|Year : 2022 | Volume
| Issue : 3 | Page : 34-39
Early Neurodevelopmental Intervention: A Hospital-Based Observational Study
Neerja Thergaonkar1, Ranjeet W Thergaonkar2, Manisha Thakur3, Bala Nagamani4, Vivek Bhat3
1 Consultant Rehabilitation Psychologist, Department of Pediatrics, Omni RK Hospital, Visakhapatnam, Andhra Pradesh, India
2 Department of Pediatrics, INHS Asvini, Mumbai, Maharashtra, India
3 Department of Pediatrics, INHS Kalyani, Visakhapatnam, Andhra Pradesh, India
4 Consultant Physiotherapist, Department of Surgery, INHS Kalyani, Visakhapatnam, Andhra Pradesh, India
|Date of Submission||13-Apr-2021|
|Date of Decision||19-Jun-2021|
|Date of Acceptance||01-Jul-2021|
|Date of Web Publication||01-Jul-2022|
Surg Capt (Dr) Vivek Bhat
Department of Pediatrics, INHS Kalyani, Gandhigram, Visakhapatnam - 530 005, Andhra Pradesh
Source of Support: None, Conflict of Interest: None
Introduction: Early intervention programs for developmental disabilities are often not available in India due to non-availability of resources. The objective of this prospective observational study was to measure the efficacy of an early intervention program for neurodevelopmental disabilities in a mid-sized hospital. Methods: The study enrolled infants and toddlers aged 1-30 months who were at risk for, suspected to have or diagnosed with developmental delay. Infants and toddlers with medical instability and profound developmental delay at first assessment were excluded. The patients were tested using Developmental Assessment Scale for Indian Infants (DASII) at first visit after which individualized intervention plans based on modules devised by National Institute for Empowerment of Persons with Intellectual Disabilities (NIEPID) were instituted. Reassessment using DASII was performed during subsequent visits. Results: Twenty infants and toddlers were enrolled from 2017-2019. Improvement or stable status was noted in 18/28 patients in both mental and motor domains. Of the remaining 10, no improvement or regression was noted in (a) both mental and motor domains in three patients (b) mental domain only in five patients and (c) motor domain alone in two patients. Discussion: Early remedial intervention using indigenous instruments/tools is feasible, pragmatic, and effective in a resource-constrained setting.
Keywords: Developmental Assessment Scale for Indian Infant, early intervention, high-risk infants, neurodevelopmental disability, NIEPID modules
|How to cite this article:|
Thergaonkar N, Thergaonkar RW, Thakur M, Nagamani B, Bhat V. Early Neurodevelopmental Intervention: A Hospital-Based Observational Study. J Mar Med Soc 2022;24, Suppl S1:34-9
| Introduction|| |
The global decline in under-5 mortality, i.e., between 1990 and 2015, was not matched by a commensurate decline in the prevalence of developmental disabilities in this age group. Increased survival of preterm neonates is an important factor for this. In India, a large study of 3964 children from five geographically different areas reported the cumulative prevalence of neurodevelopmental disabilities among children aged 2–6 years to be 9.2% (95% confidence interval 7.5, 11.2%). The significant risk factors identified included noninstitutional delivery, perinatal asphyxia, neonatal illness requiring admission, postnatal neurological infection, and low birth weight.
With limited availability of early developmental assessment and intervention programs, the crucial window of time (period with maximal neuronal plasticity, i.e., from the neonatal period to the first 2 years) for early intervention is often lost. We explored the efficacy of a simplified early intervention plan requiring minimal resources. The objective of the present study was to measure the efficacy of an early intervention program for neurodevelopmental disabilities in a mid-sized hospital.
| Subjects and Methods|| |
Design and setting
The design of the study was prospective, observational. The setting of the study was the department of pediatrics of a mid-level hospital in South India. The period of study was from November 2017 to July 2019.
