Surveillance and Screening Partnerships and Advocacy: Integrated Services in the Early Years Jill...

Surveillance and Screening

Partnerships and Advocacy: Integrated Services in the Early Years

Jill Houbé, MD, MPhil, FAAP, FRCP(C)

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Surveillance and Screening

• Current child health status

• Definition of terms

• Tools and experience

• Partnerships and advocacy

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BC Child Health Status

• Outcome measures

• Process measures

• Social determinants

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Healthy Child Development

Domains directly related to adult well-being:

–Socio-emotional

–Language/cognitive

–Physical health

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Early Development Instrument (EDI)

• Kindergarten year

• 5 scales

• Vulnerable if below “BC cut-offs” 10%

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BC EDI Results

• No neighbourhood is immune

• Vulnerability ranges from 13.4% to 39.6%

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Corrected EverRiskMap

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Why Does Early Identification Matter?

• Documentation of benefits– for physical handicaps, mental retardation

• improved family functioning– for environmental risk (e.g., Head Start)

• decreased likelihood of grade repetition• less need for special education services• fewer dropping out of school

• Clearer delineation of adverse influences• low-level lead exposure• adverse parent-infant interaction

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Why Does Early Identification Matter?

Legal Mandate• Canadian Charter of Rights and

Freedoms (1985)− Section 7 Legal rights− Section 15 Equality Rights

• BC Human Rights Code (1996)

• BC School Act (revised 1989)

Guralnick 1987

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Child Health Status

• 16% of children have disabilities

• 20 – 30% detected before school entrance

• There are known risk factors for delay and disability

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NORMALGuidanc

e

•Therapy•Special Ed

BELOW AVERAGE

DISABLED

Glascoe, 1997

•Parenting•Mental health•Enrichment

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Effects of Psychosocial Risk Factors on Intelligence

80

85

90

95

100

105

110

115

120

125

0 1 2 3 4 5 6 7+

IQ

Risk Factors Poor health status, > 3 children, stressful events, single parent, parental mental health problems, less responsive parenting, poverty, minority status, limited social support

50th

25th

16th

Percentiles

84th 75th

Glascoe, 1997

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Surveillance and Screening

• Current child health status

• Definition of terms

• Tools and experience

• Partnerships and advocacy

Surveillance and Screening

Hand in Hand

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Developmental Surveillance

“…flexible, continuous process in whichknowledgeable professionals perform skilledobservations of children ...

With proper techniques, surveillance is family-focused, accurate, efficient, …”

Dworkin, 2004

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Developmental Surveillance

• Eliciting/attending to parents’ concerns

• Obtaining a relevant developmental history

• Skillfully observing children’s development

• Sharing opinions with other professionals

Dworkin, 2004

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Developmental Surveillance

Children’s developmental competencies are best determined over time

– “spurts” and pauses

– variable rate across domains

– longitudinal aspect of health supervision

Dworkin, 2004

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Attending to Parents’ Concerns

• There is a strong relationship between parents’ concerns and child’s developmental status

• Parents have high levels of sensitivity for problems regarding fine motor, language, cognitive and school skills

• Parental concerns about gross motor, hearing and medical status are highly related to developmental problems

Dworkin, 2001

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DEVELOPMENTAL SURVEILLANCEParents’ Appraisals

• In 87% of children with ADHD, parents have concerns related to impulsiveness,

inattention or over activity

• Absence of parental concerns or concerns in other areas (self-help or socialization) correlates with children without

developmental disorders

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DEVELOPMENTAL SURVEILLANCEElicit Parents’ Opinions and Concerns

• Information available from parents– Appraisals (opinions of children’s

development)• concerns• estimations• predictions

– Descriptions• recall• report

Dworkin, 2004

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DEVELOPMENTAL SURVEILLANCEParents’ Appraisals

• Concerns– accurate indicators of true problems

• speech and language• fine motor• general functioning (“he’s just slow”)

– self-help skills, behavior less sensitive

• “Please tell me any concerns about the way your child is behaving, learning, and developing”– “Any concerns about how she…”

Dworkin, 2004

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DEVELOPMENTAL SURVEILLANCEParents’ Appraisals

