Objectives •Definitions •Benefits and Possible harms of developmental surveillance and screening •Combining Screening and Surveillance Practice Algorithm

1. Identification and management
Dr Ola Alkhars
General Pediatric Consultant
King Faisal General Hospital
21/6/222

2. Objectives
• Definitions
• Benefits and Possible harms of developmental surveillance and
screening
• Combining Screening and Surveillance Practice Algorithm

3. To provide a framework
evidence-based
Practical Algorithm for
Combining Screening
and Surveillance for
early identification and
Intervention for child
with DD

4. Development
Process of functional maturation of individual
Progressive increase in skills & capacity to function
Related to maturation & myelination of the CNS
Includes psychosocial, emotional, social, cognitive changes

7. Questions should be answered for any Child with DD
• Static or progressive developmental disorder?
• What type of developmental issue?
• Global, motor, language, social
• What is the current developmental level of the child ?
• Possible timing? (prenatal/perinatal/postnatal)
• Is there a likely underlying etiology?
• structural, genetic, birth related
• What are the current therapy/rehabilitative needs of the patient ?

9. Diagnostic criteria
Bélanger SA, Caron J. Evaluation of the child with global developmental delay and intellectual disability. Paediatr Child Health. 2018;23(6):403-419. doi:10.1093/pch/pxy093

10. Diagnostic criteria
Bélanger, Stacey A, and Joannie Caron. “Evaluation of the child with global developmental delay and intellectual disability.” Paediatrics & child health vol. 23,6
(2018): 403-419. doi:10.1093/pch/pxy093

11. Definitions
Surveillance
• process of
recognizing
children who may
be at risk
Screening
• use of
standardized
tools to identify
those children at
risk
Evaluation
• complex process
aimed at
identifying
specific
developmental
disorders

12. BENEFITS OF SURVEILLANCE AND SCREENING
Early
Identification
Early Intervention
Earlier Rx of
underlying medical
conditions
Improved
outcomes

13. BENEFITS OF EARLY INTERVENTION
Decreased need for special education services during the school years
Higher graduation rates
Higher employment rates
Decrease in criminal behavior and violence
Benefits sustained for 15 to 49 years after the intervention .

14. BENEFITS FOR CAREGIVERS
Increased numbers of caregivers reporting that their concerns were addressed
and questions answered .
permits them to better match their expectations to their child's abilities
To provide developmentally appropriate activities and stimulation
To feel that they are doing all that they can to assist their child .
Opportunity to avert secondary problems such as self-esteem, self confidence.

15. PERCEIVED HARMS OF SURVEILLANCE AND SCREENING
False positive results
• Unnecessary developmental
evaluation
• Undue anxiety for caregivers
• Stigma for the child
False negative results
• Under-referral or delayed
referral to early intervention
services.

16. PERCEIVED BURDENS OF SURVEILLANCE AND SCREENING
• Additional time
• Additional documentation

17. Combining Screening and Surveillance:
a Practice Algorithm
1. ENSURE A MEDICAL HOME.
2.REVIEW MEDICAL CHART FOR HEALTH RISK FACTORS.
3. IDENTIFY AND MONITOR PSYCHOSOCIAL RISK AND PROTECTIVE FACTORS.
4. ELICIT AND ADDRESS PARENTS’ CONCERNS.
5. ADMINISTER AND SCORE DEVELOPMENTAL-BEHAVIORAL SCREENING TEST(S)
FOCUSED ON MILESTONES.
6. IF INDICATED, ADMINISTER (OR REFER FOR) ADDITIONAL MENTAL HEALTH
SCREENS.
AAP, American Academy of Pediatrics; IDEA, Individuals with Disabilities Education Act; PEDS:DM, Parents’ Evaluations of Developmental Status:
Developmental Milestones.

18. Combining Screening and Surveillance:
a Practice Algorithm
7. PROVIDE PHYSICAL EXAMINATION AND CLINICAL OBSERVATION.
8. WHEN INDICATED, PLAN AND REFER FOR ADDITIONAL MEDICAL TESTS.
9. EXPLAIN SCREENING RESULTS TO PARENTS.
10. MAKE REFERRALS FOR NONMEDICAL INTERVENTIONS AND FOLLOWING UP.
11. REVIEW REPORTS AND OTHER FEEDBACK FROM REFERRAL SOURCES AND
FOLLOW UP WITH FAMILIES
12. PROVIDE DEVELOPMENTAL-BEHAVIORAL PROMOTION.
AAP, American Academy of Pediatrics; IDEA, Individuals with Disabilities Education Act; PEDS:DM, Parents’ Evaluations of Developmental Status:
Developmental Milestones.