The subjects of the study were all infants and toddlers aged 1–30 months who were (a) at risk for, suspected to have or diagnosed with developmental delay as assessed by a pediatrician at their first outpatient visit and (b) were available for follow-up visits as advised (inclusion criteria). For the purposes of enrolment in the study, developmental delay was diagnosed on clinical evaluation by a pediatrician. An infant was considered to be at risk for developmental delay in case there was history of any of the following: (a) meningitis/encephalitis, (b) epilepsy/seizure disorder, (c) dysmorphisms/congenital anomalies, (d) weight for age <−3 z score as per charts of the Indian Academy of Pediatrics, (e) prematurity ≤34 weeks, (f) extremely low birth weight/very low birth weight/severely small for gestational age at birth (weight <3rd percentile at corrected gestational age as per Fenton charts, 2013), (g) perinatal asphyxia, (h) recurrent apnea, (i) neonatal seizures, (j) neonatal intensive care unit (NICU) stay >5 days, or (k) parental or sibling history of developmental disability, psychiatric illnesses, and hearing loss. A child who on clinical evaluation by the pediatrician was assessed to be neither normal nor delayed but was assessed to be requiring a follow-up evaluation to determine normal/abnormal status was classified as “suspected developmental delay.” Infants and toddlers with (a) medical instability and (b) profound developmental delay at first assessment were excluded.
Patients finally enrolled were assessed by a rehabilitation psychologist and provided remedial intervention. In addition, parents were educated about timely developmental assessment, benefits of early intervention program, and methods of remedial follow-up. In case a patient improved or showed stable normal status, the intervention was continued. In case of no improvement or regression, follow-up details were noted, and the patient questioned regarding any difficulty in implementing the interventional plan. Informed consent was obtained from the parents of all patients finally included in the study.
Developmental Assessment Scale for Indian Infants
Developmental Assessment Scale for Indian Infants (DASII), an Indian adaptation of Bayley Scales, was selected for the purpose of the study as it is considered a standard assessment tool for developmental delay., The scale gives the developmental profile of the infant from 1 to 30 months of age with respect to mental and motor development. The mental domain is assessed on 163 items assigned to 10 clusters (cognizance-visual, cognizance-auditory, reaching/manipulation/exploring, memory, social interaction/imitative behavior, language-vocalization/speech/communication, language-vocabulary/comprehension, understanding of relationship, differentiation by use/shape/movements, and manual dexterity). The motor domain is assessed using 67 items, which are assigned to five clusters (neck control, body control, locomotion-coordinated movements, locomotion-skills, and manipulation).
Awarding a raw score to the highest item passed in a cluster assesses performance in that cluster. This raw score can be interpreted in terms of percentile for age. The raw scores of all the clusters in the motor and mental domains are added to yield a composite raw score for these domains. The raw scores correspond to the child's developmental age in the motor (MoA) and mental (MeA) domains. The motor developmental quotient (MoDQ) and mental developmental quotient (MeDQ) are calculated using Alfred Binet intelligence quotient calculation equation (MoA/MeA)/chronological age × 100. These quotients are then classified into normal (above 85), borderline (66–84), mild (51–65), moderate (36–50), severe (21–35), and profound deficit (20 and below).,
National Institute for Empowerment of Persons with Intellectual Disabilities (NIEPID) modules for remedial intervention
These modules, prepared by the NIEPID, India (formerly known as National Institute for the Mentally Handicapped), are available in the form of published handbooks, which are intended for use by both professionals and parents. The interventions advised in these handbooks are in the form of home-based activities to be performed by the caretakers. The modules used in the study covered gross and fine motor skills, activities of daily living, expressive and receptive language skills, and cognition and social and emotional skills. These handbooks are multilingual and may be downloaded free of cost.,,,
Patients with normal developmental evaluation (MoDQ and MeDQ ≥85) during baseline assessment were advised regular follow-up. Patients with developmental delay (MoDQ and/or MeDQ <85) were advised monthly follow-up for intervention as well as repeat assessment using DASII.
After initial evaluation by DASII, an individualized remedial intervention plan using the NIEPID modules was prepared by the rehabilitation psychologist and instituted for the patients. Remedial intervention focused on the skill deficits found in the motor and mental domains as assessed by DASII. Intervention was individualized for each infant and consisted of stimulating play-based, age-appropriate activities in each domain and its clusters.
