pediatric evaluation of the child at risk for potential developmental disabilities genoveva c....

28
PEDIATRIC EVALUATION OF PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL POTENTIAL DEVELOPMENTAL DISABILITIES DISABILITIES GENOVEVA C. PRIETO, M.D. GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL MIAMI CHILDREN’S HOSPITAL

Upload: claude-morrison

Post on 18-Dec-2015

217 views

Category:

Documents


0 download

TRANSCRIPT

Page 1: PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

PEDIATRIC EVALUATION OF PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR THE CHILD AT RISK FOR

POTENTIAL DEVELOPMENTAL POTENTIAL DEVELOPMENTAL DISABILITIESDISABILITIES

GENOVEVA C. PRIETO, M.D.GENOVEVA C. PRIETO, M.D.

MIAMI CHILDREN’S HOSPITALMIAMI CHILDREN’S HOSPITAL

Page 2: PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

DEVELOPMENTAL DELAYDEVELOPMENTAL DELAY

40% DELAY IN A SINGLE DEVELOPMENTAL AREA OR 25 % 40% DELAY IN A SINGLE DEVELOPMENTAL AREA OR 25 % DELAYS IN 2 OR MORE AREAS DELAYS IN 2 OR MORE AREAS GROSS MOTOR, FINE MOTOR, GROSS MOTOR, FINE MOTOR, COGNITION, SPEECH / LANGUAGE, PERSONAL / SOCIAL, OR COGNITION, SPEECH / LANGUAGE, PERSONAL / SOCIAL, OR ACTIVITIES OF DAILY LIVINGACTIVITIES OF DAILY LIVING

GLOBAL DELAY :SIGNIFICANT DELAY IN 2 OR MORE GLOBAL DELAY :SIGNIFICANT DELAY IN 2 OR MORE DEVELOPMENTAL DOMAINSDEVELOPMENTAL DOMAINS

15-18% OF CHILDREN IN U.S.15-18% OF CHILDREN IN U.S.

COMMON CLINICAL PROBLEM IN PEDIATRICSCOMMON CLINICAL PROBLEM IN PEDIATRICS ((PREVALENCE OF PREVALENCE OF 15-20%)15-20%)

PCP ENCOUNTERS DD OR BP IN 1 OF EVERY FOUR PATIENTS PCP ENCOUNTERS DD OR BP IN 1 OF EVERY FOUR PATIENTS VISITSVISITS

RELATIVE INCREASE OVER THE PAST 2 DECADESRELATIVE INCREASE OVER THE PAST 2 DECADES

GLASCOE FP. PED 2002, PEDS IN REV 2000. SHEVELL MI. J OF PED 2000

Page 3: PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

FACTORS THAT INFLUENCE THE FACTORS THAT INFLUENCE THE RELATIVE INCREASE IN DD AND BPRELATIVE INCREASE IN DD AND BP

MORE USE OF IMMUNIZATIONS AND ANTIBIOTICSMORE USE OF IMMUNIZATIONS AND ANTIBIOTICS

PARENTS AWARNESS AND CONCERNSPARENTS AWARNESS AND CONCERNS

AVAILABILITY OF FREE PUBLIC DEVELOPMENTAL AVAILABILITY OF FREE PUBLIC DEVELOPMENTAL PROGRAMS FOR REFERRALPROGRAMS FOR REFERRAL

IMPROVEMENT OF THE SURVIVAL RATE IN VLBW IMPROVEMENT OF THE SURVIVAL RATE IN VLBW INFANTSINFANTS

Page 4: PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

GOALS IN THE EVALUATION OF GOALS IN THE EVALUATION OF DEVELOPMENTAL DELAYDEVELOPMENTAL DELAY

EARLY IDENTIFICATION EARLY IDENTIFICATION

EARLY REFERRAL TO EIPEARLY REFERRAL TO EIP

DETERMINATION OF AN ETIOLOGIC DIAGNOSIS DETERMINATION OF AN ETIOLOGIC DIAGNOSIS WHICH WOULD PROVIDE INFORMATION:WHICH WOULD PROVIDE INFORMATION:

