The Timely Diagnosis of Developmental Delay Karen Montgomery-Reagan, D.O. FACOP, FAAP Ohio University Heritage College of Osteopathic Medicine Department of Pediatrics

Developmental delay occurs when a child exhibits a significant delay in the acquisition of milestones. Deviation in development is A. child has differing rates of development in different developmental domains B. child loses previously acquired skills or milestones C. child has a delay in two or more domains D. child develops milestones outside of typical acquisition sequence

Identify the incorrect statement A. 66% of the children entering school are identified with a delay B. 5% of world’s children under age of 14 have some type of moderate to severe developmental delay C. 16-18% of children in US have a developmental/behavioral problem under 18 years of age D. Development impairment impacts the family and community

Objectives Understand reasoning for timely developmental diagnosis Understand the difference between screening and surveillance Introduce use of screening tools in the primary care office

PCP is the point of “first contact” for any new health concerns Developing a therapeutic relationship with my patients; treating several generations within a family and following patients over many years; counseling patients“ Having the implicit trust of my patients to direct their [preventive] care and treat their diseases. The privilege of having families count on me as one of their own and especially to share the growing up of their children.” Articles from Canadian Family Physician are provided here courtesy of College of Family Physicians of Canada

Who Says What USPSTF -- neither recommends for or against use of screening tools AAFP -- is in agreement with the USPSTF needing evidence The Individuals with Disabilities Education Act Amendments of 1997 and Title V of Social Security Act -- mandate that health care professionals provide early identification and intervention for development delay working with community collaborative systems Center for Disease Control and Prevention recommends the use of a brief developmental assessment to identify children who should receive intensive diagnosis or evaluation (2005) AAP –- recommends surveillance combined with standardized screening at well-child visits.

Childhood Development Trajectory of achieving physical, cognitive, communications, social-emotional, and self-help milestones within a specific age range. Delays – childhood mental or physical impairment or combination of mental and physical impairment that result in functional limitations in major life activities Developmental disabilities – impairment in one or more developmental domains

Definitions Global Delay – a delay in 2 or more developmental delays Deviations – occurs when a child develops milestone/skill outside of typical sequence Dissociation – occurs when a child has widely differing rates of development in different domains Regression – child loses acquired skills or milestones

Early Identification of Children with Developmental Delay 12-16% of children in the United States have at least one development delay Only 3% will be diagnosed before 3 years of age Only 1/3 by time the child enters kindergarten Late detection results in opportunity lost for “early intervention”

What does late detection mean for the child, parent and society Early interventions Improvement in language/communication Cognitive Social-emotional Family better able to meet the needs of the child Decreased need for costly special education services

Barriers for primary care Cost Lack of time Reimbursement Insufficient training Over identification concern Availability of referral options Limited services in the community

Coordinated Systems of Health Care In the End The USPSTF states -- it is ultimately the responsibility of the physician to seek out and address parental concerns about their child’s development Substantial opportunities exist to help monitor the development of child in the US Protocols for developmental monitoring Use of validated developmental screening tools

Medical Home Parents’ expectation of their child’s medical home Continuous and comprehensive care Identify abnormality in development Be knowledgeable of community resources Facilitate referrals AAP: Bright Futures: guidelines for health supervision of infants, children and adolescents

Bright Futures

Surveillance vs Screening Developmental Surveillance Recognizing children who may be at risk of developmental delays Developmental Screening Administration of a brief standardized tool for possible identification of child at risk of a developmental disorder

Components of Surveillance Eliciting and attending to the parents’ concerns about their child’s development Documenting and maintaining a development history Making accurate observations of the child Identifying the risk and protective factors Maintaining an accurate record and documenting the process and findings

Recommendation from the AAP Developmental Surveillance at every well-child visit Developmental Screening using formal, validated tools at 9, 18, 30 (24) When a parent or provider has concern then formal screening performed

General Screening Tools validated Ages and stages questionnaire (ASQ-3) Ages and stages questionnaire: Social-Emotional (ASG-SE2) Parents' Evaluation of Developmental Status (PEDS) Parents’ Evaluation of developmental status- Development Milestones (Peds-DM) Modified checklist for Autism in Toddlers (M-Chat-R/F) Patient Health Questionnaire-9 (PHQ-9) Edinburgh Postnatal Depression scale Hunger Vital Sign https://www.aap.org/en-us/about-the-aap/Committees-Councils-Sections/Council-on-Children-with-Disabilities/Pages/Description-and-Policy.aspx

