List of Abbreviations
VNVLP – Vital and Essential Drugs for medical use
CT – computed tomography
ICD-10 – International Classification of Diseases 10th Revision
MRI — magnetic resonance imaging
MRO – medical and rehabilitation department of the psychoneurological dispensary
PND – psychoneurological dispensary
RCT – randomized controlled trials
ultrasound – ultrasound examination
Echo-EG – echoencephalography
EEG – electroencephalography
IQ – intelligence quotient
ID – intellectual disability
GPP – Good practice point
Terms and Definitions
Intellectual disability is a heterogeneous group of conditions caused by congenital or early-acquired mental underdevelopment with pronounced insufficiency of intelligence (cognitive, speech, and social abilities), accompanied by impaired adaptive behaviour that makes adequate social functioning of the individual difficult or completely impossible.
Mental underdevelopment is a set of etiologically diverse hereditary, congenital, or early-acquired persistent non-progressive syndromes of general mental retardation, manifesting in difficulty with social adaptation primarily due to a predominant intellectual defect.
Oligophrenia: the term "oligophrenia" has a narrower meaning—the formation during a child's development of a defect limited to the intellectual sphere.
1. Brief information on the disease or condition
1.1 Definition of the disease or condition
According to ICD-10, intellectual disability is a condition of arrested or incomplete development of mind, which is especially characterised by impairment of skills manifested during the developmental period, contributing to the overall level of intelligence, i.e., cognitive, language, motor, and social abilities [11, 22]. Intellectual disability can develop with any other mental or somatic disorder, or occur without one. However, individuals with intellectual disability may exhibit the full range of mental disorders, the frequency of which among them is at least 3–4 times higher than in the general population. Adaptive behaviour is always impaired, but in protected social environments that provide support, this impairment in patients with mild intellectual disability may not be apparent at all.
1.2 Etiology and pathogenesis of the disease or condition (group of diseases or conditions)
The diversity of pathogenic factors and the lack of a single etiology of intellectual disability make it difficult to assess causal relationships in the origin of intellectual disability. In most cases, environmental and hereditary factors act in a complex interaction and unity. However, there are also pathogenetic links common to all forms of intellectual underdevelopment that lead to similar clinical manifestations of the intellectual disability syndrome, among which a particularly important role belongs to the chronogenic factor, i.e., the period of ontogenesis in which damage to the developing brain occurs. Various pathogenic influences, both genetic and exogenous, acting during the same period, can cause identical clinical manifestations, while the same etiological factor acting at different stages of ontogenesis can lead to different consequences [5, 12].
In intellectual disability, which represents a polymorphic group of pathological conditions, a wide variety of clinical and psychopathological disorders is noted. Clinically differentiated and clinically undifferentiated forms of intellectual disability are distinguished.
The group of clinically differentiated intellectual disability includes independent diseases with a specific clinical, psychopathological, and somatoneurological picture, for which mental underdevelopment is one of the symptoms, usually the most severe one. More often, these are genetically determined disorders or clinically delineated syndromes with characteristic somatoneurological manifestations whose etiology is not yet clear [9, 10].
Various forms of intellectual disability differ significantly from each other in their pathogenetic mechanisms. However, there are also common links of pathogenesis,
About 75% of intellectual disabilities are caused by brain damage in the prenatal period. Impairment in the formation of organs and systems most often occurs during critical stages of their development. All prenatal developmental anomalies are subdivided into blastopathies, caused by damage to the embryo during the blastogenesis period (up to 4 weeks of pregnancy); embryopathies, damage during the period of embryogenesis, i.e., from 4 weeks to 4 months of pregnancy; as well as fetopathies, damage to the fetus from 4 months to the end of pregnancy.
1.3 Epidemiology of the Disease or Condition
Global prevalence rates of intellectual disability according to official medical reporting vary in a wide range: from 3.04 to 24.6 and higher per one thousand population. According to the World Health Organization, as well as a number of domestic and foreign authors, the prevalence rates of intellectual disability in the population range from 1 to 3% of the population [5]. In regions exposed to ecopathogenic factors, as well as in isolated social groups, the prevalence of this pathology can reach 7% [5]. Among males, intellectual disability occurs approximately 1.5 times more often than among females. Such a ratio is most noticeable in mild mental underdevelopment, while in severe degrees of intellectual insufficiency, as a rule, there is no quantitative difference between boys and girls. According to Rosstat, as of 2022, there are about 1.5 million people with intellectual disabilities living in Russia. Of these, about 800 thousand are adults. Thus, the proportion of people with intellectual disabilities is about 1% of the total country's population [5, 48].
1.4 Features of Coding the Disease or Condition
In accordance with ICD-10, intellectual disabilities belong to Chapter V [11].