PATHOGENESISPATHOGENESIS *CRTITICAL QUESTIONS*CRTITICAL QUESTIONS

PROGNOSISPROGNOSIS MOST OFTEN POSED TO THEMOST OFTEN POSED TO THE

RECURRENCE RISKSRECURRENCE RISKS CLINICIAN BY THE FAMILIESCLINICIAN BY THE FAMILIES

SPECIFIC MEDICAL INTERVENTIONSSPECIFIC MEDICAL INTERVENTIONS

Page 5: PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

GOALS IN THE EVALUATION OF GOALS IN THE EVALUATION OF DEVELOPMENTAL DELAYDEVELOPMENTAL DELAY

DETERMINATION OF AN UNDERLYING DETERMINATION OF AN UNDERLYING ETIOLOGY SERVES TO LIMIT ADDITIONAL ETIOLOGY SERVES TO LIMIT ADDITIONAL UNNECESSARY TESTING AND EMPOWERS THE UNNECESSARY TESTING AND EMPOWERS THE FAMILY BY PROVIDING A BETTER FAMILY BY PROVIDING A BETTER UNDERSTANDING OF THE CHILD’S PROBLEM UNDERSTANDING OF THE CHILD’S PROBLEM AND THE REASON(S)FOR ITAND THE REASON(S)FOR IT

Page 6: PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

IDENTIFICATION OF THE CHILD WITH IDENTIFICATION OF THE CHILD WITH POTENTIAL DELOPMENTAL DELAYPOTENTIAL DELOPMENTAL DELAY

PRENATAL POSTNATAL

PRESENT FAMILY

Page 7: PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

IDENTIFICATION OF THE CHILD WITH IDENTIFICATION OF THE CHILD WITH POTENTIAL DELOPMENTAL DELAYPOTENTIAL DELOPMENTAL DELAY

PHYSICAL EXAMINATIONPHYSICAL EXAMINATIONDYSMORPHIC FEATURESDYSMORPHIC FEATURES

ABNORMAL NEUROLOGICAL EXAMABNORMAL NEUROLOGICAL EXAM

GROWTH DELAYGROWTH DELAY

PARENTAL CONCERNSPARENTAL CONCERNS

Page 8: PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

THE ROLE OF THE PARENTS IN THE THE ROLE OF THE PARENTS IN THE DECTECTION OF DEVELOPMENTAL AND DECTECTION OF DEVELOPMENTAL AND

BEHAVIORAL PROBLEMSBEHAVIORAL PROBLEMS

STRONG RELATIONSHIP BETWEEN PARENTS ‘ STRONG RELATIONSHIP BETWEEN PARENTS ‘ CONCERNS AND CHILDREN’S DEVELOPMENTAL CONCERNS AND CHILDREN’S DEVELOPMENTAL STATUS STATUS (Glascoe FP,Peds In Rev 2000. Chis PJ, Peds Rev 2000)(Glascoe FP,Peds In Rev 2000. Chis PJ, Peds Rev 2000)

FINE MOTOR , LANGUAGE, COGNITIVE AND FINE MOTOR , LANGUAGE, COGNITIVE AND SCHOOL SKILLS : HIGH LEVELS OF SENSITIVITY SCHOOL SKILLS : HIGH LEVELS OF SENSITIVITY (Glacoe FP, Peds 95, 97) (Glacoe FP, Peds 95, 97)

GROSS MOTOR SKILLS AND MEDICAL / HEARING GROSS MOTOR SKILLS AND MEDICAL / HEARING STATUS : HIGHLY RELATED TO DEVELOPMENTAL STATUS : HIGHLY RELATED TO DEVELOPMENTAL PROBLEMS PROBLEMS (Glascoe FP, Clin Pediatr 91, 94)(Glascoe FP, Clin Pediatr 91, 94)

Page 9: PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

THE ROLE OF THE PARENTS IN THE THE ROLE OF THE PARENTS IN THE DECTECTION OF DEVELOPMENTAL AND DECTECTION OF DEVELOPMENTAL AND