All parents were given simulation activities as well as detailed verbal and written instructions regarding the intervention. In addition, soft copies of the relevant extracts of the handbooks were made available to them. [Table 1] shows the process of training of parents.
|Table 1: Parent training and follow-up process using video interaction guidance techniques|
Click here to view
Weekly remedial follow-up and compliance monitoring was performed through Video Interaction Guidance (VIG). This entailed observation of the recordings of the parent–infant interaction while performing the prescribed activities, guiding and fine-tuning these activities as well as responding to queries from parents through electronic media such as WhatsApp and E-mail.
In-person follow-up was planned monthly for children with delay. Repeat assessment using DASII was planned 3 months after the first assessment for all patients at a mutually convenient date. However, the actual reassessment took place at a median interquartile range of five (3–7) months as per availability of the patients. The assessment–intervention cycle is shown in [Figure 1].
A case record form was developed by the investigators prior to the study to record the baseline demographic data, medical and developmental history, details of birth including gestational age, birth weight, perinatal complications if any, whether at risk for developmental delay, developmental delay suspected on screening or developmental delay diagnosed on clinical evaluation, clinical findings, and details of follow-up visits. Outcomes were defined as shown in [Table 2].
Case records of patients showing “no improvement” or “regression” in mental and motor domains were reviewed and parents questioned regarding any difficulty in implementing the intervention as a qualitative aspect of the study.
All statistical analyses were performed using Microsoft Excel 16. Continuous data were expressed in median (range). Nominal data and ordinal data were expressed in number (percentage).
The study was approved by the Institute Ethics Committee.
| Results|| |
Enrolment and baseline characteristics
A total of 30 patients met the inclusion criteria. One patient each with profound developmental delay at first assessment (am 8 months infant with cerebral palsy and spastic quadriparesis) and medical instability (a 3 months infant with combined saposin deficiency and recurrent pneumonia) were excluded from the study. The baseline characteristics of the 28 patients who participated in the study are shown in [Table 3]. The diagnosis in patients with disease onset in neonatal period was as follows: prematurity: four; birth asphyxia, sepsis/meningitis, and neonatal seizures: three each; and hypoglycemia and history of NICU care with unclear details: two each. Among the patients with disease onset in infancy, the diagnosis was as follows: Down syndrome: three; cerebral palsy and suspected developmental delay of unclear origin: two each; and epileptic encephalopathy, hydrocephalus, neurological infection, and craniosynostosis: one each. In the motor domain, the assessment of patients was as follows: normal: 12 (42.9%), borderline: 8 (28.6%), mild delay: 4 (14.3%), moderate delay: 2 (7.1%), and severe delay: 2 (7.1%). In the mental domain, the assessment of patients was as follows: normal: 17 (60.7%), borderline: 4 (14.3%, mild delay: 3 (10.7%), moderate delay: 2 (7.1%), and severe delay: 2 (7.1%).
Details of outcome are shown in [Table 4]. In the mental domain, we noted improvement in 6 (21.4%), stable normal status in 14 (50.0%), no improvement in 4 (14.3%), and regression in 4 (14.3%) patients. In the motor domain, we noted improvement in 12 (42.9%), stable normal status in 11 (39.3%), no improvement in 2 (7.1%), and regression in 3 (10.7%) patients. “No improvement” or “regression” was seen in mental as well as motor domains in three patients. Of these, two patients were cases of Down syndrome and cerebral palsy, respectively; both were irregular in follow-up. The third patient was also a case of cerebral palsy who was regular on follow-up but did not show improvement. Five patients showed “no improvement” or “regression” in the mental domain only. Of these, one patient was born extreme preterm (24 weeks gestational age), was regular on follow-up, and compliant with tasks for mental development. On case review and questioning, excessive passive activity related to electronic media used by the child and indulgent parenting were deemed to be the reasons for regression. After modification of parental behavior, the child had shown improvement, though after the study period was completed. The diagnosis in the remaining four patients was epilepsy, neonatal sepsis, cerebral palsy, and Down syndrome in one patient each. All were noted to be irregular in follow-up with unsatisfactory compliance with instructions. Two patients showed “no improvement” or “regression” in the motor domain only. Of these, one patient had a diagnosis of neonatal sepsis and the other cerebral palsy. Both the patients were observed to be noncompliant with the management plan due to domestic compulsions.
