Approved by the decree №48 dated 19th of December 2012
At the Collegium of the Ministry of Health of Azerbaijan Republic
CLINICAL PROTOCOLS FOR DETECTION OF
CHILDREN WITH DISABILITIES
Baku – 2013
Clinic protocols editor:
J.MammadovDirector of the Public Health and Health Reforms Center of TheMinistry of Health, M.D.
Clinic protocols designers:
N. GuliyevHead pediatrician of the Ministry of Health, Director of the Scientific-Research Institution of Pediatrics after K.T. Farajova, professor, PhD
R. Rzayev Head pediatric neurologist of the Ministry of Health, docent of Neurology and Medical genetics department of the Medical University of Azerbaijan Republic, M.D.
S. Badalova Doctor of the Children’s Neurological Clinic, neurologist-consultant of the Children’s Healthy Future Organization, M.D.
A.Mammadbeyli Assistant of Neurology and Medical genetics department of the Medical University of Azerbaijan Republic, M.D.
N. AbdullayevaEarly Intervention project manager at the United Aid for Azerbaijan organization, President of the Azerbaijan Physiotherapy association
Z. NajafovaDoctor of the Medical Baku Base College № 2, medical consultant of the “provision of living conditions for families of children from the vulnerable layer of society” project of United Aid for Azerbaijan organization
S. IsmayilovaHead of Medical Quality Control Department of the Public Health and Health Reforms Center of The Ministry of Health
Reviewers:
R. ShiraliyevaHead of neurology department of Azerbaijan State Doctors Improvement Institute, professor, PhD
Z. AliyevProfessor of Neurology and Medical genetics department of the Medical University of Azerbaijan Republic, PhD
Head and Founder of United Aid for Azerbaijan Organization Gwendolyn Burchell participated in the preparation of these protocols as an expert.
Reliability degree of the proofs and types of scientific research
Reliability degree of the evidences / Sources of the proofs(types of research)
Ia / Proofs gathered from meta-analysis , systematic reviews or randomized clinical trials (RCT)
Ib / Proofs gathered from at least one RCT
II a / Proofs gathered from at least one properly planned, supervised and not randomized research
II b / Proofs gathered from at least one properly planned quasi-experimental research
III / Description of proofs gathered from research (for example, comparative, correlational research, different case studies)
IV / Proofs are based on the reviews or clinical experience of the experts
Reliability level of the recommendation scale
Reliability level of recommendations / Reliability level of the proofs that recommendations are based onA / High quality meta-analysis of RCT, systematic reviews or large-scale RCT with results that are attributable to population and with a very low probability of an error (++).
Reliability level of the proofs is Ia.
B / High quality (++) review of Cohort or clinical case control type researches; Cohort or clinical case control type researches with a low (+) probability of a systematic error;RCT with results that are attributable to population and with a very low probability of a systematic error (++ or +).
Reliability level of the proofs is Ia or IIa.
C / Cohort or clinical case control type, supervised and not randomized research with results that are attributable to population and with a very low probability of a systematic error (+); RCT with results that are not attributable to population and with a very low or low probability of a systematic error (++ or +).
Reliability level of the proofs is IIb
D / Description of series of clinical cases, not supervised research, reviews of the experts.
Is an indicator showing the lack of high quality proofs.
Reliability level of the proofs is III and IV.
List of abbreviations
CH Congenital hypothyroidism
APArterial blood pressure
UNUnited Nations Organization
EEGElectroencephalogram
PKUPhenylketonuria
ICD-10International Statistical Classification of Diseases and Related Health Problems
HIV Human immunodeficiency virus
IQIntelligence quotient
CTComputer tomography
CISCommonwealth of Independent States
MRIMagnetic resonance tomography
CNS Central nervous system
MHMinistry of Health
CPCerebral palsy
USSUltrasound scan
WHOWorld Health Organization
Explanatory dictionary
Healthy newborn child - child who has good life skills and doeees not need any medical intervention after birth.
Disabled - person, who needs social support and protection, his activities are limited as a result of physical and mental delays that occurred after birth, illness or injuries.