BEHAVIORAL PROBLEMSBEHAVIORAL PROBLEMS

87% CHILDREN WITH ADHD : CONCERNS RELATED 87% CHILDREN WITH ADHD : CONCERNS RELATED TO IMPULSIVENESS, INATTENTION, OR TO IMPULSIVENESS, INATTENTION, OR OVERACTIVITY OVERACTIVITY (Mulhern et al, Am J Dis Child. 93)(Mulhern et al, Am J Dis Child. 93)

CONCERNS RELATED TO CHILDREN’S HEARING : CONCERNS RELATED TO CHILDREN’S HEARING : HIGHLY SENSITIVE INDICATOR OF HEARING HIGHLY SENSITIVE INDICATOR OF HEARING PROBLEMSPROBLEMS ( Glascoe FP, Ped 91. Diamond K , J Div Early Childhood 87) ( Glascoe FP, Ped 91. Diamond K , J Div Early Childhood 87)

ABSENCE OF CONCERNS OR CONCERNS IN OTHER ABSENCE OF CONCERNS OR CONCERNS IN OTHER AREAS ( SEL-HELP OR SOCIALIZATION) : AREAS ( SEL-HELP OR SOCIALIZATION) : CORRELATE WITH CHILDREN WITHOUT ANY CORRELATE WITH CHILDREN WITHOUT ANY PROBLEMS PROBLEMS (Glascoe FP, Am J Dis Child 89)(Glascoe FP, Am J Dis Child 89)

Page 10: PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

THE ROLE OF THE PARENTS IN THE THE ROLE OF THE PARENTS IN THE DECTECTION OF DEVELOPMENTAL AND DECTECTION OF DEVELOPMENTAL AND

BEHAVIORAL PROBLEMSBEHAVIORAL PROBLEMSPARENTAL MENTAL HEALTH : STRONG CONTRIBUTORPARENTAL MENTAL HEALTH : STRONG CONTRIBUTOR(Dulcan MK et al. J Am Acad Child Adolesc Psychiat 90. Glascoe FP, Dworking PH. Pediatrics 95)(Dulcan MK et al. J Am Acad Child Adolesc Psychiat 90. Glascoe FP, Dworking PH. Pediatrics 95)

ADVERSE EFFECTS ON CHILDREN’S HEALTH ADVERSE EFFECTS ON CHILDREN’S HEALTH – PARENTAL DEPRESSION, ANXIETY OR DISTRESSPARENTAL DEPRESSION, ANXIETY OR DISTRESS– ADDICTIONADDICTION

– PARENTAL HEALTH ISSUESPARENTAL HEALTH ISSUES ( (Riley AW et al.Med Care 93)Riley AW et al.Med Care 93)

– SOCIOECONOMIC ISSUESSOCIOECONOMIC ISSUES PARENTAL LEVEL OF EDUCATION AND EXPERIENCEPARENTAL LEVEL OF EDUCATION AND EXPERIENCE ((PARENTS COMPARE THEIR CHILDREN TO OTHERSPARENTS COMPARE THEIR CHILDREN TO OTHERS) ) (Glascoe FP et al. (Glascoe FP et al. Clin Pediatr 1991,1994. Pediatrics 91)Clin Pediatr 1991,1994. Pediatrics 91)

Page 11: PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

THE ROLE OF THE PCP IN THE DECTECTION THE ROLE OF THE PCP IN THE DECTECTION OF DEVELOPMENTAL AND BEHAVIORAL OF DEVELOPMENTAL AND BEHAVIORAL

PROBLEMSPROBLEMS

CLINICAL JUDGEMENTCLINICAL JUDGEMENTDETECTS < 30% OF CHILDRENDETECTS < 30% OF CHILDREN WITH M.R., LEARNING WITH M.R., LEARNING DISABILITIES, LANGUAGE IMPAIRMENTS DISABILITIES, LANGUAGE IMPAIRMENTS (GLASCOE FP, PED REV 2000)(GLASCOE FP, PED REV 2000)

IDENTIFIES < 50% OF CHILDRENIDENTIFIES < 50% OF CHILDREN WITH SERIOUS EMOTIONAL WITH SERIOUS EMOTIONAL AND BEHAVIORAL DISTURBANCESAND BEHAVIORAL DISTURBANCES

THE USE OF VALIDATED SCREENING TOOLS THE USE OF VALIDATED SCREENING TOOLS (<25%)(<25%)