| Discussion|| |
In this study, we offered a simple early intervention program to 28 infants and young children at risk for or having developmental delay. We noted improvement or stable normal status in 18/28 patients. Of 10 patients who showed “no improvement” or “regression” in at least one domain (motor or mental), issues with compliance, follow-up, or domestic support seemed to be a concern in all but one patient.
Structured programs for developmentally supportive care and early intervention such as the Newborn Individualized Developmental Care and Assessment Program and Infant Health and Development Program have demonstrable benefit., Such intervention programs have been shown to be of benefit in many situations such as malnutrition, HIV infection, and sequelae of neonatal disorders.,, A Chinese study reported benefit in mental but not motor development index. However, a randomized controlled trial from India reported a significant reduction in abnormal findings in mental as well as motor domains. It is noteworthy that nearly all studies so far have utilized an intervention that requires resources including a dedicated center with multiple professionals such as psychologists, occupational therapists, speech and language pathologists, and physiotherapists. The intervention protocols used in most published studies are not freely or widely available.
Our early intervention program consisted of assessment using DASII, training for which can be imparted to pediatricians and psychologists in the form of a short course or during ab-initio training of these professional. Developmental assessment rather than screening is recommended for children with suspected or existing neurodevelopmental disability. The intervention consists of open-sourced and multilingual modules prepared by NIEPID designed for use by parents and untrained paramedics after minimal training. These modules are now available on an open-sourced mobile application. This makes the program easy to implement and therefore feasible as well as sustainable in most hospitals. Two important aspects of our workflow were empowerment of parents and use of electronic media for clearing doubts. Empowerment of parents through psychoeducation makes them aware of the child's condition and facilitates a continuum of care. This is of importance where a complete setup inclusive of resource persons such as occupational therapists and speech and language pathologists is either not available or inaccessible. Similarly, the use of electronic media for clearing doubts can save unnecessary visits and optimize the overall outcome. Technology-assisted intervention shows promise in improving physical as well as mental health in children. A systematic review reported the benefits of video-feedback intervention in children with neurodevelopmental disability in terms of improved speech, behavior, overall developmental quotient, parent–child relationship, and parental interactive behavior. The module, by utilizing VIG, also minimizes visits to the hospital. This is now of added benefit during the ongoing COVID-19 pandemic.
Our study had certain limitations. There were only 28 patients of different ages and with different diagnoses. The small size and heterogeneous nature of our cohort precluded statistical analysis but provided an important proof-of-concept. Inadequate compliance was noted in nine patients. This is probably because the concept as well as the importance of early intervention is not easily understood by parents despite explanation by health-care providers. It may be beneficial to create initiatives for public awareness and dovetail early intervention with developmentally supportive care in the NICU while in hospital and with the immunization schedule of the infant on discharge and subsequent visits. The limitations of the study notwithstanding, we noted encouraging results in 18/28 patients. The study intervention is likely to have ensured developmental scaffolding even in the infants with stable normal status by providing age-appropriate stimulation. A larger prospective study is recommended to confirm our findings.
There is a case to recognize the importance of early intervention and institutionalize the same in all service hospitals with pediatricians. Early intervention centers may be planned using the operational guidelines for District Early Intervention Centers duly scaled up or down depending on the workload.
| Conclusion|| |
An early intervention program consisting of developmental assessment using DASII, an indigenous Indian tool and intervention using open-sourced modules of NIEPID, is feasible and shows promise in infants and young children at risk for having developmental disabilities. Electronic media can support such an early intervention program by offering “course correction.” There is a case to initiate early intervention services in service hospitals having pediatric departments.