Child under the age of 18 with limited physical capacity - child in need of social support and protection, his activities are limited due to various mental, emotional, physical delays that cause deterioration in general development of the organism. Limited life skills reflect total or partial loss of a child to self support, move, direct, communicate; control his behavior, as well as to have education and employment opportunities.
Rehabilitation (lat. "rehabilitatio" - rehabilitation), according to WHO - is a complex efficient usage of medical, social, educational and labor in order to help individual maximum possibly adapt to daily life activities.
Medical rehabilitation - system, that uses medical or other methods in order to rehabilitate functional capacity that were impaired after birth, or as a result of disease or trauma.
Social rehabilitation - system, which ensures measures to improve life quality of disabled and children with limited physical capacity ,to create opportunities for them to participate in public life equally with other citizens. Social protection of disabled and children with limited physical capacity - system of economic, social and legal state guarantee system which ensures elimination and compensation of restrictions in life activities of disabled and children with limited physical capacity; creation of equal opportunities for them in the society.
Rehabilitation of disabled or children with limited physical capacity - system of medical, psychological ,educational, social ,economic, sport and other measures to eliminate or compensate restrictions in life activities, which were results of continuous deterioration of body's function. The main goal of rehabilitation is to provide social adaptation and social status rehabilitation for disabled and children with limited physical capacity.
Habilitation - (lat. " habilitatio" - comfortable, adopted) - is a complex of measures aimed to develop and restore functional systems of organism, damaged as a result of illness or injuries. Habilitation is initial formation of skills.
Child with development delay - this group consists of children with atypical behavior, or children who have disparities in biological and psychological normative for children of certain age with learning, motor, emotional, adaptation, speech, cognitive, communicative delays. Stage of delays is measured with development assessment means.
Protocol is developed for pediatricians, neonatologists, family physicians, neurologists and medical personnel of children departments.
The patient group: children under the age of 6.
Protocol is aimed to provide medicine based methodological recommendations that will help to discover development delays in children in the beginning, to prevent or to reduce the extent of disability, thereby improving quality of life for children.
GENERAL PROVISIONS
More than one million children in CIS and Eastern European countries live in institutions. The majority of them have been abandoned right after birth and most of them have developmental delays. Psycho-physical delays in children are the most common reasons for parents to abandon them.
Ratified in Azerbaijan Republic in 1992 UN Convention on the Rights of the Children states that children should never be placed in the institutions because of developmental delays. The primary duty of the society is to provide opportunities for disabled people to participate in sociallife and to eliminate obstacles in protection of their rights.
Thus, early detection of development delays in children and supporting their families are priority activities among health ,education and social protection areas all over the world. In the early 70s of last century, significant progress has been made in this direction. As a result, so - called "Early Intervention" activities for children with developmental delays and their families turned into a major social project.
Early intervention is a program developed to detect the risk of developmental delay as soon as possible and to provide psychological- medical- pedagogical, social and etc. support for children and their families.
Early childhood is a very important period. During this period child rapidly develops cognitive, understanding, speech, personality formation, perception skills. Early adequate help will compensate psycho-physical development disorders and thus eliminate the secondary ones. At the same time, modern scientific research shows that first six and especially first three years of child's life are characterized by frequent critical periods.
Critical period - is a period when special incentives and sensitive stimulationsare required for the correct development of nervous system, brain neurons and synapses. If there is no stimulation, skills related to neurons do not develop or have significant delays.
Delays are usually permanent and will not be restored after intervention. Therefore, the sooner you intervene, the more effective it can be for a child (A) 12, because:
when the child grows, the "plasticity" of his/her organism becomes more limited
age related skills formation deteriorates
Social needs of the individual increases
Given the following: early intervention must start from the first days or weeks of child's life, and as a result:
delays in psycho - motor development of the child are more effectively compensated
secondary development delays are weaker or completely prevented
Organization of early intervention programs, integrated preschool and family support services cost less for the government than institutionalization process for one child.
Eliminates isolation of a child from the society and family stress
Thus, early intervention system is aimed to resolve following issues:
early detection and diagnosis of psycho- physical developmental delays of children
Not determining the diagnosis in time may result in following:
treatment delay
delay in habilitation and rehabilitation measures
limitation of life activities of an individual
After diagnosing developmental delay, the intervention and parents’ educational process should be started as soon as possible. After the birth and during his life educational opportunities must be created for the child. Procedures for early detection of developmental delays should be organized in the form of screening tests for all children.
