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Early intervention in developmental delay
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     Government Institute for Mentally Retarded Children (GIMRC), Sector 32, Chandigarh, India

    Abstract

    Objectives : To establish the socio-demographic and clinical profile of children attending Early Intervention Program (EIP). Methods : Retrospective analysis of case records of 100 consecutive children examined from July 2002 to June 2004. Data regarding socio-demographic variables, clinical profile, locomotor, speech and audiology functions were recorded. Data is described in terms of frequency and mean (with SD). Results : Mean age of these children was 4.0 ± 1.4 years. 70% were male and a similar percentage hailed from urban areas. 88% were mentally retarded with mean IQ of 50 ± 24.3. Cerebral Palsy was seen in 50% of the children, learning disorder in 24%, Attention Deficit Hyperactivity Disorder (ADHD) in 12% and autism in 4%. 25% of children suffered from epilepsy and 66% were unable to communicate verbally. 21% of children had strong evidence of genetic disorders. An etiological diagnosis could not be made in 31% of children. Conclusions : Awareness of developmental delay as well as of possible interventions is low in India. Speech delay is the only delay which is considered important by parents. Active involvement and early referrals from pediatricians, obstetricians and other specialists is suggested.

    Keywords: Early intervention; Developmental delay; Speech; Locomotor; Mental retardation; Cerebral palsy

    Early intervention has been defined as a systematic and planned effort to promote development through a series of manipulations of environmental or experimental factors initiated during the first five years of life.[1] However as per guidelines of IDEA (Individuals with Disabilities Education Act) of United States, "Early intervention services are designed to meet the developmental needs of children, from birth to three years of age, who have a delay in physical, cognitive, communicative, social, emotional or adaptive development or have a diagnosed condition that has a high probability of resulting in developmental delay".[2]

    In Early Intervention Program (EIP), the primary prevention level is to reduce the occurrence of developmental disability through reduction of risk factors such as low birth weight, malnutrition and family awareness that child development can be influenced by their efforts. At a secondary prevention level, the goal is to reduce the extent of manifested childhood disability and shorten its duration. Infant stimulation and remediation programs operate at this level. In tertiary prevention, the aim is to prevent or reduce complications of disability (physical and behavioral) that lead to a need for institutionalization.[3] The program should also enhance the family's understanding of its infant's limitations, strengths and needs, and promote the family's ability to advocate for its infant.

    For effective intervention, a multidisciplinary team approach has been advocated, the composition of which may vary depending on the available resources.

    The current study was undertaken with the aim of establishing the socio-demographic profiles and the pattern of clinical features in children attending EIP. The study also sought to assess the profile and expectations of people who attended the clinic with the long term objective of modifying the program as per their needs.

    Materials and Methods

    The study was conducted at the Government Institute for Mentally Retarded Children (GIMRC), Chandigarh. This is the only government institute for mentally retarded children in the North Indian states of Himachal Pradesh, Haryana, Punjab and Union Territory of Chandigarh. In addition to providing education and vocational training for mentally retarded children, it also offers residential facility and home-based programs for such children.

    The study was a retrospective analysis of the records of 100 consecutive children who attended the EIP at GIMRC from 2002 to 2004.

    In the EIP at GIMRC, the multidisciplinary team consisting of a psychiatrist, clinical psychologist, physio-occupational therapist, speech therapist, social worker and a special educator evaluated children below the age of 6 years using a structured clinical performa. The various variables that were evaluated included:

    1. Socio-demographic Characteristics: Age, sex, family income, family type, locality, reason for visit, family expectations and family awareness

    2. Clinical Profile: Place of delivery, term of delivery, type of delivery, postnatal complications, mile stones, associated medical/ surgical problems, diagnostic possibilities, etiological diagnosis, behavioral problems and intelligence quotient

    3. Locomotor functions: Mile stones, oral functions, muscle power, muscle tone and range of movement at various joints

    4. Speech and Audiology Functions: Speech and language development; structure and function of the speech system; mode of communication, verbal expression, verbal comprehension, non-verbal expression, non-verbal comprehension and intelligibility of speech.

    Whenever required, referrals were made to other specialists including a pediatrician, otorhinolaryngeologist, ophthalmologist and neurologist.