Mild intellectual disability (F70):
F70.0 Mild intellectual disability, with statement of no or minimal impairment of behaviour
F70.1 Mild intellectual disability, significant impairment of behaviour requiring attention or treatment
F70.8 Mild intellectual disability, other impairments of behaviour
F70.9 Mild intellectual disability, without mention of impairment of behaviour
Moderate intellectual disability (F71):
F71.0 Moderate intellectual disability, with statement of no or minimal impairment of behaviour
F71.1 Moderate intellectual disability, significant impairment of behaviour requiring attention or treatment
F71.8 Moderate intellectual disability, other impairments of behaviour
F71.9 Moderate intellectual disability, without mention of impairment of behaviour
Severe intellectual disability (F72):
F72.0 Severe intellectual disability, with statement of no or minimal impairment of behaviour
F72.1 Severe intellectual disability, significant impairment of behaviour requiring attention or treatment
F72.8 Severe intellectual disability, other impairments of behaviour
F72.9 Severe intellectual disability, without mention of impairment of behaviour
Profound intellectual disability (F73):
F73.0 Profound intellectual disability, with statement of no or minimal impairment of behaviour
F73.1 Profound intellectual disability, significant impairment of behaviour requiring attention or treatment
F73.8 Profound intellectual disability, other impairments of behaviour
F73.9 Profound intellectual disability, without mention of impairment of behaviour
Other intellectual disabilities (F78)
F78.0 Other intellectual disabilities, with statement of no or minimal impairment of behaviour
F78.1 Other intellectual disabilities, significant impairment of behaviour requiring attention or treatment
F78.8 Other intellectual disabilities, other impairments of behaviour
F78.9 Other intellectual disabilities, without mention of impairment of behaviour
Unspecified intellectual disability (F79)
F79.0 Unspecified intellectual disability, with statement of no or minimal impairment of behaviour
F79.1 Unspecified intellectual disability, significant impairment of behaviour requiring attention or treatment
F79.8 Unspecified intellectual disability, other impairments of behaviour
F79.9 Unspecified intellectual disability, without mention of impairment of behaviour
1.5 Classification of the disease or condition
The systematics of forms of intellectual disability includes classifications based on the severity of the intellectual defect, morphological classifications, classifications based on psychological and clinical signs, etiological classifications, and clinical-physiological classifications.
An important variant of typology from a clinical standpoint is the clinical-physiological classification of mental underdevelopment proposed by S.S. Mnukhin and subsequently supplemented by D.N. Isaev [5]. According to this classification, intellectual disability is subdivided into four forms: asthenic, atonic, sthenic, and dysphoric.
1.6 Clinical presentation of the disease or condition
The characteristic clinical features of intellectual disability are, first of all, the predominance of intellectual insufficiency over the defect of other mental functions and the absence of progression in the main symptoms of the disease. It should be noted that a progressive course is possible in certain forms of intellectual disability. For example, in phenylketonuria, progressive dynamics of the disease are observed in the first years of life [5].
As a rule, intellectual disability represents a manifestation of dysontogenesis of the brain and the entire organism as a whole. In patients with intellectual disability, the highest forms of thinking—the processes of generalization and abstraction—are impaired. The thinking of these patients is at a developmental stage where the establishment of particular, strictly concrete connections is paramount in cognitive activity, while the highest forms of abstract thinking are absent. The inability to engage in conceptual thinking is most clearly manifested in the "object classification" experiment: the isolation of species and generic concepts, and the operation with the most general features, are practically inaccessible to these patients. The insufficiency of the process of abstraction is also manifested in the inability to understand the figurative meaning of proverbs, sayings, and metaphors.
The inability to engage in abstract thinking, characteristic of intellectual disability, is also reflected in the features of attention, perception, and memory. Attention in patients with intellectual disability is difficult to attract, poorly fixed, and characterized by easy distractibility. Perception is relatively poor and inadequately reflects the surrounding environment. Memory is also deficient: everything new is assimilated extremely slowly and only after repeated repetition. While in some variants of intellectual disability, rote memory can be quite satisfactory, semantic memory is always impaired. Thus, when reproducing read text, the patient cannot convey the main meaning in their own words, but strives to recount everything verbatim.
In close connection with the underdevelopment of the highest forms of cognitive activity is the underdevelopment of the patients' speech, which manifests primarily in the delayed stages of its development. The degree of speech underdevelopment in most cases correlates with the severity of the intellectual defect. Both the development of active speech and its comprehension suffer. There is a limited vocabulary, speech impediments, the passive vocabulary significantly exceeds the active one, speech is often inexpressive, phrases are short, quite often agrammatic, and incorrect usage of words according to meaning is characteristic.
Emotions are characterized by rigidity. For these patients, only immediate experiences are relevant; they are incapable of reacting to joy and grief that may occur in the future. Typical features are low differentiation of emotions, their monotony, lack of subtle shades of experience, and insufficient ability to suppress their emotional manifestations. At the same time, a greater preservation of the emotional sphere compared to the depth of the intellectual defect clearly stands out. Thus, even with pronounced intellectual disability, manifestations of sympathy and the desire to help others can often be noted; such patients may experience a sense of hurt, shame for their wrongdoing, and a feeling of deep attachment. Their temperament and character are also quite diverse. Among them, one can observe affectionate and obedient, malicious and aggressive, or sullen and gloomy subjects; along with calm and balanced individuals, one can see sluggish, apathetic, or overly active and fussy ones.