The authors are grateful to Surg Cmde Shankar Narayan, Commanding Officer, INHS Kalyani, for perusing the manuscript and suggesting requisite changes.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
Global Research On Developmental Disabilities Collaborators. Developmental disabilities among children younger than 5 years in 195 countries and territories, 1990-2016: A systematic analysis for the global burden of disease study 2016. Lancet Glob Health 2018;6:e1100-21.
Arora NK, Nair MK, Gulati S, Deshmukh V, Mohapatra A, Mishra D, et al.
Neurodevelopmental disorders in children aged 2-9 years: Population-based burden estimates across five regions in India. PLOS Med 2018;15:E1002615.
Cusick SE, Georgieff MK. The role of nutrition in brain development: The golden opportunity of the “first 1000 days”. J Pediatr 2016;175:16-21.
Fenton TR, Kim JH. A systematic review and meta-analysis to revise the fenton growth chart for preterm infants. BMC Pediatr 2013;13:59.
Phatak P. Manual for Using Developmental Assessment Scales for Indian Infants (DASII). Pune: Anand Agencies; 1997.
Patni B. Developmental assessment scale for Indian infants. Indian J Pract Pediatr 2012;14:409-12.
Narayan J, Shobha J. Enhancing Gross Motor Skills. 1st
ed. Secunderabad: National Institute for the Mentally Handicapped; 1996.
Persha AJ, Navwi KR. Visual Stimulation Activities for Toddlers. 1st
ed. Secunderabad: National Institute for the Mentally Handicapped; 2004.
Persha AJ, Reddy KV. Positioning and Stimulation Activities for Infants and Young Children with Motor Problems. 1st
ed. Secunderabad: National Institute for the Mentally Handicapped; 2003.
Peshawaria R, Menon DK, Reddy S. Play Activities for Young Children with Special Neds. 1st
ed. Secunderabad: National Institute for the Mentally Handicapped; 1991.
Kennedy H, Ball K, Barlow J. How does video interaction guidance contribute to infant and parental mental health and well-being? Clin Child Psychol Psychiatry 2017;22:500-17.
Bonnier C. Evaluation of early stimulation programs for enhancing brain development. Acta Paediatr 2008;97:853-8.
Spittle A, Orton J, Anderson PJ, Boyd R, Doyle LW. Early developmental intervention programmes provided post hospital discharge to prevent motor and cognitive impairment in preterm infants. Cochrane Database Syst Rev 2015 Nov 24;(11):CD005495. doi: 10.1002/14651858.CD005495.pub4.
Bao X, Sun S, Wei SM. Early intervention promotes intellectual development of premature infants: A preliminary report. Early Intervention of Premature Infants Cooperative Research Group. Chin Med J (Engl) 1999;112:520-3.
Nahar B, Hossain MI, Hamadani JD, Ahmed T, Huda SN, Grantham-McGregor SM, et al.
Effects of a community-based approach of food and psychosocial stimulation on growth and development of severely malnourished children in Bangladesh: A randomised trial. Eur J Clin Nutr 2012;66:701-9.
Nair MK, Sunitha RM, Leena ML, George B, Bhaskaran D, Russell PS. CDC Kerala 2: Developmental intervention package for babies <;1,800 g – Outcome at 6 mo using DASII. Indian J Pediatr 2014;81 Suppl 2:S73-9.
Potterton J, Stewart A, Cooper P, Becker P. The effect of a basic home stimulation programme on the development of young children infected with HIV. Dev Med Child Neurol 2010;52:547-51.
Nair MK, Philip E, Jeyaseelan L, George B, Mathews S, Padma K. Effect of Child Development Centre model early stimulation among at risk babies – A randomized controlled trial. Indian Pediatr 2009;46 (Suppl):s20-6.
Hall CM, Bierman KL. Technology-assisted interventions for parents of young children: Emerging practices, current research, and future directions. Early Child Res Q 2015;33:21-32.
Provenzi L, Giusti L, Caglia M, Rosa E, Mascheroni E, Montirosso R. Evidence and open questions for the use of video-feedback interventions with parents of children with neurodevelopmental disabilities. Front Psychol 2020;11:1374.
[Table 1], [Table 2], [Table 3], [Table 4]