Screening - is one of the major fields in medical prophylaxis. Detection of the disease via screening saves country's budget and helps prevent children disability.(C) 12.
Phenylketonuria ( FKU)(A)15, congenital hypothyroidism(AH)(A)13 and audiologic screening programs can be brought as examples of neonatal screening.
Epidemiology
According to WHO, 15 % of world's population, i.e. more than 1 billion people (according to research conducted in 2010) have some form of disability. This indicator is higher than the result of the research conducted by WHO in 1970. The results of research on children disability is shown in the “Global impact of diseases" report. According to this research 95 million (5.1%) children have disability, 13 million(0.7%) of them have severe forms of disability.
According to the Ministry of Health of Azerbaijan Republic comparative indicators of age categories of children disability are given in Table 1.
Pathology / Age category0-5 years
2010 / 0-5 years
2011 / 1,5-3 years
2010 / 1,5-3 years
2011 / 4-6
years
2010 / 4-6 years
2011
Children with no hearing abilities / 16 / 14 / 71 / 60 / 144 / 168
Children with weak hearing abilities / 19 / 18 / 118 / 103 / 285 / 290
Children with no eyesight / 26 / 6 / 21 / 38 / 58 / 60
Children with weak eyesight / 39 / 43 / 371 / 233 / 1096 / 1036
Children with mental development delay / 39 / 51 / 297 / 272 / 691 / 731
Children with speech delay / 34 / 41 / 514 / 451 / 804 / 854
CP and Poliomyelitis / 97 / 90 / 314 / 326 / 621 / 726
Children with musculoskeletal system disorders / 4 / 5 / 94 / 95 / 166 / 187
As seen from the table, the detection of listed pathologies occurs in older age categories.
Down syndrome: 296 children from children aged 0-13 in 2010, in 2011 - 336 children are registered in dispensary; in the end of 2011 42 children from 0-1 age category are registered.
Psycho- neurological disorders in 2010 are observed in: 30-40% of newborns, 118,5 out of 10.000 of children from 0-18 age category, 22,9 out of 10 000 children with limited physical capacity,8 out of 10 000 people with new psycho- neurology related disability cases.
Early intervention is necessary for children with congenital or later acquired developmental disorders from socially insufficient families (refugees, single-parent, low-income, homeless, etc.)
İCD -10 QUALİFİCATİON
Z00General examination of people with no diagnosis and complaints.
Z00.0General medical examination
Z00.1Medical examination of the current status of children’s health
Risk factors
I. Medical factors:
1. Heredity or genetic inclination (genetic syndromes and chromosomal aberration, degenerative diseases of the nervous system, etc.)
2. Antenatal : mother's age is less than 18 or more than 35 at the time of first pregnancy, unsatisfactory pregnancy period( severe case of toxicosis, risk of pregnancy disruption, uterine infections), fast water break(long-term anhydrous period) and etc.
3. Intranatal and postnatal: unsatisfactory delivery, birth traumas, hypoxia during delivery, preterm birth( especially fetus gestational age - less than 30 weeks 10), Low indicators on Apgar score( less than 3 points in 5 minutes10),low birth weight (uterine hypotrophy), asphyxia, hemolytic disease of the newborn and etc.
4. Child diseases: rickets, iron deficiency anemia, HIV,genetic diseases and metabolic diseases, CNS diseases(skull-brain trauma, neuroinfection, intracranial pressure, hydrocephaly, malformations of the brain, paralysis of various etilogies, epilepsy and etc.), anomalies in the development of other organs and systems.