SENSITIVITY TO PSYCHOSOCIAL PROBLEMS 70 – 80%SENSITIVITY TO PSYCHOSOCIAL PROBLEMS 70 – 80%SPECIFICITY TO NORMAL DEVELOPMENT 70 – 80%SPECIFICITY TO NORMAL DEVELOPMENT 70 – 80%20 – 30% FALSE + IDENTIFICATION 20 – 30% FALSE + IDENTIFICATION OVER-REFERRAL OVER-REFERRAL (BELOW AVERAGE: INTELECTUAL, LANGUAGE OR ACADEMIC SKILLS)(BELOW AVERAGE: INTELECTUAL, LANGUAGE OR ACADEMIC SKILLS)

Page 12: PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

THE ROLE OF THE PCP IN THE THE ROLE OF THE PCP IN THE DECTECTION OF DEVELOPMENTAL DECTECTION OF DEVELOPMENTAL

AND BEHAVIORAL PROBLEMSAND BEHAVIORAL PROBLEMS

AMERICAN ACADEMY OF PEDIATRICS‘ AMERICAN ACADEMY OF PEDIATRICS‘ COMMITTEE ON CHILDREN WITH COMMITTEE ON CHILDREN WITH DISABILITIES DISABILITIES RECOMMENDSRECOMMENDS THAT THAT PEDIATRICIANS USE VALIDATED PEDIATRICIANS USE VALIDATED SCREENING TOOLS AT EACH HEALTH SCREENING TOOLS AT EACH HEALTH SUPERVISION VISITSUPERVISION VISIT

Page 13: PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

USE OF VALIDATED SCREENING TOOLS USE OF VALIDATED SCREENING TOOLS BY THE PCPBY THE PCP

DIFFICULT TO COMPLY WITH AAP DIFFICULT TO COMPLY WITH AAP RECOMMENDATIONSRECOMMENDATIONS

MINIMAL REIMBURSEMENTMINIMAL REIMBURSEMENT

YOUNG PATIENTS ‘ LIMITED COMPLIANCEYOUNG PATIENTS ‘ LIMITED COMPLIANCE

TIME CONSTRAINTSTIME CONSTRAINTS

CONCERNS ABOUT ACCURACY AND LENGTH CONCERNS ABOUT ACCURACY AND LENGTH OF WELL-KNOWN SCREENING TOOLSOF WELL-KNOWN SCREENING TOOLS

INCONSISTENT HEALTH SUPERVISIONINCONSISTENT HEALTH SUPERVISION

ADMINISTRATION OF SCREENING TOOLS ADMINISTRATION OF SCREENING TOOLS ONLY ONLY TO SYMPTOMATIC PATIENTSTO SYMPTOMATIC PATIENTS

Page 14: PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

USE OF VALIDATED SCREENING TOOLS USE OF VALIDATED SCREENING TOOLS BY THE PCPBY THE PCP

THE MOST EFFECTIVE TOOLS ARE THOSE THAT THE MOST EFFECTIVE TOOLS ARE THOSE THAT RELY ON PARENTAL REPORTS ( DESCRIPTIONS RELY ON PARENTAL REPORTS ( DESCRIPTIONS OF CHILDREN’ SPECIFIC SKILLS)OF CHILDREN’ SPECIFIC SKILLS)– ELIMINATE THE NEED FOR OBTAINING CHILDREN’S ELIMINATE THE NEED FOR OBTAINING CHILDREN’S

COOPERATION AND EFFORTCOOPERATION AND EFFORT– PROVIDE A THOROUGH SAMPLING OF CHILDREN’S SKILLSPROVIDE A THOROUGH SAMPLING OF CHILDREN’S SKILLS– HAVE FLEXIBLE ADMINISTRATION METHODS :HAVE FLEXIBLE ADMINISTRATION METHODS :

