goals: 1) Drawing up an individual multidisciplinary rehabilitation program for each child, based on differential diagnosis, determining the child’s rehabilitation potential, means, and methods of rehabilitation; 2) Special training for parents to carry out rehabilitation activities in the family; 3) The desire to help most fully through the prism of correctional work, adaptation and integration of children into the normal working and social environment of healthy people, as well as to create an opportunity for self-realization, maximum use of one’s abilities, to promote the child’s feeling of usefulness, and to create a sense of joy in life in sick children; 4) Help children become as independent as possible. For this purpose, “SChCl No.3” solves the main tasks: 1) Providing advisory assistance to parents with children with disabilities on issues of care, education, communication, and child development; 2) Teaching parents to communicate and play with children, to understand their child; 3) Psychological assistance and support for parents; 4) Joint classes of a speech pathologist with parents and a child; 5) Joint holidays with parents (for example, “Mom’s beloved”, “Easter”, “Friendly family”, “Christmas”, etc.); 6) Relaxation evenings for mothers and their children are regularly organized and held [48-59]. From the moment of birth of a child with symptoms of perinatal damage to the C.N.S. in the perinatal and postnatal periods, not only intensive treatment is carried out, but also early rehabilitation therapy aimed at restoring the functional activity of the nervous system. When drawing up individual rehabilitation programs, pediatricians distinguish two rehabilitation lines: 1) main and 2) auxiliary. Complex treatment carried out within the framework of individual rehabilitation/habilitation programs for disabled children makes it possible to completely restore health in 4.77% of patients, improve the condition in up to 5.77%, and stabilize the pathological process in up to 90.24%. Worsening of the condition occurs in 0.44% - 1.28% due to the progression of the disease [60-70].
The results of periodic, quarterly, and annual reports of medical institutions need to be transformed into analytical studies, which should become statistical tools for objectifying organizational and treatment processes, including providing assistance to patients with disabilities and determining medical forces and means for the successful implementation of individual rehabilitation/habilitation programs. Analysis of primary disability in “SChCl No.3” in 2011-2021. allows us to make a statistically reliable (p < 0.001) forecast in 2022-2024. it will be determined in at least 58 patients of the clinic, in whom the leading pathology will be VI Diseases of the nervous system G00-G99 (15 children with a specific gravity of 25.28 ± 3.29% in the overall structure p < 0.001 and a frequency of 3.46 per 10,000 patients); XVII Congenital anomalies, chromosomal disorders Q00-Q99 (9-10, 16.67 ± 2.83%, CF-2.28); IV Diseases of the endocrine system, nutritional disorders and metabolic disorders E00-E90 (9-10, 15.52 ± 2.75%, CF-2.13); XIII Diseases of the musculoskeletal system and connective tissue M00-M99 (6-7, 10.92 ± 2.36%, CF-1.50); II Neoplasms C00-D48 and VIII Diseases of the ear and mastoid process H60-H9 (4-5 each, 8.05 ± 2.06%, all p < 0.001, CF-1.10); IX Diseases of the circulatory system I00-I99 (2, 3.45 ± 1.38%, CF-0.47); III Diseases of the blood and immune system D50-D89 (1-2, 2.88 ± 1.27%, CF-0.40); VII Diseases of the eye and its appendages H00-H59 and XIV Diseases of the genitourinary system N00-N99 (1-2 each, 2.30 ± 1.14%, CF-0.31); XI Diseases of the digestive organs K00-K93 (1-0, 1.72 ± 0.99%, CF-0.24); XIX Injuries, poisoning and other environmental influences S00-T98 (0-1, 1.15 ± 0.81%, CF-0.16). Closing this series of classes according to ICD X will be I Infectious and parasitic diseases A00-B99, X Respiratory diseases J00-J99 and XII Diseases of the skin and subcutaneous tissue L00-L99 (0-1 each, 0.57 ± 0.57%, CF-0.08). There will likely be 564 disabled children in 2022-2024. the leading pathology will be VI Diseases of the nervous system G00-G99 (193, 34.27 ± 1.99%, CF-45.59); XVII Congenital anomalies, chromosomal disorders Q00-Q99 (132-133, 23.49 ± 1.78%, CF-31.26); IV Diseases of the endocrine system, nutritional disorders and metabolic disorders E00-E90 (74, 13.14 ± 1.42, CF-17.48); II Neoplasms C00-D48 (49-50, 8.76 ± 1.19%, CF-11.65); VIII Diseases of the ear and mastoid process H60-H9 (39-40, 7.04 ± 1.08%, CF-9.37); XIII Diseases of the musculoskeletal system and connective tissue M00-M99 (18, 3.20 ± 0.74%, CF-4.25); VII Diseases of the eye and its adnexa H00-H59 (17-18, 3.14 ± 0.73%, all p < 0.001, CF-4.17); III Diseases of the blood and immune system D50-D89 (8-9, 1.48 ± 0.51%, CF-1.97); IX Diseases of the circulatory system I00-I99 (7-8, 1.30 ± 0.48%, CF-1.73); XIX Injuries, poisoning and other environmental impacts S00-T98 (6-7, 1.18 ± 0.45%, CF-1.57); I Infectious and parasitic diseases A00-B99 and XI Diseases of the digestive organs K00-K93 (4-5, 0.82 ± 0.38%, CF-1.10); XIV Diseases of the genitourinary system N00-N99 (3-4, 0.65 ± 0.34%, CF-0.88); X Respiratory