19. Combining Screening and Surveillance:
a Practice Algorithm
1. ENSURE A MEDICAL HOME.
2.REVIEW MEDICAL CHART FOR HEALTH RISK FACTORS.
3. IDENTIFY AND MONITOR PSYCHOSOCIAL RISK AND
PROTECTIVE FACTORS.
4. ELICIT AND ADDRESS PARENTS’ CONCERNS.
5. ADMINISTER AND SCORE DEVELOPMENTAL-
BEHAVIORAL SCREENING TEST(S) FOCUSED ON
MILESTONES.
6. IF INDICATED, ADMINISTER (OR REFER FOR)
ADDITIONAL MENTAL HEALTH SCREENS.

20. • A medical home is an approach
to providing comprehensive
primary care that facilitates
partnerships between patients,
clinicians, medical staff, and
families.
• Extends beyond the four walls
of a clinical practice.
• It includes specialty care,
educational services, family
support and more.

21. Combining Screening and Surveillance:
a Practice Algorithm
1. ENSURE A MEDICAL HOME.
2.REVIEW MEDICAL CHART FOR HEALTH RISK FACTORS.
3. IDENTIFY AND MONITOR PSYCHOSOCIAL RISK AND PROTECTIVE FACTORS.
4. ELICIT AND ADDRESS PARENTS’ CONCERNS.
5. ADMINISTER AND SCORE DEVELOPMENTAL-BEHAVIORAL SCREENING TEST(S)
FOCUSED ON MILESTONES.
6. IF INDICATED, ADMINISTER (OR REFER FOR) ADDITIONAL MENTAL HEALTH
SCREENS.

22. Why are we search for the aetiology ?
• Prognostication
• Prevention (associated conditions)
• Ends the diagnostic journey/limits unnecessary testing
• Recurrence risk
• Closure/family empowerment

23. ETIOLOGY OF GDD AND ID

24. Developmental Delay/Disability
• There is enormous psychological, emotional, and economic impact on
the affected individuals and society
• Prevalence: It is estimated 1-3%
• It is probably higher in Saudi Arabia

25. Habibullah H, Albradie R, Bashir S. Identifying pattern in global developmental delay children: A retrospective study at King Fahad specialist hospital, Dammam (Saudi
Arabia). Pediatr Rep. 2019 Dec 2;11(4):8251. doi: 10.4081/pr.2019.8251. PMID: 31871607; PMCID: PMC6908955.

30. Combining Screening and Surveillance:
a Practice Algorithm
1. ENSURE A MEDICAL HOME.
2.REVIEW MEDICAL CHART FOR HEALTH RISK FACTORS.
3. IDENTIFY AND MONITOR PSYCHOSOCIAL RISK AND PROTECTIVE FACTORS.
4. ELICIT AND ADDRESS PARENTS’ CONCERNS.
5. ADMINISTER AND SCORE DEVELOPMENTAL-BEHAVIORAL SCREENING TEST(S)
FOCUSED ON MILESTONES.
6. IF INDICATED, ADMINISTER (OR REFER FOR) ADDITIONAL MENTAL HEALTH
SCREENS.

31. PSYCHOSOCIAL RISK FACTORS
- Adverse childhood or family experiences
- Parental/caregiver unemployment or mental health problems
- Parents/caregivers with limited education/literacy
- Teenage parents

32. Protective/Resilience factors
• Strong connections within a loving, supportive family
• Active caregiver-child engagement
• Opportunities to interact with other children
• Opportunities to grow in independence in an environment with
appropriate structure

33. Combining Screening and Surveillance:
a Practice Algorithm
1. ENSURE A MEDICAL HOME.
2.REVIEW MEDICAL CHART FOR HEALTH RISK FACTORS.
3. IDENTIFY AND MONITOR PSYCHOSOCIAL RISK AND PROTECTIVE FACTORS.
4. ELICIT AND ADDRESS PARENTS’ CONCERNS.
5. ADMINISTER AND SCORE DEVELOPMENTAL-BEHAVIORAL SCREENING TEST(S)
FOCUSED ON MILESTONES.
6. IF INDICATED, ADMINISTER (OR REFER FOR) ADDITIONAL MENTAL HEALTH
SCREENS.

35. Combining Screening and Surveillance:
a Practice Algorithm
1. ENSURE A MEDICAL HOME.
2.REVIEW MEDICAL CHART FOR HEALTH RISK FACTORS.
3. IDENTIFY AND MONITOR PSYCHOSOCIAL RISK AND PROTECTIVE FACTORS.
4. ELICIT AND ADDRESS PARENTS’ CONCERNS.
5. ADMINISTER AND SCORE DEVELOPMENTAL-BEHAVIORAL SCREENING TEST(S)
FOCUSED ON MILESTONES.
6. IF INDICATED, ADMINISTER (OR REFER FOR) ADDITIONAL MENTAL HEALTH
SCREENS.