INTERVIEWSINTERVIEWS

OVER THE TELEPHONEOVER THE TELEPHONE

SENT HOME IN PREPARATION FOR A FOLLOW UP VISITSENT HOME IN PREPARATION FOR A FOLLOW UP VISIT

SELF-ADMINISTERED IN WATING ROOMSSELF-ADMINISTERED IN WATING ROOMS

Page 15: PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

USE OF VALIDATED SCREENING TOOLS USE OF VALIDATED SCREENING TOOLS BY THE PCPBY THE PCP

MANY TOOLS ARE PUBLISHED IN SPANISH AND MANY TOOLS ARE PUBLISHED IN SPANISH AND OTHER LANGUAGESOTHER LANGUAGES

SOME HAVE OPTIONS FOR DIRECTLY ELICITING SOME HAVE OPTIONS FOR DIRECTLY ELICITING SKILLS FROM CHILDREN WHEN COMMUNICATION SKILLS FROM CHILDREN WHEN COMMUNICATION BETWEEN PARENT AND PROVIDER IS BETWEEN PARENT AND PROVIDER IS PROBLEMATICPROBLEMATIC

MANY STANDARDIZED QUESTIONAIRES ARE MANY STANDARDIZED QUESTIONAIRES ARE BRIEF, EASY TO READ, SCORE AND INTERPRETBRIEF, EASY TO READ, SCORE AND INTERPRET

Page 16: PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

USE OF VALIDATED SCREENING TOOLS USE OF VALIDATED SCREENING TOOLS BY THE PCPBY THE PCP

COMPARISONS OF PARENTS ‘ REPORTS WITH COMPARISONS OF PARENTS ‘ REPORTS WITH REPORTS BY OTHERS ARE VERY HELPFUL FOR REPORTS BY OTHERS ARE VERY HELPFUL FOR ASSESSING THE CROSS-INFORMANT ASSESSING THE CROSS-INFORMANT CONSISTENCY OF PROBLEMS ( TEACHERS, OTHER CONSISTENCY OF PROBLEMS ( TEACHERS, OTHER PARENT, ADOLESCENTS, SUBSPECIALISTS)PARENT, ADOLESCENTS, SUBSPECIALISTS)

Page 17: PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

DEVELOPMENTAL AND BEHAVIORAL SCREENING TESTS

CHILD DEVELOPMENTAL INVENTORIES

3-72 MO.THREE SEPARATE INSTRUMENTSEACH 60 YES-N0 DESCRIPTIONS10 MINUTES . Se > 75%, Sp 70%

PARENTS’ EVALUATIONS OFDEVELOPMENTAL STATUS (PEDS)

BIRTH – 8 Y10 QUESTIONSIDENTIFIES WHEN TO REFER,SCREEN, REASSURE OR MONITORMORE VIGILANT. 2 MINUTESSe 74-79%, Sp 70-80%

BEHAVIORAL/EMOTIONAL

2 ½ - 11 Y 35 SHORT STATEMENTS OF COMMON BEHAVIOR.7 MINUTESSe 80%, Sp 86%

CHILD BEHAVIOR CHECKLIST

1 ½ - 18 Y138 ITEMS. 20 – 25 MINUTESPROFILE OF BEHAVIORAL DEVIANCY ANDSOCIAL COMPETENCE. COMPUTER SCORERECOMMENDED. DIFFERENT LANGUAGES

PED REVIEW 2000 & 2002

*

*

www.ASEBA.org802-656-8313

612-929-6220

www.pedstest.com 615-226-4460

800-331-8378

Page 18: PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

DEVELOPMENTAL AND BEHAVIORAL SCREENING TESTS

TEACHER REPORT FORM

2 – 16 Y138 ITEMS. 20 – 25 MINUTESBASED ON CBCL

SOCIAL ENVIRONMENT INVENTORY

5 – 10 Y35 ITEMS. 10 MINUTESIDENTIFICATION OF FAMILY ‘ STRESSORS

YOUTH SELF-REPORT

11- 18 Y112 ITEMS. 20 – 25 MINUTESBASED ON CBCL REQUIRES 5TH GRADE READING LEVEL

CHILDREN’S DEPRESSIONINVENTORY

7 -16 Y. 10 MINUTES27 ITEMS. SELF-REPORT OF SXNOT EASILY OBSERVED BY PARENTSUNRELIABLE < 10Y

PED REVIEW 2000 & 2002

DENVER DEVELOPMENTAL SCREENING TEST II

BIRTH – 6 Y. 125 TASKS. PERSONAL-SOCIAL. FINE-MOTOR-ADAPTIVE.LANGUAGEGROSS MOTOR. TEST BEHAVIOR ITEMSVALUABLE IN SCREENING ASYMPTOMATIC AND HIGH RISK CHILDRENCOMPARE A GIVEN CHILD’S PERFORMANCE TO OTHER CHILDREN SAME AGE

