Transcript pediatric evaluation of the child at risk for potential

PEDIATRIC EVALUATION OF
THE CHILD AT RISK FOR
POTENTIAL DEVELOPMENTAL
DISABILITIES
GENOVEVA C. PRIETO, M.D.
MIAMI CHILDREN’S HOSPITAL
DEVELOPMENTAL DELAY
40% DELAY IN A SINGLE DEVELOPMENTAL AREA OR 25 %
DELAYS IN 2 OR MORE AREAS GROSS MOTOR, FINE MOTOR,
COGNITION, SPEECH / LANGUAGE, PERSONAL / SOCIAL, OR
ACTIVITIES OF DAILY LIVING
GLOBAL DELAY :SIGNIFICANT DELAY IN 2 OR MORE
DEVELOPMENTAL DOMAINS
15-18% OF CHILDREN IN U.S.
COMMON CLINICAL PROBLEM IN PEDIATRICS (PREVALENCE OF
15-20%)
PCP ENCOUNTERS DD OR BP IN 1 OF EVERY FOUR PATIENTS
VISITS
RELATIVE INCREASE OVER THE PAST 2 DECADES
FACTORS THAT INFLUENCE THE
RELATIVE INCREASE IN DD AND BP
MORE USE OF IMMUNIZATIONS AND ANTIBIOTICS
PARENTS AWARNESS AND CONCERNS
AVAILABILITY OF FREE PUBLIC DEVELOPMENTAL
PROGRAMS FOR REFERRAL
IMPROVEMENT OF THE SURVIVAL RATE IN VLBW
INFANTS
GOALS IN THE EVALUATION OF
DEVELOPMENTAL DELAY
EARLY IDENTIFICATION
EARLY REFERRAL TO EIP
DETERMINATION OF AN ETIOLOGIC DIAGNOSIS
WHICH WOULD PROVIDE INFORMATION:
PATHOGENESIS
*CRTITICAL QUESTIONS
PROGNOSIS
MOST OFTEN POSED TO THE
RECURRENCE RISKS
CLINICIAN BY THE FAMILIES
SPECIFIC MEDICAL INTERVENTIONS
GOALS IN THE EVALUATION OF
DEVELOPMENTAL DELAY
DETERMINATION OF AN UNDERLYING
ETIOLOGY SERVES TO LIMIT ADDITIONAL
UNNECESSARY TESTING AND EMPOWERS THE
FAMILY BY PROVIDING A BETTER
UNDERSTANDING OF THE CHILD’S PROBLEM
AND THE REASON(S)FOR IT
IDENTIFICATION OF THE CHILD WITH
POTENTIAL DELOPMENTAL DELAY
PRENATAL
PRESENT
POSTNATAL
FAMILY
IDENTIFICATION OF THE CHILD WITH
POTENTIAL DELOPMENTAL DELAY
PHYSICAL EXAMINATION
DYSMORPHIC FEATURES
ABNORMAL NEUROLOGICAL EXAM
GROWTH DELAY
PARENTAL CONCERNS
THE ROLE OF THE PARENTS IN THE
DECTECTION OF DEVELOPMENTAL AND
BEHAVIORAL PROBLEMS
STRONG RELATIONSHIP BETWEEN PARENTS ‘
CONCERNS AND CHILDREN’S DEVELOPMENTAL
STATUS (Glascoe FP,Peds In Rev 2000. Chis PJ, Peds Rev 2000)
FINE MOTOR , LANGUAGE, COGNITIVE AND
SCHOOL SKILLS : HIGH LEVELS OF SENSITIVITY
(Glacoe FP, Peds 95, 97)
GROSS MOTOR SKILLS AND MEDICAL / HEARING
STATUS : HIGHLY RELATED TO DEVELOPMENTAL
PROBLEMS (Glascoe FP, Clin Pediatr 91, 94)
THE ROLE OF THE PARENTS IN THE
DECTECTION OF DEVELOPMENTAL AND
BEHAVIORAL PROBLEMS
87% CHILDREN WITH ADHD : CONCERNS RELATED
TO IMPULSIVENESS, INATTENTION, OR
OVERACTIVITY (Mulhern et al, Am J Dis Child. 93)
CONCERNS RELATED TO CHILDREN’S HEARING :
HIGHLY SENSITIVE INDICATOR OF HEARING
PROBLEMS ( Glascoe FP, Ped 91. Diamond K , J Div Early Childhood 87)
ABSENCE OF CONCERNS OR CONCERNS IN
OTHER AREAS ( SEL-HELP OR SOCIALIZATION) :
CORRELATE WITH CHILDREN WITHOUT ANY
PROBLEMS (Glascoe FP, Am J Dis Child 89)
THE ROLE OF THE PARENTS IN THE
DECTECTION OF DEVELOPMENTAL AND
BEHAVIORAL PROBLEMS
PARENTAL MENTAL HEALTH : STRONG CONTRIBUTOR
(Dulcan MK et al. J Am Acad Child Adolesc Psychiat 90. Glascoe FP, Dworking PH. Pediatrics 95)
ADVERSE EFFECTS ON CHILDREN’S HEALTH
– PARENTAL DEPRESSION, ANXIETY OR DISTRESS
– ADDICTION
– PARENTAL HEALTH ISSUES (Riley AW et al.Med Care 93)
– SOCIOECONOMIC ISSUES
PARENTAL LEVEL OF EDUCATION AND EXPERIENCE
(PARENTS COMPARE THEIR CHILDREN TO OTHERS) (Glascoe FP et al.