Disturbances in the volitional sphere of patients with intellectual disability are highly dependent on the level of intellectual underdevelopment. The more pronounced the intellectual defect, the less motivated the patient's actions are, and the more frequently they are determined solely by momentary desires (emotions) or drives. There are always signs of impulsivity in their activity; actions are committed without the struggle of motives that takes place in healthy people.
Mild intellectual disability is generally characterized by relatively good rote memory. In some cases, these patients are able to acquire a significant stock of knowledge and elementary skills in reading, writing, and arithmetic. Sometimes a good rote memory and a relatively rich vocabulary can mask the weakness of mental activity and the inability to form abstract concepts. These patients do not show independence and initiative in work (study); the main difficulty is the transition to mental tasks, the solution of which requires replacing the habitual mode of activity with a new and yet unknown one. The emotional and volitional aspects of the personality in mild intellectual disability are quite diverse, but the common features are an insufficient ability for self-control and suppression of drives, impulsivity against the background of increased suggestibility and a tendency toward imitation. With proper upbringing and education, the implementation of psychological and pedagogical correction with the instilling of labor skills in the patients, they can master a number of unskilled professions, primarily manual labor, and show good everyday adaptation to life. Thus, the majority of these patients are trainable (special education school program) and can subsequently live independently. The optimal age range for the final diagnosis of mild intellectual disability is 6 to 8 years. In ICD-10, when characterizing this group of patients, it is noted that, overall, the behavioral, emotional, and social disorders in the majority of individuals with mild intellectual disability, and the resulting need for therapy and support, much more closely resemble the problems of people with a normal level of intelligence than the specific problems of patients with deeper degrees of mental underdevelopment.
Adults with moderate intellectual disability (F71) are capable of accumulating a certain stock of knowledge, and rote memory is sufficiently developed in many of them. Such patients also acquire speech, although their vocabulary is small, speech is agrammatic, and the comprehension and use of speech are limited. In moderate intellectual disability, the consciousness of their "Self" is more or less developed. Many of the patients are egocentric, demand increased attention, and show joy at a positive evaluation of their actions and resentment when scolded. When conversing with these patients, one can notice that to questions requiring effort, they answer "I can't," "I don't know," "I don't want to." Special educational programs can provide certain opportunities for acquiring a number of basic skills and abilities, but the volume of assimilated material is extremely low. With sufficient motor development, patients with moderate intellectual disability can master simple types of labor, but their work is mechanical in nature; they are unable to change their activity according to a changed environment. As a rule, these patients are not adapted to independent life and need constant guardianship and care. The optimal age range for the final diagnosis of moderate intellectual disability is 3 to 5 years.
The clinical picture of severe intellectual disability (F72) is primarily similar to the symptomatology of moderate intellectual disability. An even lower level of social functioning is noted, which manifests in the practically complete impossibility to assimilate elementary school knowledge, household skills, and abilities. Usually, these patients need guardianship and constant care throughout their lives. Unlike patients with moderate intellectual disability, these patients exhibit pronounced motor disorders, which also complicates even their simple social adaptation. The optimal age range for the final diagnosis of severe intellectual disability is 3 to 5 years.
For patients suffering from profound mental retardation (F73), a sharp decrease in response to the environment is characteristic. They either do not react at all to everything happening around them, or give inadequate reactions, responding to any stimulus without lingering on any of them. Articulate speech is absent; when speech is addressed to them, patients perceive intonation but do not understand the meaning. Left to themselves, many of them remain motionless, others are in a state of aimless constant movement, crawl, grab objects, can be aggressive, or auto-aggression is noted. States of motor excitation occur periodically and often for no apparent reason. Manifestations of pleasure or displeasure are primitive. Somatic well-being and a feeling of satiety lead to complacency and calmness, while hunger or other unpleasant sensations are expressed in cries with an expression of displeasure, agitation, or other similar manifestations. Fear and crying may be observed in response to the unknown. Perverted or altered drives are often noted: bulimia or perversions of eating behavior, hypersexuality, for example, accompanied by persistent masturbation, etc. The profound underdevelopment of all mental activity is correlated with various physical development defects, including gross ones: dysplasia, skull deformities, malformations and developmental anomalies. Neurological symptoms, including paresis and paralysis, are also frequently observed. The optimal age for diagnosing profound mental retardation, especially from the perspective of prognosis and social consequences of the disease, is the first months (the first year) of life. In any case, profound mental retardation must be diagnosed before the age of 3.