*

*

Page 19: PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

THE ROLE OF THE PCP IN THE DECTECTION THE ROLE OF THE PCP IN THE DECTECTION OF DEVELOPMENTAL AND BEHAVIORAL OF DEVELOPMENTAL AND BEHAVIORAL

PROBLEMSPROBLEMS

SCREENING TOOLS ARE NOT DIAGNOSTICSCREENING TOOLS ARE NOT DIAGNOSTIC

FURTHER EVALUATION IS MANDATORY IF CONCERN IS FURTHER EVALUATION IS MANDATORY IF CONCERN IS RAISED BY THE RESULTS OF A SCREENING INSTRUMENTRAISED BY THE RESULTS OF A SCREENING INSTRUMENT

IF THE PCP IS UNCOMFORTABLE ADMINISTERING A IF THE PCP IS UNCOMFORTABLE ADMINISTERING A STANDARDIZED SCREENING TOOL, HE/SHE SHOULD REFER STANDARDIZED SCREENING TOOL, HE/SHE SHOULD REFER THE CHILD TO A DEVELOPMENTAL SPECIALIST OR THE CHILD TO A DEVELOPMENTAL SPECIALIST OR PSYCHOLOGISTPSYCHOLOGIST

IF THE EVALUATION REVEALS THAT DEVELOPMENT IS WNL, IF THE EVALUATION REVEALS THAT DEVELOPMENT IS WNL, ONLY THEN THE FAMILY COULD BE REASSURED THAT ONLY THEN THE FAMILY COULD BE REASSURED THAT THERE IS NOT CONCERNTHERE IS NOT CONCERN

Page 20: PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

EARLY INTERVENTION PROGRAM

IDENTIFICATION OF DEVELOPMENTAL DELAY

SUSPICIOUS OF DELAY OR ESTABLISHED CONDITIONS ASSOCIATED WITH HIGHPROBABILITY OF RESULTING IN DELAY

- genetic disorders- metabolic disorders-CNS abnormalities and insults-sensory impairments-attachment disorders-premature infant < 1500 grs-neonatal asphyxia

COMPREHENSIVEMULTIDISCIPLINARYEVALUATION

FEDERAL REQUIREMENTPART C, PUBLIC LAW 99-457INDIVIDUALS WITH DISABILITIESEDUCATION ACT ( IDEA )

IT DOES NOTREQUIREPARENTAL CONSENT

DESIGNED TO MEET THE NEEDS FOR CHILDREN FROM BIRTH TO THREE

CHILDREN 3 – 22 Y REFER TO CHILD FIND AT THEFL DIAGNOSTIC AND LEARNINGRESOURCES SYSTEMS (FDLRS)MIAMI DADE COUNTY PUBLIC SCHOOLS