• Estimations– “Compared with other children, how old would you

say your child now acts?”– correlate well with developmental quotients

• cognitive, motor, self-help, academic skills• less accurate for language abilities

• Predictions– likely to overestimate future function

• if delayed, predict average functioning• if average, “presidential syndrome”

Dworkin, 2004

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• Recall of developmental milestones– notoriously unreliable– reflect prior conceptions of children’s

development– accuracy improved by records, diaries– even if accurate, age of achievement of

limited predictive value

Dworkin, 2004

DEVELOPMENTAL SURVEILLANCEParents’ Descriptions

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DEVELOPMENTAL SURVEILLANCEParents’ Descriptions

• Report– accurate contemporaneous descriptions of current

skills and achievements– importance of format of questions

• recognition: “Does your child use any of the following words…”

• identification: “What words does your child say?”– produces higher estimates than assessment

• child within a familiar environment• skills inconsistently demonstrated

Dworkin, 2004

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Developmental Surveillance

Eliciting Parents’ Opinions and Concerns

Caveat: Detection without referral/intervention is ineffective and may be judged unethical

Dworkin, 2004

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Developmental Surveillance

An appropriate response to parents’ behavioral concerns is to seek additional information about children’s development

– important indicators of children’s status

– need for cautious interpretation

Dworkin, 2004

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Opinions of other professionals offer valuable information regarding children's developmental functioning

– input from preschool teachers, child care providers, visiting nurses

– preschool teachers’ predictions of school readiness, kindergarten success

Dworkin, 2004

Developmental Surveillance

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Screening

• Identify the likelihood of a disability

• Do not provide a diagnosis

• Can help identify a range of possible diagnoses that help focus referrals

Prieto 2004

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Screening• Brief

• Standardized administration

• Proven valid & reliable

• For the asymptomatic

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Detection rates: No risk factors and no screening

• 30% of developmental disabilities

• 20% of mental health problems

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Detection rates: No risk factors and screening

• 70–80% dev disabilities

• 80–90% mental health problems

• Over referrals related to psychosocial risk

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Surveillance and Screening

• Current child health status

• Definition of terms

• Tools and experience

• Partnerships and advocacy

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PDQDenver-II

Early Screening ProfileDIAL-III

Early Screening InventoryELM

Gesell

Due to absence of validation, poor validation, norming on referred samples, and/or poor sensitivity/specificity

Glascoe, 1997

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Six Quality Tests1. Parents’ Evaluation of Developmental Status

(PEDS) (0 through 8 years)

2. Child Development Inventories (CDIs) (0 to 6 years)

3. Ages and Stages (0 to 6 years)

4. Pediatric Symptom Checklist (PSC) (4 through 18 years)

5. Brigance Screens (0 to 8 years)

6. Safety Word Inventory and Literacy Screener (SWILS ) (6 – 14 years Glascoe, 1997

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Screen Selection Flow Chart

Age Range 0–4 yrs 4–6 yrs 6–8 yrs 8–18 yrs

PEDS orCDIs or ASQorBrigance

PEDS orCDIs orASQ orBrigance( + PSC)

PEDS orBrigance or SWILS( + PSC)

SWILSand/or PSC

Glascoe, 1997

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Behavioral/Emotional Screening

• Pediatric Symptom Checklist (PSC)

• Eyberg Child Behavior Inventory

• Family Psychosocial Screening

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Can parents read well enough to fill out screens?

• Usually! But first ask,

“Would you like to complete this on your own or have someone go through it with you?”

• Also, double check screens for completion and contradictions

Glascoe, 1997

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• Screens using parent report are as accurate as those using other measurement methods

• Tests correct for the tendency of some parents to over-report

• Tests correct for the tendency of some parents to under-report.

Can parents be counted upon to give accurate and good quality information?

YES!

Glascoe, 1997

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When Should You Ask for Further Evaluation?

Sudden Unexpected Change In Developmental Trajectory

• Unexplained regression

• Sudden change in personality

• Change in mood or emotional well-being

– May be due to disease or illness – May reflect important events occurring at home

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When Should You Ask for Further Evaluation?