Clin Pediatr 1991,1994. Pediatrics 91)
THE ROLE OF THE PCP IN THE DECTECTION
OF DEVELOPMENTAL AND BEHAVIORAL
PROBLEMS
CLINICAL JUDGEMENT
DETECTS < 30% OF CHILDREN
WITH M.R., LEARNING
DISABILITIES, LANGUAGE IMPAIRMENTS (GLASCOE FP, PED REV 2000)
IDENTIFIES < 50% OF CHILDREN WITH SERIOUS EMOTIONAL
AND BEHAVIORAL DISTURBANCES
THE USE OF VALIDATED SCREENING TOOLS (<25%)
SENSITIVITY TO PSYCHOSOCIAL PROBLEMS 70 – 80%
SPECIFICITY TO NORMAL DEVELOPMENT 70 – 80%
20 – 30% FALSE + IDENTIFICATION  OVER-REFERRAL
(BELOW AVERAGE: INTELECTUAL, LANGUAGE OR ACADEMIC SKILLS)
THE ROLE OF THE PCP IN THE
DECTECTION OF DEVELOPMENTAL AND
BEHAVIORAL PROBLEMS
AMERICAN ACADEMY OF PEDIATRICS‘
COMMITTEE ON CHILDREN WITH
DISABILITIES RECOMMENDS THAT
PEDIATRICIANS USE VALIDATED
SCREENING TOOLS AT EACH HEALTH
SUPERVISION VISIT
USE OF VALIDATED SCREENING TOOLS
BY THE PCP
DIFFICULT TO COMPLY WITH AAP
RECOMMENDATIONS
MINIMAL REIMBURSEMENT
YOUNG PATIENTS ‘ LIMITED COMPLIANCE
TIME CONSTRAINTS
CONCERNS ABOUT ACCURACY AND LENGTH
OF WELL-KNOWN SCREENING TOOLS
INCONSISTENT HEALTH SUPERVISION
ADMINISTRATION OF SCREENING TOOLS ONLY
TO SYMPTOMATIC PATIENTS
USE OF VALIDATED SCREENING TOOLS
BY THE PCP
THE MOST EFFECTIVE TOOLS ARE THOSE THAT
RELY ON PARENTAL REPORTS ( DESCRIPTIONS OF
CHILDREN’ SPECIFIC SKILLS)
– ELIMINATE THE NEED FOR OBTAINING CHILDREN’S
COOPERATION AND EFFORT
– PROVIDE A THOROUGH SAMPLING OF CHILDREN’S SKILLS
– HAVE FLEXIBLE ADMINISTRATION METHODS :
INTERVIEWS
OVER THE TELEPHONE
SENT HOME IN PREPARATION FOR A FOLLOW UP VISIT
SELF-ADMINISTERED IN WATING ROOMS
USE OF VALIDATED SCREENING TOOLS
BY THE PCP
MANY TOOLS ARE PUBLISHED IN SPANISH AND
OTHER LANGUAGES
SOME HAVE OPTIONS FOR DIRECTLY ELICITING
SKILLS FROM CHILDREN WHEN COMMUNICATION
BETWEEN PARENT AND PROVIDER IS
PROBLEMATIC
MANY STANDARDIZED QUESTIONAIRES ARE
BRIEF, EASY TO READ, SCORE AND INTERPRET
USE OF VALIDATED SCREENING TOOLS
BY THE PCP
COMPARISONS OF PARENTS ‘ REPORTS WITH
REPORTS BY OTHERS ARE VERY HELPFUL FOR
ASSESSING THE CROSS-INFORMANT
CONSISTENCY OF PROBLEMS ( TEACHERS, OTHER
PARENT, ADOLESCENTS, SUBSPECIALISTS)
DEVELOPMENTAL AND BEHAVIORAL SCREENING TESTS
CHILD DEVELOPMENTAL
INVENTORIES
PARENTS’ EVALUATIONS OF
DEVELOPMENTAL STATUS (PEDS)
*
3-72 MO.