    In the first counselling session, the concept of mental retardation, its possible causes and outcomes were discussed in an interactive group setting. Misconceptions and queries were dealt with and any plans regarding next child were discussed in detail. In the second counselling session, which was individualized for each child, a therapeutic plan was formulated in consultation with the parents. Parents were also informed about the welfare facilities provided by the government for such children. They were also educated on the legal provision relating to mental retardation and related disabilities. Thereafter follow up visits were continued with the assigned therapists.

    Descriptive statistics: Descriptive statistics were used to describe the demographic data and clinical profile of the children.

    Results

    Majority of the 100 children were male (71%), hailed from urban locality (70%) and had a family income of less than Rs 3500/- per month (42%). Mean age (SD) of the children was 4.0 (1.4) years. The sociodemographic profile of the children is given in table1. Majority of the children were delivered via normal vaginal delivery (55%), at full term (68%) and in a hospital (60%). There was delayed birth cry in more than 1/3rd of the children (37%). The clinical profile is described in table2.

    On detailed assessment, 88% of the children were mentally retarded and the mean IQ (± SD) of the studied group was 50(± 24.3). 21% children showed strong evidence of genetic disorders, mostly Down's syndrome. Details regarding etiology and diagnosis are enumerated in table3.

    As shown in table4, Cerebral Palsy was seen in half of the children. About 30% children were unable to crawl or stand with support and 43% were unable to walk. Among oro-motor functions, biting and chewing were absent in 18- 19 % children.

    Vocalization, babbling, first word and first sentence were absent in 1%, 11%, 36% and 53% respectively. Other speech functions are described in table5.

    Discussion

    Our findings showed that the mean age of the children attending the clinic was about 4 years, which indicates that majority of the children are either referred late or that parents try out all other options before bringing over the child to EIP. In a study by Bailey et al conducted in North Carolina, USA, children were referred for early intervention at an average age of 1.2 years.[4] But in other studies the mean age of children reporting in EI clinics was between 3-4 years.[5],[6] It has been reported that pediatricians more often referred children, who were more than 3 years of age or children with more severe disabilities, for special services. It may be possible that pediatricians rarely use developmental or behavioral screening tests, preferring to rely more on developmental surveillance in the context of normal health care provision.[4] Stigma associated with seeking help from a special institute could be another reason of delay in seeking help.

    Higher percentage of males in the population may be explained by the tendency of the families to nurture a male child more as compared to the female child expecting financial contributions from the male children once they grow up. Despite the lack of any similar facility in the surrounding areas, only 30% of children came from rural areas. This finding is in accordance with a metanalysis conducted by Ganguli who found that mental retardation prevails more in the urban areas than rural areas with a ratio of 243/100.[7] Lack of awareness is also a possible reason for the lesser number of patients from villages.

    Reason for attending EIP and expectation from the visit was treatment in most cases (49%). Treatment was mostly sought for inability to speak. 12% of the families perceived mental retardation as curable. The findings show that families need to be educated about the realistic expectations so that the resources are not wasted on non-effective interventions.

    Only 9% families were aware of the provision of disability certification and various welfare facilities provided by the central and state governments. It again emphasizes the need for dissemination of information and awareness. For spreading awareness, networking with ongoing national programs (Integrated Child Development Scheme, Family planning, etc.) is very important. Anganwari workers, multipurpose health workers, Auxiliary Nurse Midwives and Non Government Organizations working in the community need to be educated.

    In etiological diagnosis complications of labor and genetic causes were equally common. In another EI study with different methodology reporting of peri -natal complications was similar to the current study.[6] Pregnancy related complications and neonatal problems were reported less often. Cause was not obvious in 31%cases, which is in keeping with earlier reports on etiological diagnosis in mental retardation.[8],[9]

    88% of the assessed children were mentally retarded, 50% had cerebral palsy, 25% had epilepsy and 26% had other co-morbid physical disorders. Learning disorders, ADHD, behavioral problems (mainly temper tantrums and disobedience) and autism were seen in 24%, 12%, 10% and 4% children respectively. This differs from co-morbidities as reported in autistic children by Kalra.[10] A comprehensive management of developmental delay would thus necessarily encompass an effective and single window management of physical as well as psychiatric disorders.