36. Copyrights apply

37. Copyrights apply

40. • Parent or caregiver-completed screening
tools that encourage parent/caregiver
involvement
• Tools to accurately identify children at
risk for developmental or social-
emotional delay
• Tools to educate adults about child
development and guide developmental
promotion

42. Features : ASQ-3 Intervals
2,4,6,8,9,10,12,14,16,18,20,22,24
27,30,33,36
42,48,54,60,66
Recommendations:
Monitor every 4-6 months up to 2 years
Monitor every 6 months after 2 years
Monitor more frequently if concerned

43. Features : ASQ-3 cover page
• Administration window
indicated on the cover page
• 16 months “window” is for
children ages 15 months 0 days
through 16 months 30 days

46. Features : ASQ-3 Areas & Questions
More
difficult

50. M-CHAT
An autism-specific screen (e.g., M-CHAT [Modified Checklist for Autism in Toddlers]).
Use of previsit, parent-completed tools is particularly efficient.

56. Combining Screening and Surveillance:
a Practice Algorithm
1. ENSURE A MEDICAL HOME.
2.REVIEW MEDICAL CHART FOR HEALTH RISK FACTORS.
3. IDENTIFY AND MONITOR PSYCHOSOCIAL RISK AND PROTECTIVE FACTORS.
4. ELICIT AND ADDRESS PARENTS’ CONCERNS.
5. ADMINISTER AND SCORE DEVELOPMENTAL-BEHAVIORAL SCREENING TEST(S)
FOCUSED ON MILESTONES.
6. IF INDICATED, ADMINISTER (OR REFER FOR) ADDITIONAL MENTAL HEALTH
SCREENS.

58. Indications for mental health screening
Psychosocial concerns identified by the caregivers
Family disruption
Poor school performance
Behavioral difficulty
Recurrent somatic complaints
Involvement of a social service

59. Combining Screening and Surveillance:
a Practice Algorithm
7. PROVIDE PHYSICAL EXAMINATION AND CLINICAL OBSERVATION.
8. WHEN INDICATED, PLAN AND REFER FOR ADDITIONAL MEDICAL TESTS.
9. EXPLAIN SCREENING RESULTS TO PARENTS.
10. MAKE REFERRALS FOR NONMEDICAL INTERVENTIONS AND FOLLOWING UP.
11. REVIEW REPORTS AND OTHER FEEDBACK FROM REFERRAL SOURCES AND FOLLOW UP
WITH FAMILIES
12. PROVIDE DEVELOPMENTAL-BEHAVIORAL PROMOTION.

60. Physical Examination
• Children should kept in close proximity to the parents
• Leave the more intrusive ( hands on ) aspects of the exam until the end
• Social interaction with parents & examiner

61. • Observations : Stand and look don't disturb , just give look for 30 sec.
for
• Dysmorphic pictures , gait and balance , left handed or right handed.

62. General physical examination
• Growth parameters
• Head shape and circumference
• Eye findings (e.g., cataracts in various IEM)
• Birth marks, vascular markings, and Wood lamp examination
• Spine
• Examine closely for findings consistent with abuse/neglect
• Hepatosplenomegaly

63. • Mental status
• Motor function
• Sensory exam.
• Evaluation of the cranial nerves.

64. Developmental Evaluation
• Rapport : Go to the child level and try to play with him.
• Demonstrate for him and ask to do a MOTOR DEVELOPMENTALN TASKS:
• GROSS MOTORM (stand /walk/run/jump/climb stairs/Ball )
• FINE MOTOR AND VISON (Cubes/Crayon and paper/Scissors and paper/Beads and threads/
pictures Book/Board/Pincer grip)
• HEARING / SPEECH ASSESSMENT AND COGNITION:
• Name , age, sex, address and ask him to count from 1-10
• Say and understanding of words/sentences structure
• Identify body parts or colors
• Assess concentration and attention
• Assess picture recognition and selection
• ASSESSMENT OF SOCIAL MILESTONES: (ask parent)
• Feeding
• Play (Solitary/Spectator/Parallel/Associate/Co-operative)
• Caring /Dressing

65. Combining Screening and Surveillance:
a Practice Algorithm
7. PROVIDE PHYSICAL EXAMINATION AND CLINICAL OBSERVATION.
8. WHEN INDICATED, PLAN AND REFER FOR ADDITIONAL MEDICAL TESTS.
9. EXPLAIN SCREENING RESULTS TO PARENTS.
10. MAKE REFERRALS FOR NONMEDICAL INTERVENTIONS AND FOLLOWING UP.
11. REVIEW REPORTS AND OTHER FEEDBACK FROM REFERRAL SOURCES AND FOLLOW UP
WITH FAMILIES
12. PROVIDE DEVELOPMENTAL-BEHAVIORAL PROMOTION.