THREE SEPARATE INSTRUMENTS
EACH 60 YES-N0 DESCRIPTIONS
10 MINUTES . Se > 75%, Sp 70%
BIRTH – 8 Y
10 QUESTIONS
IDENTIFIES WHEN TO REFER,
SCREEN, REASSURE OR MONITOR
MORE VIGILANT. 2 MINUTES
Se 74-79%, Sp 70-80%
612-929-6220
www.pedstest.com
BEHAVIORAL/EMOTIONAL
*
2 ½ - 11 Y
35 SHORT STATEMENTS OF
COMMON BEHAVIOR.
7 MINUTES
Se 80%, Sp 86%
800-331-8378
615-226-4460
CHILD BEHAVIOR CHECKLIST
1 ½ - 18 Y
138 ITEMS. 20 – 25 MINUTES
PROFILE OF BEHAVIORAL DEVIANCY AND
SOCIAL COMPETENCE. COMPUTER SCORE
RECOMMENDED. DIFFERENT LANGUAGES
www.ASEBA.org
802-656-8313
DEVELOPMENTAL AND BEHAVIORAL SCREENING TESTS
*
TEACHER REPORT FORM
SOCIAL ENVIRONMENT INVENTORY
2 – 16 Y
138 ITEMS. 20 – 25 MINUTES
BASED ON CBCL
*
YOUTH SELF-REPORT
5 – 10 Y
35 ITEMS. 10 MINUTES
IDENTIFICATION OF
FAMILY ‘ STRESSORS
CHILDREN’S DEPRESSION
INVENTORY
11- 18 Y
112 ITEMS. 20 – 25 MINUTES
BASED ON CBCL
REQUIRES 5TH GRADE READING LEVEL
7 -16 Y. 10 MINUTES
27 ITEMS. SELF-REPORT OF SX
NOT EASILY OBSERVED BY PARENTS
UNRELIABLE < 10Y
DENVER DEVELOPMENTAL SCREENING TEST II
BIRTH – 6 Y. 125 TASKS. PERSONAL-SOCIAL. FINE-MOTOR-ADAPTIVE.LANGUAGE
GROSS MOTOR. TEST BEHAVIOR ITEMS
VALUABLE IN SCREENING ASYMPTOMATIC AND HIGH RISK CHILDREN
COMPARE A GIVEN CHILD’S PERFORMANCE TO OTHER CHILDREN SAME AGE
THE ROLE OF THE PCP IN THE DECTECTION
OF DEVELOPMENTAL AND BEHAVIORAL
PROBLEMS
SCREENING TOOLS ARE NOT DIAGNOSTIC
FURTHER EVALUATION IS MANDATORY IF CONCERN IS
RAISED BY THE RESULTS OF A SCREENING INSTRUMENT
IF THE PCP IS UNCOMFORTABLE ADMINISTERING A
STANDARDIZED SCREENING TOOL, HE/SHE SHOULD REFER
THE CHILD TO A DEVELOPMENTAL SPECIALIST OR
PSYCHOLOGIST
IF THE EVALUATION REVEALS THAT DEVELOPMENT IS WNL,
ONLY THEN THE FAMILY COULD BE REASSURED THAT THERE
IS NOT CONCERN
THE VALUE AND AVAILABILITY OF EARLY INTERVENTION PROGRAMS
IDENTIFICATION OF
DEVELOPMENTAL DELAY
EFFECTIVE BECAUSE DEVELOPMENT
IS MALLEABLE AND READILY AFFECTED
BY THE ENVIRONMENT
SUSPICIOUS OF DELAY OR ESTABLISHED
CONDITIONS ASSOCIATED WITH HIGH
PROBABILITY OF RESULTING IN DELAY
- genetic disorders
- metabolic disorders
-CNS abnormalities and insults
-sensory impairments
-attachment disorders
-premature infant < 1500 grs
-neonatal asphyxia
EARLY INTERVENTION PROGRAM
FEDERAL AND
STATE MANDATED
COMPREHENSIVE
MULTIDISCIPLINARY
EVALUATION
FEDERAL REQUIREMENT
PART C, PUBLIC LAW 99-457
INDIVIDUALS WITH DISABILITIES
EDUCATION ACT ( IDEA )
CHILDREN 3 – 22 Y
REFER TO CHILD FIND AT THE
FL DIAGNOSTIC AND LEARNING
RESOURCES SYSTEMS (FDLRS)
MIAMI DADE COUNTY PUBLIC SCHOOLS
IT DOES NOT
REQUIRE
PARENTAL
CONSENT
DESIGNED TO MEET THE NEEDS
FOR CHILDREN FROM BIRTH
TO THREE
GLASCOE FP PED REV 2000. McCARTON C. PED 98
THE VALUE AND AVAILABILITY OF EARLY INTERVENTION PROGRAMS
TEACH MOTHERS TO INTERACT AND
COMMUNICATE BETTER WITH
THEIR CHILDREN
PROVIDE INFORMATION TO PARENTS ON CHILD
MANAGEMENT AND DEVELOPMENT
PROVIDE APPROPRIATE
EXPECTATIONS FOR CHILDREN
AND GENERAL SOCIAL SUPPORT
REMOVE EXTERNAL
RISK FACTORS
TRAIN PARENTS IN