diseases J00-J99 (2-3, 0.41 ± 0.27%, CF-0.56); XII Diseases of the skin and subcutaneous tissue L00-L99 (1-2 each, 0.24 ± 0.21%, CF-0.32); XVI Certain conditions of the perinatal period P00-P96 (0-1, 0.06 ± 0.10%, CF-0.08). Their main health problems will be disorders of organs and systems (199-200, 35.44 ± 2.02%, CF-47.17), static-dynamic (170-171, 30.30 ± 1.94%, CF- 40.32), mental (82-83, 14.73 ± 1.49%, CF-19.60), sensory (57-58, 10.30 ± 1.28%, CF-13.17), linguistic and speech (50-51, 8.99 ± 1.21%, all p < 0.001, CF-11.97), disorders caused by physical deformities (1-2, 0.24 ± 0.21%, CF-0,32), general and generalized - 0. The leading limitations will be: decreased ability to self-care (224-225, 39.87 ± 2.06%, CF-53.07); decreased ability to move independently (177-178, 31.54 ± 1.95%, CF-41.97); decreased learning ability (61-62, 10.89 ± 1.31%, CF-14.49); decreased ability to communicate (51-52, 9.17 ± 1.22%, CF-12.21); decreased ability to orient (21-22, 3.79 ± 0.80%, CF-5.04); decreased ability to control one’s behavior (17-18, 3.20 ± 0.74%, CF-4.25) and decreased ability to work (8-9, 1.54 ± 0.51%, CF-2.05, all p < 0.001). The generated indicators and standards of primary, general disability, main health disorders, and leading limitations in the life of disabled children of the patient population of the city children’s clinic of the regional center of the subarctic territory is a statistical tool for everyday use to objectify the rehabilitation process, their comparative assessment and determination of the strength and means of a medical institution for successful follow-up of patients, as well as forecasting possible statistically reliable indicators of childhood disability in the near future.
For the period from 2011 to 2021. primary disability in “SChCl No.3” increased in absolute terms by 5.0 times from 12 to 60 people and a growth rate of 500.00%. The frequency of primary disability increased by 1.66 times from 8.58 per 10,000 patients to 14.26, the growth rate was 166.20%. The expected trend will determine the further increase in the number of disabled children. Quantitative and qualitative analysis of indicators of primary disability, diseases that caused disability in children, main health disorders, and leading limitations in the life of patients in “SChCl No.3” in 2011-2021. allows us to make a correct, statistically reliable forecast of probable childhood disability in 2022-2024.
In this regard, it is necessary to ensure large-scale development and steady improvement in the quality of medical and genetic counseling assistance to the population of reproductive age. It is important to ensure the priority development of the prenatal diagnosis of emerging pathologies and congenital defects, primarily compatible with life, for their possible further correction, as well as the active introduction of modern technologies for high-quality nursing and rehabilitation of newborns.
Extension of the state program “Maternity Capital” in order to increase the birth rate in the Russian Federation requires ensuring the rapid development of the material and technical base of pediatric outpatient and inpatient institutions. Each municipality needs to have institutions for the rehabilitation treatment of children, and in the regional center - a multidisciplinary network of such institutions. Provide every child in need with a voucher for treatment in a specialized sanatorium.
Despite the improvement in the ability to care for low birth weight children and children with critical body weight at birth, they are the risk groups for serious deviations as the body grows and develops. At the same time, attention should be paid to the increase in children with chronic pathologies who require medical rehabilitation and the decrease in the number of school-age children with health groups I and II.
The reserves for reducing primary disability of children should be considered: Increasing the effectiveness of the implementation of preventive programs for childhood disability by expanding the range of mass (screening) examinations of children for congenital and hereditary pathologies; Equipping federal and regional medical genetic centers and consultations with modern equipment for prenatal diagnosis; Increasing the level of professional training of specialists.
Effective work with high-risk families on timely decision-making to prevent the birth of a disabled child at the present stage of crisis economic phenomena in the Russian Federation must be considered as the main one, although it requires thoughtful, painstaking work of medical personnel with future parents. The economic costs of the preventive work of a practicing physician are minimal compared to the implementation of the above reserves. It is important to convince parents of the possibility of having a healthy child in the future and the difficulties of correcting the already existing severe prenatal pathology of the organism developing in the womb. A serious argument can be the belief that there are limited opportunities for a disabled child to have a quality life after the passing of their aged parents in the absence of other selflessly interested relatives.
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