II. Social factors:
1. Family problems : lack of attention from parents, improperupbringing, violence, parental alchohol and drug abuse, confclicts between children and parents, undesirable pregnancy and etc. (D)10
2. Regugees, many children, and other families from social risk group (D)10
3.Low educational level of parents and etc. (D) 10
III Environmental factors:
1. Industrial production of toxic products
2. Radiation
3. Noises and etc.
Diagnostics
The purpose of early examination:
Early identification of children with special needs ( Table 2)
To provide optimal development of children with special needs( referring them to different services ( Appendix 6)
Table 2
Detection stages of children with development delays
Stages / Places to implement / PurposeI stage / Women consultation centers / Antenatal diagnostic1,3
Social anamnesis
II stage / Maternity hospital / Screening based on the following nosologies:
Phenulketonuria (A)15
Congenital Hypothyroidism ( (A)13
Detection of congenital developmental delays
III stage / Polyclinic in the residental area
Hospitals
Specialized institutions / Child observation and Screening process
Detection of genetic syndroms and developmental delays(Vision (A)8,hearing (B)8
Social ananmnesis
Dynamic observation during antenatal period
1. Collection of anamnesis
Health condition of pregnant woman - nutrition, diseases, chnoric illnesses, previous pregnancy,birth, etc.
Pregnancy period - pathalogical bleeding, diseases and contacts with infectious patients during pregnancy, alchohol and drug use, smoking and etc.
Family anamnesis
Social anamnesis
2. Setting up a counseling service and guidance on the issues that parents are concerned about.
3. Pregnancy bases on relevant nation clinical protocol (" Antenatal care for women with physiological pregnancy"[1], " Bleeding during pregnancy"[2], "Hypertension situations during pregnancy"[3])
Dynamic observation of children in the policlinics
After birth children should be registered in the polyclinics of their residential area. Dynamic observation of children is carried out every month during 1-st year, every 3 month during 2nd year, and 2 times per year until the age of six. Screening time can be brought into compliance with the time of vaccines and preventive inspections at the polyclinic. This adjustment is very expedient regarding developmental milestones, as well as it helps medical staff and parents to save some time.
During medical examination pediatrician is required to:
- Collect anamnesis (history). Primary anamnesis is collected at the first visit to the doctor. Anamnesis is completed by the additional data collected during the future visits.
- Instruct the parents: training on feeding of a child, safety and prevention of injuries, development and behavior of a child, hygienic rules, relations between parent and children and so on must be provided. A survey on the issues that parents are concerned about and their explanations must be carried out.
- Provide physical examination. During each visit a fully objective examination must be done. Depending on the age of a child special attention must be paid on specific organ systems.
Examinations carried out:
Height and weight must be measured during every visit (appendix 2).
Up to the age of 1 the head size of a child must be measured during every visit (appendix 2).
In case of doctor’s appointment the arterial blood pressure must be measured (appendix 4).
4. Laboratory tests are conducted with a choice of doctor. Frequency of general and bacteriological examination of urine, blood and feces is determined on an individual basis.
5. Vaccines (see Appendix 3).
6. Mantua test is tested once every year for all healthy children aged 1-18.
7. Psycho-neurological development of the child should be observed. Review of reflexes and (Appendix 1) child development is based on the screening scale. (Table 4).
Observation for early intervention is based on childhood periods listed below
Childhood periods:
Neonatal (newborn) - 0 - 28 days from the date of birth
* Infancy - 29 day to 1 year
* Early Childhood - 1 year to 3 years
* Pre- school - 3 years - 6 years
Appeals to clinic throughout neonatal period
According to the information given from the clinic, every newborn child is overseenthroughout the neonatal period. Oversightis provided by pediatrician and nurse. Within 3 days after leaving the clinic and on the 10th day child is visited by doctor and nurse. If there were no changes identified in the child’s and mother’s health (taking into account physical health and social adaptation in the changed conditions), at 1 month child should be brought to the policlinic in order to be observed by the pediatrician. After that such visits must be provided once a month until the age of 1. If the psycho-motoric development is meeting the age standards the visits must follow in accordance withthe calendar. If by the results of examination and by any of the parameters a child can be put into a risk group, the child will be additionally invited for further observation and, if necessary, for examination and medical treatment in the policlinic.
If the child is brought to the policlinic the duties of pediatrician are:
1.Collection of anamnesis.
2.Taking Information about previous birth, mother's age, blood type and rhesus affiliation, duration of pregnancy, childbirth process, tear time of membranes that surround fetus, bloody secretions, assessment of the newborn according to Apgar scale, the vaccines, any resuscitation cases and etc. from medical card available in the clinic.