RESPONSIVENESS AND
EFFECTIVENESS
ENHANCE THE CHILD ‘S INTELECTUAL
LANGUAGE AND SOCIAL COMPETENCE
EIP
OPTIMIZE THE
ABILITIES OF THE
FAMILIES TO MEET
THE SPECIAL NEEDS
OF THEIR CHILDREN
PLACE CHILDREN IN
DEVELOPMENTALLY ENRICHING
SETTINGS
PROVIDE CONTINOUS
POSITIVE REDIRECTION
AND FOCUSED BUILDING
SKILLS
THE BENEFITS OF EIP CLEARLY DEPEND ON EARLY DETECTION AND EARLY
REFERRAL
SUMMARY OF FEDERAL LAWS IMPACTING
EARLY INTERVENTION SERVICES
Public Law 93-112, Section 504 of the Rehabilitation
Act: Discrimination against people with disabilities when
offering services is prohibited . ( 1973 )
Public Law 94-142: Education for All Handicapped
Children Act ( Renamed Education of the Handicapped
Act { EHA }. All children have the right to a free and an
appropriate public education. ( 1975 )
Public Law 99-457, Part H ( Added to EHA ). Birth to
Three services should be equal in all states and counties
( 1986 ).
SUMMARY OF FEDERAL LAWS IMPACTING
EARLY INTERVENTION SERVICES
Americans with Disabilities Education Act : in areas
of public services, discriminatory practices against
individuals with disabilities by employers is prohibited.
EHA is renamed the Individuals with Disabilities
Education Act ( IDEA). ( 1990 )
IDEA is revised ( IDEA-R). Part H is renamed Part C
which outlines a national program to assist each state in
establishing a system of services for children with
developmental delays from Birth to Three years and their
families. ( 1997 )
IDENTIFICATION OF THE CHILD WITH
POTENTIAL DELOPMENTAL DELAY
IDENTIFICATION OF THE CHILD WITH
POTENTIAL DELOPMENTAL DELAY
DETERMINATION OF AN ETIOLOGIC DIAGNOSIS HAS
SIGNIFICANT IMPLICATIONS WITH RESPECT TO :
PATHOGENESIS
*CRITICAL QUESTIONS MOST OFTEN POSED
PROGNOSIS
TO THE CLINICIAN BY THE FAMILIES
RECURRENCE RISKS
SPECIFIC MEDICAL INTERVENTIONS
SPECIFIC LABORATORY TESTING SHOULD BE
INDIVIDUALIZED
ETIOLOGIC YIELD OF YOUNG CHILDREN WITH
GLOBAL DEVELOPMENTAL DELAY
20.00%
18.00%
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16.00%
14.00%
12.00%
10.00%
8.00%
6.00%
4.00%
2.00%
0.00%
21.7 % SUSPECTED DX BY REF PCP
47.4% INVESTIGATION ALONE PROVIDED THE DX
18.4% INFORMATION FROM HX AND P/EX
IDENTIFICATION OF THE CHILD WITH
POTENTIAL DELOPMENTAL DELAY
CBC
CBG
LACTATE
AMMONIA
SERUM AA
URINE OA
TFT’S
LFT’S
KARYOTYPE
FRAGILE X
EEG
AUDITORY BRAIN-STEM POTENTIALS
SOMATOSENSORY EVOKED POTENTIALS
COMPUTED TOMOGRAPHY
MAGNETIC RESONANCE IMAGING
LEAD LEVELS
REFER TO SUBSPECIALISTS
ROLE OF THE PEDIATRICIANS IN
FAMILY-CENTERED EI SERVICES
AAP COMMITTEE ON CHILDREN WITH DISABILITIES
BY PROVIDING LEADERSHIP, PCP CAN HELP SET
THE STANDARD OF CARE IN THEIR COMMUNITIES
FOR CHILDREN WITH DISABILITIES OR THOSE AT
RISK OF DEVELOPMENTAL DELAYS
AN ENVIRONMENT SHOULD BE CREATED IN WHICH
THE PHYSICIAN, FAMILY , AND OTHER SERVICE
PROVIDERS WORK TOGETHER IN A CARING,
COLLEGIAL, AND COMPASSIONATE ATMOSPHERE
THAT ENSURES THAT EIP ARE OF HIGH QUALITY,
ACCESSIBLE, CONTINOUS, COMPREHENSIVE AND
CULTURALLY COMPETENT