2. Diagnostics, medical indications and contraindications for diagnostic methods
The diagnosis of mental retardation is usually established for the first time between the ages of 6 and 8 by a child psychiatrist. In a number of obvious cases, in the absence of significant shifts in the clinical picture against the background of adequate medical and pedagogical assistance, it is established by 3–4 years of age. After 18 years of age in adults, diagnostics is carried out by a district psychiatrist in a psychoneurological dispensary. The diagnosis of mental retardation is established by a psychiatrist based on the clinical picture characteristic of mental retardation and the history of development—a combination of symptoms of intellectual defect, disorders and the degree of preservation of perception, memory, attention, thinking, the emotional-volitional sphere, and the degree of adaptation to the environment [5]. When examining a patient over 18 years of age, to clarify the clinical picture, it is necessary to assess the dynamics of both intelligence and the psyche as a whole. Criteria for establishing the diagnosis/condition:
1) anamnesis data,
2) laboratory test data,
3) instrumental diagnostic research data (differential diagnostics),
4) data of other diagnostic methods.
2.1 Complaints and Anamnesis
It is recommended that all individuals who were diagnosed with "mental retardation" under the age of 18 undergo an initial consultation (examination, consultation) by a psychiatrist (B01.035.001) for examination in order to confirm the diagnosis [12].
LoE CGoE 5Level of evidence — C, grade of recommendation — 5.
Comments: The following require examination to establish, confirm, or rule out the diagnosis of mental retardation: (1) individuals referred for medical and social expertise, (2) individuals referred to a military medical commission to resolve the issue of fitness for military service in the Armed Forces of the Russian Federation based on mental health status, (3) individuals referred for examination to rule out restrictions on performing certain types of professional activities and activities associated with a source of increased danger. When diagnosing mental retardation, one should not be limited only to establishing the fact of general mental underdevelopment; therefore, the goal becomes formulating an exhaustive diagnosis that reflects, first of all: an assessment of the severity of the intellectual defect and its features, the clinical and psychological characteristics of the defect structure, the presence of comorbid disorders, etiological factors, the degree of adaptation to the environment, and socio-psychological factors involved in the formation of the clinical picture of the disease and social adaptation. Mental retardation may develop with any other mental or somatic disorder, or occur without it. However, mentally retarded individuals may exhibit the entire range of mental disorders, the frequency of which among them is at least 3–4 times higher than in the general population [5, 7, 11, 18].
2.2 Physical Examination
Not performed [16].
2.3 Laboratory Diagnostics
Not performed [16].
2.4 Instrumental Diagnostics
The majority of individuals with intellectual disability exhibit various structural brain changes, and sometimes skull bone changes as well. Instrumental examinations make it possible to clarify these changes and, in some cases, are also used in the differential diagnosis of intellectual disability.
It is recommended to perform skull radiography in one or more projections (A06.03.005) in adults with intellectual disability if such an examination has not been previously performed, in order to detect bone structure abnormalities upon visual detection of cranial bone defects [5, 12].
GOR CLOE 5Grade of Recommendation — C, Level of Evidence — 5
Comment: Skull radiography in one or more projections allows for the detection of bone hypertrophy, as seen, for example, in Hurler syndrome. Premature suture closure may also be identified. Intracerebral calcifications are detected in toxoplasmosis, Sturge-Weber syndrome, tuberous sclerosis, and idiopathic hypoparathyroidism. Radiography is of particular importance for clarifying the diagnosis of hydrocephalus, which presents with increased skull size, bone thinning, and suture diastasis.
2.5 Other Procedures
It is recommended that all patients with intellectual disability undergo psychological assessment using generally accepted psychological tools (Wechsler test, Raven's test) no more than once a year to evaluate the level of intellectual development when referred for medical and social expertise, military medical expertise, forensic psychiatric expertise, and occupational suitability expertise, as well as during dynamic follow-up to assess the trajectory of intellectual development during treatment and education [12, 15].
GOR CLOE 5Grade of Recommendation — C, Level of Evidence — 5
Comment: In clinical practice, Wechsler test scores are most frequently used to determine disability. Total scores from intelligence tests should be regularly used in diagnosing intellectual disability, except when the validity of the total IQ score is in doubt, in which case a corresponding subscale score may be used instead. An intelligence test result indicating intellectual disability is two or more standard deviations (SD) below the mean (e.g., a score of 70 or below, where the mean = 100 and standard deviation = 15). Substantial and significant discrepancies between the scores of corresponding Wechsler subscales may compromise the validity of the full-scale IQ score. In such situations, the corresponding subscale scores may better reflect the individual's true overall level of cognitive functioning. It is an error to establish a diagnosis of intellectual disability (including during various expert evaluations) based solely on numerical intelligence quotient values (usually obtained via Wechsler testing). In all cases, the diagnosis must be established by a psychiatrist based on clinical data, and any psychological methods are supplementary rather than definitive for diagnosis.
3. Treatment, including drug and non-drug therapies, diet therapy, and pain management
Intellectual disability may co-occur with any psychiatric and neuropsychiatric disorders, the treatment of which is described in the relevant clinical guidelines. For the treatment of frequent comorbid disorders—such as anxiety, fears, and obsessive-compulsive states—please also refer to the corresponding clinical guidelines.