FEDERAL ANDSTATE MANDATED

THE VALUE AND AVAILABILITY OF EARLY INTERVENTION PROGRAMS

GLASCOE FP PED REV 2000. McCARTON C. PED 98

EFFECTIVE BECAUSE DEVELOPMENTIS MALLEABLE AND READILY AFFECTEDBY THE ENVIRONMENT

Page 21: PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

EIP

TEACH MOTHERS TO INTERACT AND COMMUNICATE BETTER WITH THEIR CHILDREN

PROVIDE INFORMATION TO PARENTS ON CHILD MANAGEMENT AND DEVELOPMENT

PROVIDE APPROPRIATEEXPECTATIONS FOR CHILDRENAND GENERAL SOCIAL SUPPORT

ENHANCE THE CHILD ‘S INTELECTUAL LANGUAGE AND SOCIAL COMPETENCE

REMOVE EXTERNALRISK FACTORS

PLACE CHILDREN IN DEVELOPMENTALLY ENRICHINGSETTINGS

TRAIN PARENTS IN RESPONSIVENESS AND EFFECTIVENESS

PROVIDE CONTINOUSPOSITIVE REDIRECTIONAND FOCUSED BUILDINGSKILLS

THE VALUE AND AVAILABILITY OF EARLY INTERVENTION PROGRAMS

THE BENEFITS OF EIP CLEARLY DEPEND ON EARLY DETECTION AND EARLY REFERRAL

PED 96, 95, 97, 2001. PED REV 2000 & 2001

OPTIMIZE THEABILITIES OF THEFAMILIES TO MEETTHE SPECIAL NEEDSOF THEIR CHILDREN

Page 22: PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

SUMMARY OF FEDERAL LAWS IMPACTING SUMMARY OF FEDERAL LAWS IMPACTING EARLY INTERVENTION SERVICESEARLY INTERVENTION SERVICES

Public Law 93-112, Section 504 of the Rehabilitation Public Law 93-112, Section 504 of the Rehabilitation ActAct: Discrimination against people with disabilities when : Discrimination against people with disabilities when offering services is prohibited . ( 1973 )offering services is prohibited . ( 1973 )

Public Law 94-142: Education for All Handicapped Public Law 94-142: Education for All Handicapped Children ActChildren Act ( Renamed Education of the Handicapped ( Renamed Education of the Handicapped Act { EHA }. All children have the right to a free and an Act { EHA }. All children have the right to a free and an appropriate public education. ( 1975 )appropriate public education. ( 1975 )

Public Law 99-457, Part H ( Added to EHA ).Public Law 99-457, Part H ( Added to EHA ). Birth to Birth to Three services should be equal in all states and counties Three services should be equal in all states and counties ( 1986 ). ( 1986 ).

Page 23: PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

SUMMARY OF FEDERAL LAWS IMPACTING SUMMARY OF FEDERAL LAWS IMPACTING EARLY INTERVENTION SERVICESEARLY INTERVENTION SERVICES

Americans with Disabilities Education ActAmericans with Disabilities Education Act : in areas : in areas of public services, discriminatory practices against of public services, discriminatory practices against individuals with disabilities by employers is prohibited. individuals with disabilities by employers is prohibited. EHA is renamed the Individuals with Disabilities EHA is renamed the Individuals with Disabilities Education Act ( IDEA). ( 1990 )Education Act ( IDEA). ( 1990 )

IDEA is revised ( IDEA-R). Part H is renamed Part CIDEA is revised ( IDEA-R). Part H is renamed Part C which outlines a national program to assist each state in which outlines a national program to assist each state in establishing a system of services for children with establishing a system of services for children with developmental delays from Birth to Three years and their developmental delays from Birth to Three years and their families. ( 1997 )families. ( 1997 )

Page 24: PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

IDENTIFICATION OF THE CHILD WITH IDENTIFICATION OF THE CHILD WITH POTENTIAL DELOPMENTAL DELAYPOTENTIAL DELOPMENTAL DELAY

Page 25: PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

IDENTIFICATION OF THE CHILD WITH IDENTIFICATION OF THE CHILD WITH POTENTIAL DELOPMENTAL DELAYPOTENTIAL DELOPMENTAL DELAY

DETERMINATION OF AN ETIOLOGIC DIAGNOSIS HAS DETERMINATION OF AN ETIOLOGIC DIAGNOSIS HAS SIGNIFICANT IMPLICATIONS WITH RESPECT TO :SIGNIFICANT IMPLICATIONS WITH RESPECT TO :

PATHOGENESISPATHOGENESIS **CRITICAL QUESTIONS MOST OFTEN POSEDCRITICAL QUESTIONS MOST OFTEN POSED

PROGNOSISPROGNOSIS TO THE CLINICIAN BY THE FAMILIESTO THE CLINICIAN BY THE FAMILIES

RECURRENCE RISKSRECURRENCE RISKS

SPECIFIC MEDICAL INTERVENTIONSSPECIFIC MEDICAL INTERVENTIONS

SPECIFIC LABORATORY TESTING SHOULD BE SPECIFIC LABORATORY TESTING SHOULD BE INDIVIDUALIZEDINDIVIDUALIZED

Majnemer A., Shevell M. J of Ped 95

Page 26: PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

ETIOLOGIC YIELD OF YOUNG CHILDREN WITH ETIOLOGIC YIELD OF YOUNG CHILDREN WITH GLOBAL DEVELOPMENTAL DELAYGLOBAL DEVELOPMENTAL DELAY