Administration of Development Tool Two types of formal screening tools Parent-Completed Parent completes the questionnaire Time efficient and reduce cost 5-10 minutes for parent to complete Directly administered Direct observation and parent input In-Depth information Useful as secondary stage screening

Ages and Stages Questionnaires

Administration of Development Tool Ages and Stages Questionnaire (ASQ) 21 age-specific questionnaires Five developmental domains Fine and gross motor, language/communication, problem solving/adaptive behavior, personal/social preformation 6 items in each area Section of 10 questions to query parental concern 4-6 grade reading level Takes 1-5 minutes to score Specificity 86%; Sensitivity 85%; reliability 0.94 Agesandstages.com

https://www.cdc.gov/ncbddd/childdevelopment/screening-hcp.html

https://www.aap.org/en-us/about-the-aap/Committees-Councils-Sections/Council-on-Children-with-Disabilities/Pages/Description-and-Policy.aspx

No “wait and see” approach Children who pass screening provides an opportunity to promote developmentally appropriate activities and discuss future milestones Children wo fail screening need close follow up or further testing Early intervention referral should not be delayed or know as “wait and see” Early treatment improves the quality of life for child and parents and less costly to society

Why 9 18 and 30 (24) month screen? 9 months – issues with motor skills identified and early communication skills 18 months – issues with communication and language are evident by this age 30 months – most motor, language, cognitive delays identified with screening tools Remember through surveillance that screenings should be administered if concerns raised by parents, PCP, or other care givers

Abnormal Screen Evaluation and Referral Comprehensive Medical Evaluation Early Childhood Professionals Pediatric subspecialists Early intervention programs Public school special education (3 year old)

Medical Home Interdisciplinary Team Provider Childhood educators Child psychologist Speech-language pathologists Audiologists Social workers Physical therapists Occupational therapists

Evaluation and Referral Primary Care Tests Vision and hearing Metabolic testing Lead and iron level Genetic testing EEG Brain imaging

Diagnostic Developmental Testing Bayley Scales of Infant and Toddler Development Woodcock-Johnson Psychoeducational Stanford-Binet intelligence scale Battellle Developmental Inventory Brigance System

Developmental Disorder Child with special health care needs which initiates chronic-condition management Medical Home should recognize and provide appropriate chronic-condition management with regular monitoring Medical Home develops a registry for children in the practice who have special care needs Medical Home provides a triad of primary care services: preventative care, acute illness management and chronic-condition management

Incorporating Screening in the office of Primary Care Use a quality-improvement approach Developmental screening is “whole-office” endeavor

Screening Payment CPT codes Developmental screening limited -- 96110 Developmental testing extended -- 96111 Medicare Resource Based Relative Value Scale -- codes and reflect physician work, practice expenses

Screening Payment, cont’d. CPT Code Tests it Includes Reimbursement 96127 ASQ-SE, PHQ-9, Conners $4.21 to $7.29 96161 EPDS $4.07 to $5.18 96110 M-Chat and ASQ $3.75 to $9.62

Summary Surveillance -- component of every visit Screening tools – surveillance identifies a concern and at 9, 18, and 30 month visit Screening positive – further testing is warranted Children with developmental disorders identified with special health care needs – chronic-condition management

Citations American Academy of Pediatrics; Council on Children with Disabilities, Section on Developmental Behavioral Pediatrics, Bright Futures Steering Committee and Medical Home Initiatives for Children with Special Needs Project Advisory Committee. (2006). Identifying Infants and Young Children with Developmental Disorders in the Medical Home: An Algorithm for Developmental Surveillance and Screening. Pediatrics, 118(1),405-420. doi:10.1542/peds.2006-1231 Division of Human Development and Disabilities, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention. (2018). Developmental Monitoring and Screening for Health Professionals. Retrieved from https://www.cdc.gov/ncbddd/childdevelopment/screening-hcp.html