    Among children with cerebral palsy, spastic quadriplegia was seen in 54% which is in accordance with another study in Northern India.[11] In the current study hemiplegia accounted for 28% cases which is similar to most other studies.[12] Spastic diplegia was seen in 16% children with significantly greater lower limb involvement. As per Ratey and Dymek, spastic diplegia accounts for10-33% cases and impairment in locomotor functions is significantly more than in manipulative skills.[13]

    In majority of the children, age of acquiring speech functions was delayed even though structure and function of speech mechanism was relatively preserved. However, only 28%children had a verbal mode of communication. 22% children had no mode of communication. All these findings may indicate towards the need for intensive speech therapy and greater stimulation for speech functions.

    One of the limitations of the current study was its retrospective nature. Secondly, assessment of children was only clinical and no additional scales designed to detect various aspects of developmental delay were used. Thirdly, the current study was not empowered to detect the long term effects of EIP which would have required a follow up of much longer duration.

    In the EIP at GIMRC efforts are being made at primary, secondary as well as tertiary levels of prevention. At the primary level, people attending the clinic are educated regarding the risk factors and precautions they must undertake while planning for the next child. But size of population thus made aware is too small. Moreover, cases where any complication has occurred are not being taken up as high-risk children. There is a need for involvement of obstetricians so that high-risk cases are identified at the time of delivery and they are referred to EIP. At the secondary level, referrals are usually late, as shown from mean age, which is 4 years. There is a need for active involvement and early referrals from pediatricians. Tertiary prevention is the one currently being done most effectively where in disability is identified and the child is included in the program depending upon his/her potentials.

    Nevertheless, findings of this study are important to create and upgrade Early Intervention facilities for children with developmental delay. The study may also serve as a guide mark for establishment of such services in other parts of the country for children who have a delayed development.

    Conclusion

    There is a felt need for dissemination of information and awareness of information regarding developmental delay, mental retardation as well as welfare facilities provided by the government. Pediatricians and other specialists have a major role in identifying children at risk and referring them for intervention at the earliest.

    References

    1. Guralnick MJ and Bennet FC. A framework for early intervention. In The Effectiveness of Early Intervention for at Risk and Handicapped Children. Guralnick MJ and Bennet FC (Eds.). Orlando, Academic Press. 1987; 3-29.

    2. US Department of Education. To assure the free appropriate public education of all children with disabilities (Individuals with Disabilities Education Act, Section 618). Twenty-third Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act 2001. Accessed from http://www.ed.gov/about/reports/annual/osep/2001/index.html on May 19, 2005.

    3. Simeonsson RJ. Early Prevention of childhood disability in developing countries. Int J Rehabil Res 1991; 14(1): 1-12.

    4. Bailey Jr. DB, Hebbeler K, Scarborough A, Spiker D and Mallik S. First experiences with Early Intervention: A national perspective. Pediatrics 2004; 113(4): 887-896.

    5. Jayaranza S, Bhat JS. Epidemiological Profile of Children with Autism in Comparison with other Communicatively Challenged children Attending Early Intervention Centre. Indian Journal of Community Medicine 2004; 29 (3): 145-146.

    6. Juneja M, Mukherjee SB, Sharma S. A descriptive Hospital Based study of children with Autism. Pediatrics 2005; 42 (5): 453-458.

    7. Ganguli HC. Epidemiological findings on prevalence of mental disorders in India. Indian J Psychiatry 2000; 42(1): 14-20.

    8. Chadda RK. Mental retardation. In Textbook of Postgraduate Psychiatry. Second Edition. Vyas JN and Ahuja N eds. Jaypee Brothers Medical Publishers, 1999; 572-585.

    9. Fox MA. Mental retardation. In An Introduction to Neurodevelopmental disorders of children. First Edition. Fox MA (Ed.). New Delhi. The National Trust 2003; 125-163.

    10. Kalra V, Seth R, Sapra S. Autism-experiences in a tertiary care hospital. Indian J Pediatr 2005; 72 (3): 227-230.

    11. Singhi PD, Ray M, Suri G. Clinical spectrum of cerebral palsy in north India-an analysis of 1,000 cases. J Trop Pediatr 2002 48(3): 162-166.

    12. Sankar C, Mundkur N. Cerebral Palsy- Definition, Classification, Etiology and Early Diagnosis. Indian J Pediatr 2005; 72 (10): 865-868.

    13. Ratey JJ and Dymek MP. Neuropsychiatry of mental retardation and Cerebral Palsy. In Comprehensive Neuropsychiatry . Fogel BS, Schiffer RB, Rao SM, eds. Baltimore. Williams and Wilkins 1996; 549-569.(Kaur Paramleen, Chavan BS)