0.00%

2.00%

4.00%

6.00%

8.00%

10.00%

12.00%

14.00%

16.00%

18.00%

20.00%

ce dysgen

hie

toxins

chro ano

gene syn

neu musc

neu cuta

cong inf

psych soc

sens impa

met disor

SHEVEL MI. J OF PED 2000. MAJNRMER A. J OF PED 95

21.7 % SUSPECTED DX BY REF PCP47.4% INVESTIGATION ALONE PROVIDED THE DX18.4% INFORMATION FROM HX AND P/EX

Page 27: PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

IDENTIFICATION OF THE CHILD WITH IDENTIFICATION OF THE CHILD WITH POTENTIAL DELOPMENTAL DELAYPOTENTIAL DELOPMENTAL DELAY

CBCCBC KARYOTYPEKARYOTYPE

CBGCBG FRAGILE XFRAGILE X

LACTATELACTATE EEGEEG

AMMONIAAMMONIA AUDITORY BRAIN-STEM POTENTIALSAUDITORY BRAIN-STEM POTENTIALS

SERUM AASERUM AA SOMATOSENSORY EVOKED SOMATOSENSORY EVOKED POTENTIALSPOTENTIALS

URINE OAURINE OA COMPUTED TOMOGRAPHYCOMPUTED TOMOGRAPHY

TFT’S TFT’S MAGNETIC RESONANCE IMAGINGMAGNETIC RESONANCE IMAGING

LFT’S LFT’S LEAD LEVELSLEAD LEVELS

REFER TO SUBSPECIALISTSREFER TO SUBSPECIALISTS

Filipek PA, Accardo PJ et al. Neurology 2000. Shevell MI , Majnemer A. J of Ped 2000.

Page 28: PEDIATRIC EVALUATION OF THE CHILD AT RISK FOR POTENTIAL DEVELOPMENTAL DISABILITIES GENOVEVA C. PRIETO, M.D. MIAMI CHILDREN’S HOSPITAL

ROLE OF THE PEDIATRICIANS IN ROLE OF THE PEDIATRICIANS IN FAMILY-CENTERED EI SERVICESFAMILY-CENTERED EI SERVICESAAP COMMITTEE ON CHILDREN WITH DISABILITIESAAP COMMITTEE ON CHILDREN WITH DISABILITIES

BY PROVIDING LEADERSHIP, PCP CAN HELP SET BY PROVIDING LEADERSHIP, PCP CAN HELP SET THE STANDARD OF CARE IN THEIR COMMUNITIES THE STANDARD OF CARE IN THEIR COMMUNITIES FOR CHILDREN WITH DISABILITIES OR THOSE AT FOR CHILDREN WITH DISABILITIES OR THOSE AT RISK OF DEVELOPMENTAL DELAYSRISK OF DEVELOPMENTAL DELAYS

AN ENVIRONMENT SHOULD BE CREATED IN AN ENVIRONMENT SHOULD BE CREATED IN WHICH THEWHICH THE PHYSICIAN, FAMILY , AND OTHER PHYSICIAN, FAMILY , AND OTHER SERVICE PROVIDERS WORK TOGETHER IN A SERVICE PROVIDERS WORK TOGETHER IN A CARING, COLLEGIAL, AND COMPASSIONATE CARING, COLLEGIAL, AND COMPASSIONATE ATMOSPHERE THAT ATMOSPHERE THAT ENSURES THAT EIP ARE OF ENSURES THAT EIP ARE OF HIGH QUALITY, ACCESSIBLE, CONTINOUS, HIGH QUALITY, ACCESSIBLE, CONTINOUS, COMPREHENSIVE AND CULTURALLY COMPETENTCOMPREHENSIVE AND CULTURALLY COMPETENT

PEDIATRICS 1996 & 2000.