66. MECP2

68. EEG and neuroimaging
INDICATIONS:
• clinical suspicion of a seizure disorder
• Hydrocephalus
• Micro- or macrocephaly
• Encephalopathy
• Neurofibromatosis
• Tuberous sclerosis
• Focal Neurological defiecit
• Extreme handedness at an early age
• persistence of fisting after 4 months
• Other neurological problem (not including autism)

69. Combining Screening and Surveillance:
a Practice Algorithm
7. PROVIDE PHYSICAL EXAMINATION AND CLINICAL OBSERVATION.
8. WHEN INDICATED, PLAN AND REFER FOR ADDITIONAL MEDICAL
TESTS.
9. EXPLAIN SCREENING RESULTS TO PARENTS.
10. MAKE REFERRALS FOR NONMEDICAL INTERVENTIONS AND
FOLLOWING UP.
11. REVIEW REPORTS AND OTHER FEEDBACK FROM REFERRAL
SOURCES AND FOLLOW UP WITH FAMILIES
12. PROVIDE DEVELOPMENTAL-BEHAVIORAL PROMOTION.

70. • The primary medical provider should present the screening
results to parents in person.
• Results should be explained in a positive manner
• Asking the parents if they know any families with children who
have developmental differences may be helpful in
understanding any strong reaction to the information being
presented.
• Offers to re-explain findings to other family members may be
needed.

71. Combining Screening and Surveillance:
a Practice Algorithm
7. PROVIDE PHYSICAL EXAMINATION AND CLINICAL OBSERVATION.
8. WHEN INDICATED, PLAN AND REFER FOR ADDITIONAL MEDICAL
TESTS.
9. EXPLAIN SCREENING RESULTS TO PARENTS.
10. MAKE REFERRALS FOR NONMEDICAL INTERVENTIONS AND
FOLLOWING UP.
11. REVIEW REPORTS AND OTHER FEEDBACK FROM REFERRAL
SOURCES AND FOLLOW UP WITH FAMILIES
12. PROVIDE DEVELOPMENTAL-BEHAVIORAL PROMOTION.

72. • Referral forms or letters, which target the areas of concern
• speech-language therapy,
• Occupational and physical therapy
• Social-emotional assessment
• Intelligence testing, academics

73. Combining Screening and Surveillance:
a Practice Algorithm
7. PROVIDE PHYSICAL EXAMINATION AND CLINICAL OBSERVATION.
8. WHEN INDICATED, PLAN AND REFER FOR ADDITIONAL MEDICAL
TESTS.
9. EXPLAIN SCREENING RESULTS TO PARENTS.
10. MAKE REFERRALS FOR NONMEDICAL INTERVENTIONS AND
FOLLOWING UP.
11. REVIEW REPORTS AND OTHER FEEDBACK FROM REFERRAL
SOURCES AND FOLLOW UP WITH FAMILIES
12. PROVIDE DEVELOPMENTAL-BEHAVIORAL PROMOTION.

74. • Some parents wish to try at-home interventions.
• Other parents get “cold feet” and may be deterred by differing opinions from relatives (e.g.,
“His father was just like that” ; “It is a phase. She’ll grow out of it.”).
• A follow-up appointment in 3-4 months is helpful for encouraging families, and, if needed,
at least advising parents to visit the programs recommended.
• Note that ambiguous concerns such as “I think he’s doing better” still convey
substantial risk.

75. Combining Screening and Surveillance:
a Practice Algorithm
7. PROVIDE PHYSICAL EXAMINATION AND CLINICAL OBSERVATION.
8. WHEN INDICATED, PLAN AND REFER FOR ADDITIONAL MEDICAL TESTS.
9. EXPLAIN SCREENING RESULTS TO PARENTS.
10. MAKE REFERRALS FOR NONMEDICAL INTERVENTIONS AND FOLLOWING UP.
11. REVIEW REPORTS AND OTHER FEEDBACK FROM REFERRAL SOURCES AND FOLLOW UP
WITH FAMILIES
12. PROVIDE DEVELOPMENTAL-BEHAVIORAL PROMOTION.

76. • Providing written patient education materials
• When screening and surveillance methods do not identify a need for nonmedical
interventions, the need to address “the normal problems of normal children”
remains.
• All parents need advice about typical problems
• All parents need to be encouraged to promote their child’s language and
preacademic/academic development.
• Follow up with families, in 6-8 weeks to assess the effectivenesss of promotion
activities.

79. • All patients with DD/LD need a comprehensive medical evaluation
by complete medical Hx, P/E
• Development assessment by using standardized development
assessment scales.
• If the clinical diagnosis is obvious or suspected, confirm the
diagnosis with appropriate genetic testing.

80. • If diagnosis is unknown and no clinical diagnosis is strongly suspected, begin in stepwise
evaluation by: chromosomal microarray; Fragile X testing; for females complete MECP2
• Whether diagnosed or not, results and their implications should be carefully explained
to the parents/care givers.
• Appropriate support should be made.