In most cases of intellectual disability, symptomatic treatment is administered. There are no evidence-based studies on the use of nootropic drugs (N06B Psychoanaleptics, psychostimulants, agents used for attention deficit hyperactivity disorder [ADHD], and nootropics), but they are traditionally used in the treatment of various pathologies, particularly in individuals suffering from intellectual disability. The prescription of this drug group in accordance with the package insert is advisable in the treatment of complicated forms of intellectual disability, particularly with asthenic and other, usually organic, symptoms.
The main objectives of treatment in adults with intellectual disabilities are the reduction or elimination of comorbid behavioral disturbances. Depending on the leading cause of the development or intensification of behavioral disorders, the structure of therapeutic interventions shifts toward predominantly pharmacotherapy or strengthening the psychotherapeutic component of comprehensive treatment. The combined use of pharmacological and non-pharmacological methods of treatment, coupled with occupational therapy, social work with the family and the patient, is one of the fundamental principles of managing behavioral disorders in individuals with intellectual disabilities.
The adequacy of therapeutic intervention depends on a correct assessment of the ratio of causal factors, determining the specific weight of biological and socio-psychological components that dictate the stage-by-stage orientation toward a particular intervention—pharmacological or correctional-pedagogical. Behavioral correction should be carried out, whenever possible, in an outpatient setting.
Psychopharmacotherapy is not the primary treatment method and should be administered strictly according to clinical indications and for a limited period. Its use is justified only in cases of severe and uncorrectable forms of behavioral disorders, in the presence of a "biological soil" predisposing to behavioral disorders, as well as in the presence of prominent comorbid emotional and somatovegetative disorders, to relieve affective tension during the initial stages of correctional-pedagogical work [3, 12, 23].
Haloperidol** is recommended in adults with intellectual disabilities for the management of psychomotor agitation [55].
GCR BLEL 2Grade of Recommendation — B, Level of Evidence — 2
Risperidone** is recommended #in adults with intellectual disabilities for the management of increased irritability, aggression, and self-injurious behavior. When administered orally, the average recommended dosage is 1.5–2 mg/day divided into two doses; increasing the dose above 2.0 mg/day leads to a minor increase in the therapeutic effect, but a significant increase in adverse effects [31].
GCR BLEL 2Grade of Recommendation — B, Level of Evidence — 2
Comment: short-term (up to 6 weeks) symptomatic treatment is prescribed for persistent aggression unresponsive to non-pharmacological methods of correction, and when there is a risk of harm caused by the patient to themselves and others. Contraindications: hypersensitivity to the components of the drug, lactase deficiency, lactose intolerance, glucose-galactose malabsorption. The most frequently observed adverse reactions (incidence rate ≥ 10%) were: parkinsonism, headache and insomnia, sedation/somnolence, galactorrhea, gynecomastia, menstrual cycle disorders, amenorrhea, and weight gain.
Chlorpromazine** is recommended for the management of psychomotor agitation, including in patients with intellectual disabilities; the drug is administered intramuscularly at an initial dose of 50 mg. If there is no reduction in the manifestations of verbal and physical aggression, 50 mg of chlorpromazine can be re-administered intramuscularly after 30 minutes [52].
GCR BLEL 2Grade of Recommendation — B, Level of Evidence — 2.
Comment: relieves various types of psychomotor agitation, delusions and hallucinations, fear and anxiety in patients with intellectual disabilities. Cardiovascular system: tachycardia, ECG changes, orthostatic hypotension are possible; visual organ: corneal and lens opacification with visual impairment is possible.
Periciazine** is recommended for the management of psychomotor agitation, anxiety states, aggressive or dangerous impulsive behavior (as an adjunctive drug for the short-term treatment of these conditions). The daily dose is 5–20 mg/day in 2–3 doses [53].
GCR CLEL 5Grade of Recommendation — C (Level of Evidence — 5)
Comment: reduces aggressiveness, excitability, and disinhibition, making it effective for behavioral problems. It has a pronounced sedative effect. Attention should be paid to the occurrence of extrapyramidal disorders and arterial hypotension.
Chlorprothixene is recommended for the management of comorbid disorders in patients with intellectual disabilities, such as anxiety states, agitation, mood lability, and behavioral disorders. The daily dosage is 50–100 mg, divided into 2–3 doses [54].
GCR CLEL 5Grade of Recommendation — C, Level of Evidence — 5
Comment: Very low incidence of extrapyramidal effects (about 1%) and tardive dyskinesia (about 0.05%), does not cause habituation, dependence, or tolerance formation.
3.1. Other treatment
As the number of adults with intellectual disabilities and comorbid psychological difficulties living in the community increases, the demand for effective outpatient psychotherapeutic services also grows. Despite this need, the relevant literature base is lacking [51].
4. Medical Rehabilitation and Sanatorium-Resort Treatment
In intellectual disabilities, we are talking about habilitation measures rather than rehabilitation measures. In particular, D. N. Isaev [5] recommended this specific term, pointing out that in intellectual disabilities, we are initially not restoring functions (rehabilitation), but rather conducting habilitation measures, that is, working with an existing defect. The success of habilitation measures depends, of course, on the severity of the intellectual disability, as well as comorbid psychopathological or neurological disorders that may complicate habilitation.
The goal of habilitation is to improve the quality of life and social functioning of adult patients with intellectual disabilities by overcoming their social alienation, increasing the level of social functioning and sustainable adaptation in the community, as well as choosing optimal ways to develop the most preserved functions. The main tasks of habilitation include increasing the social competence of patients by developing communication skills, stress-coping abilities, and work activities; reducing discrimination and stigma; supporting families, creating and maintaining long-term social support, meeting at least basic needs, which include providing housing, employment, organizing leisure, creating a social network (circle of communication), and increasing the autonomy (independence) of patients.
It is recommended to create individual social and daily life habilitation programs for individuals with intellectual disabilities in order to adapt them to life in society [2, 3, 13].
GCR CLEL 5Grade of Recommendation — C (Level of Evidence — 5)
Comment: socio-household habilitation is the basis for preparing a person with intellectual and mental disorders for independent living. These goals are achieved through psychoeducational work with the family. Trainings conducted with adult patients consolidate adaptation skills to the living, transport, and urban environment, and form ideas about correct behavior in ordinary and extreme situations.
It is recommended to perform rehabilitation using methods of adaptive physical culture and sports to strengthen and maintain health in individuals with intellectual disabilities [2, 3, 13].
GCR CLEL 5Grade of Recommendation — C (Level of Evidence — 5)
Comment: normal motor development contributes to the activation of the psyche and speech, which, in turn, stimulate the formation of motor functions, the connection between the development of fine muscles, hand movements, and speech.
It is recommended to carry out professional rehabilitation (occupational therapy) in the medical-rehabilitation department of a psychoneurological dispensary with the aim of forming work skills necessary in various spheres of life, the ability to adequately apply available technologies and mastered work skills for full communication, social and labor interaction [14].
GCR CLEL 5Grade of Recommendation — C (Level of Evidence — 5).
Comment: professional habilitation is a set of measures aimed at the professional self-determination of individuals with intellectual disabilities, their inclusion in working life, the restoration of their working capacity in working conditions accessible according to their health status, aimed at achieving material independence, self-sufficiency, and the integration of the disabled person into society. Professional rehabilitation includes vocational guidance, vocational training, rational employment, and industrial adaptation.
5. Prevention and Dispensary Observation
Secondary and tertiary prevention measures are advisable for adult patients with intellectual disabilities. Individuals with intellectual disabilities face complex health challenges, some of which differ from those of the general population. Adequate primary healthcare is essential to identify these issues and prevent morbidity and premature death. Physical, behavioral, and mental health issues must be addressed, and primary care providers should pay particular attention to the interplay of biological, psychological, and social factors affecting health, as these interactions can easily be overlooked in adults with intellectual disabilities.
Recommended clinical follow-up by a district psychiatrist (B04.035.001 dispensary examination (evaluation, consultation) by a psychiatrist) [16].
GCR CLEL 5Grade of Recommendation — C (Level of Evidence — 5)
Comment: In accordance with Articles 26 and 27 of the Law of the Russian Federation "On Psychiatric Care and Guarantees of Citizens' Rights in Its Provision," outpatient psychiatric care for individuals with intellectual disabilities is provided, depending on medical indications, in the form of consultative and therapeutic care or clinical follow-up (dispensary observation). Clinical follow-up may be established regardless of the consent of the person suffering from a mental disorder or their legal representative in cases provided for by Part 1 of Article 27 of this Law (clinical follow-up may be established for a person suffering from a chronic and protracted mental disorder with severe, persistent, or frequently exacerbating pathological manifestations) and involves monitoring the person's mental health status through regular examinations by a psychiatrist and the provision of necessary medical and social assistance.
6. Organization of Medical Care
Standards of specialized medical care for adults with intellectual disabilities regulate the types of diagnostic and therapeutic measures, including the number and frequency of specialist examinations, types and nature of examinations, tests, and therapeutic procedures [16].
Indications for hospital admission.
Adults with intellectual disabilities may exhibit the full range of mental disorders, the prevalence of which among them is at least 3 to 4 times higher than in the general population. In addition, individuals with intellectual disabilities are more frequently victims of physical and sexual abuse. Adaptive behavior is always impaired, but in protected social environments with adequate support, this impairment may not be apparent in adults with mild intellectual disabilities. A direct indication for inpatient treatment is forms of intellectual disability complicated by psychotic (catatonic, hallucinatory-delusional, affective, etc.) symptoms. Non-psychotic behavioral disorders are not an indication for inpatient treatment.
Indications for patient discharge from a medical organization
Discharge of patients from a psychiatric inpatient or day care facility should be carried out after the successful completion of psychopharmacological treatment selection and stabilization of their condition. The application of rehabilitation techniques should begin as early as the inpatient/day care stage once acute psychotic symptoms have subsided.
7. Additional Information
The global transition from a medical model of rehabilitation for individuals with mental disorders to a socio-occupational and legal model should also be implemented in Russia. Labor and communication are the leading forms of activity for an adult; therefore, professional and social rehabilitation should be the core of the rehabilitation process, with other aspects grouped around them. Labor activity is the primary socializing mechanism of intervention. Labor serves as a method of correction, promotes the development of practical skills and abilities among individuals with disabilities, and facilitates the accumulation of social experience. As Russian and foreign experience shows, employment is the main factor in the integration of this category of individuals with disabilities into society.
Criteria for Evaluating the Quality of Medical Care
No. | Quality assessment criteria | Evaluation of compliance |
|---|---|---|
1 | An initial psychiatric examination (evaluation, consultation) was performed for all individuals previously diagnosed with "intellectual disability" for evaluation to confirm the diagnosis, clarify complaints and anamnesis. | Yes/No |
2 | A psychological assessment using standard psychological tools (Wechsler test, Raven's test) was performed for all patients with intellectual disabilities upon referral to a medical-psychological-pedagogical commission, a medical-social expertise board, or a military medical commission (adolescents). | Yes/No |
3 | Individual social and life skills rehabilitation programs were created for individuals with intellectual disabilities. | Yes/No |
4 | Clinical follow-up by a district psychiatrist is provided to all individuals with an established diagnosis of "intellectual disability". | Yes/No |
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Appendix A1. Working Group Composition
Makarov Igor Vladimirovich | Doctor of Medical Sciences, Professor, Head of the Department of Child Psychiatry, V.M. Bekhterev National Medical Research Center for Psychiatry and Neurology of the Russian Ministry of Health, Professor at the Department of Psychiatry and Narcology, North-Western State Medical University named after I.I. Mechnikov of the Russian Ministry of Health, Chief freelance pediatric psychiatrist of the Russian Ministry of Health in the Northwestern Federal District, Chairman of the Section of Child Psychiatry of the Russian Society of Psychiatrists. |
|---|---|
Pashkovsky Vladimir Eduardovich | Doctor of Medical Sciences, Associate Professor, Leading Researcher at the Scientific and Organizational Department, V.M. Bekhterev National Medical Research Center for Psychiatry and Neurology of the Russian Ministry of Health, Professor at the Department of Psychiatry and Narcology, Saint Petersburg State University of the Government of the Russian Federation. Member of the Section of Child Psychiatry of the Russian Society of Psychiatrists. |
Kravchenko Ilya Vladimirovich | Candidate of Medical Sciences, Senior Researcher at the Department of Child Psychiatry, V.M. Bekhterev National Medical Research Center for Psychiatry and Neurology of the Russian Ministry of Health. |
Appendix A2. Methodology for Developing Clinical Guidelines
Target audience of these clinical guidelines:
Specialists with higher medical education in the following specialties:
Psychiatry (psychiatrists, district psychiatrists) Specialists with higher professional (non-medical) education:
Medical psychologists.
Table 1. Scale for grading levels of evidence (LE) for diagnostic methods (diagnostic interventions)
LoE | Definition |
|---|---|
1 | Systematic reviews of studies with reference standard control or systematic review of RCTs using meta-analysis |
2 | Individual studies controlled by a reference method, or individual RCTs and systematic reviews of studies of any design except randomized clinical trials, using meta-analysis |
3 | Studies without consecutive reference standard control or studies with a reference standard not independent of the test method, or non-randomized comparative studies, including cohort studies |
4 | Non-comparative studies, case report |
5 | Only justification of mechanism of action or expert opinion is available |
Table 2. Scale for assessing levels of evidence certainty (LEC) for methods of prevention, treatment, and medical rehabilitation, including those based on natural therapeutic factors (preventive, therapeutic, and rehabilitative interventions)
LoE | Definition |
|---|---|
1 | Systematic review of RCTs incorporating meta-analysis |
2 | Individual RCTs and systematic reviews of studies of any design except RCTs incorporating meta-analysis |
3 | Non-randomized comparative studies, including cohort studies |
4 | Non-comparative studies, case reports or case series, case-control studies |
5 | Only justification of the mechanism of action of the intervention (preclinical studies) or expert opinion is available |
Table 3. Scale for grading levels of recommendation (LoR) for prevention, diagnostic, treatment, and medical rehabilitation methods, including those based on natural therapeutic factors (preventive, diagnostic, therapeutic, and rehabilitative interventions)
GoR | Definition |
|---|---|
A | Strong recommendation (all considered efficacy criteria (outcomes) are important, all studies are of high or acceptable methodological quality, and their conclusions on the outcomes of interest are consistent) |
B | Conditional recommendation (not all considered efficacy criteria (outcomes) are important, not all studies are of high or acceptable methodological quality, and/or their conclusions on the outcomes of interest are inconsistent) |
C | Weak recommendation (lack of adequate quality evidence (all considered efficacy criteria (outcomes) are unimportant, all studies are of low methodological quality, and their conclusions on the outcomes of interest are inconsistent) |
Appendix A3. Reference Materials
International Statistical Classification of Diseases and Related Health Problems, 10th Revision (ICD-10)
Criteria for Evaluating the Quality of Medical Care
Order of the Russian Ministry of Health No. 203n dated May 10, 2017
"On approval of criteria for assessing the quality of medical care."
Federal Law No. 323-FZ dated November 21, 2011, "On the Basics of Protecting the Health of Citizens in the Russian Federation" (Collected Legislation of the Russian Federation, 2011, No. 48, Art. 6724);
Order of the Russian Ministry of Health No. 205n dated May 2, 2023 (as amended on December 4, 2023) "On approval of the Nomenclature of Positions of Medical and Pharmaceutical Workers" (Registered with the Ministry of Justice of Russia on June 1, 2023, No. 73664).
Order of the Russian Ministry of Health No. 103n dated February 28, 2019, "On approval of the procedure and timelines for the development of clinical guidelines, their revision, the standard template of clinical guidelines, and requirements for their structure, composition, and scientific validity of the information included in the clinical guidelines."
Order of the Russian Ministry of Health No. 804n dated October 13, 2017, "On approval of the nomenclature of medical services."
Order of the Ministry of Health and Social Development of the Russian Federation "On the Procedure for the Use of Medicinal Products in Patients on Vital Indications" No. 494 dated August 9, 2005.
Appendix B. Physician Action Algorithms
Appendix C. Patient Information
Parents or legal guardians of a patient with intellectual disability should be explained in an accessible form the nature, manifestations, diagnostic methods, and intervention approaches for this condition. Intellectual disability is a group of conditions caused by congenital or early-acquired mental underdevelopment with pronounced deficits in cognitive abilities and adaptive behavior, which hinders or makes completely impossible the individual's adequate social functioning. There is no direct treatment for intellectual disability. However, individuals with intellectual disability may exhibit the full range of psychiatric disorders, the prevalence of which is 3–4 times higher than in the general population. The recommended pharmacotherapy is aimed at halting these disorders. Methods with proven efficacy and safety include continuous habilitation based on behavioral, psychological, and educational approaches. The effectiveness of social functioning is ensured by vocational habilitation and training in simple professions (shoemaking, sewing, bookbinding, etc.). Medical habilitation measures are carried out in medical rehabilitation departments of psychoneurological dispensaries, and for disabled persons, in institutions of the Ministry of Labor and Social Protection.
Appendix G. Assessment Scales, Questionnaires, and Other Evaluation Tools
Appendix G1
Russian title: Wechsler Adult Intelligence Scale (WAIS)
Original title: Wechsler Adult Intelligence Scale, WAIS
Source (official developer website):
Wechsler Adult Intelligence Scale: Diagnosis of Intelligence Structure (Adult Version): Methodological Guide / Yu. I. Filimonenko, V. I. Timofeev. - Saint Petersburg: SE "IMATON", 2002. - 112 p. (IMATON. Professional Psychological Tools) [20]
www.imaton.com
type: rating scale
Purpose: assessment of intelligence structure in children aged 7 to 69 years.
Source (official developer website, validation publication): Wechsler D. Manual for the Wechsler adult intelligence scale. – New York, 1955.
Type (underline):
rating scale
index
questionnaire
other (specify):
Purpose: the technique is designed to assess basic intellectual functions that ensure successful behavior in various situations and effectiveness in various types of activities.
Content: full methodology [20]
Key: all scoring tables [20]
Explanation: the test is distributed by IMATON: https://www.imaton.com/catalog/39/
Appendix G2
Russian title: Raven's Progressive Matrices
Original title: The Raven Progressive Matrices
Source (official developer website):
Raven J., Raven J.C., Court J.H. Manual for Raven's Progressive Matrices and Vocabulary Scales. Section 3. Standard Progressive Matrices (including Parallel and Plus versions). — "Cogito-Center". — M., 2012. [15].
www.imaton.com
Purpose: designed to differentiate subjects by their level of intellectual development
Source (official developer website, validation publication): Raven, J. (1981). Manual for Raven's Progressive Matrices and Vocabulary Scales. Research Supplement No.1: The 1979 British Standardisation of the Standard Progressive Matrices and Mill Hill Vocabulary Scales, Together With Comparative Data From Earlier Studies in the UK, US, Canada, Germany and Ireland. San Antonio, Texas: Harcourt Assessment
Raven J., Raven J.C., Court J.H. Manual for Raven's Progressive Matrices and Vocabulary Scales. Section 3. Standard Progressive Matrices (including Parallel and Plus versions). — "Cogito-Center". — M., 2012.
Type (underline):
rating scale
index
questionnaire
other (specify):
Purpose: designed to measure the general intelligence factor (Spearman's g factor). J. Raven's test evaluates the ability to perceive abstract forms, identify their relationships, and make logical decisions in the shortest possible time.
Content: full methodology [15]
Key: all scoring tables [15]
Explanation: the test is distributed by IMATON: https://imaton.com/catalog/rukovodstvo-razdel-3-standartnye-progressivnye-matricy-ravena/