• Global Developmental Delay – Persistent significant delay in all domains that cannot be

attributed to other known factors

• Delays in a sphere of development that adversely impact the child’s functioning

– At home – Daycare – School

• Significant Emotional Concerns

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What Do You Ask For?

• Community health unit and GP– Hearing screen– Vision screen– Speech and language evaluation – Paediatrician referral

• Infant Development Program

• Child Development Centre

• Sunny Hill Health Centre

• BC Children’s Hospital Child Psychiatry

• School Principal and Individual Education Plan

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Sunny Hill Health Centre Outpatient Clinics

• School Consults & SERT Team (Substance Exposure Resource Team)

• Brain Injury• Craniofacial Clinic, Downtown Eastside Clinic &

SERT Team• Visually Impaired Program• Preschool and Developmental-Genetics Clinic• Hearing Loss Team• SERT Team• Neuromotor/Spasticity/Feeding• Provincial Autism Program

http://www.sunny-hill.bc.ca/sunnyhill/shhcc/default.asp

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Alan Cashmore Centre• Child-Family Therapy Centre (604) 454-1676

• Under umbrella of services provided by Vancouver Coastal Health

• Parent Infant Program – home based therapy for mother/family/infant having difficulties in the initial stage of their relationship (birth to 30 months of age)

• Parent Child Therapy Program – therapy services for families finding it challenging to care for their young child (21/2 to 7 years of age)

• Parent Child Day Program – intensive services for families experiencing a significant social, emotional and/or behavioral difficulties in parenting their young child (2 ½ to 6 years)

• Childcare Centre Outreach program – consultation and support to childcare staff in their own centres in managing children with social, emotional and/or behavioral challenges.

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Mental Health Services

• Alan Cashmore Centre Child-Family Therapy Centre (604) 454-1676

• BC Psychological Association - www.psychologists.bc.ca

• UBC Psychology Clinic - http://www.psych.ubc.ca/clinic/

• SFU Psychology Clinic 604-291-4720

• New Westminster Counselling – Tel: (604) 525-6651

– Treatment is free and patients can self-refer

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Other Sources of Information

• MCFD website - http://www.mcf.gov.bc.ca/

• Redbook - http://www2.vpl.vancouver.bc.ca/dbs/redbook/htmlpgs/home.html

• Community Brain Injury Program coordinated by Center for Abilities

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Psychiatry Clinics At BC Children's Hospital

• Psychiatry• Mood Disorders Clinic• Neuropsychiatry Clinic• Attention Deficit Hyperactivity

Disorder Clinic• Infant Psychiatry• Urgent Assessment

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Surveillance and Screening

• Current child health status

• Definition of terms

• Tools and experience

• Partnerships and advocacy

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Who does what?• Look where children are

found

• Use a valid, reliable tool

• Talk to other people

• Document

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Current practices• Local initiatives

• Targeted clinical risk

• Only 1 in 3 BC children with developmental disorder receive screening/ assessment/intervention

• IDP/CDC

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Research and Experience

• CHILD

• Neonatal Follow-Up Program

• Early Hearing Program

• BC Healthy Child Development Alliance

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Advocacy• Public awareness

• Training

• Policy– Wait lists– Database

• Public Health Act 2007?

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Acknowledgements• Hillel Goelman and Clyde Hertzman:

CHILD and HELP

• BC Healthy Child Development Alliance

• Neonatal Follow-Up Program

• Dana Brynelsen and IDP

• Sunny Hill Foundation

• CFRI

jhoube@cw.bc.ca

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References

• Glascoe, Peds In Rev 2000. Chis, Peds Rev 2000• Glascoe, Peds 95, 97; Glascoe, Ped 91. Diamond , J Div Early Childhood 87• Glascoe, Clin Pediatr 91, 94• Mulhern et al, Am J Dis Child. 93• Glascoe FP, Am J Dis Child 89• Perrin E. J Dev Behav Pediatr 1998; 19: 350-352• Palfrey et al. J PEDS. 1994;111:651-655• Lavigne et al. Pediatr. 1993;91:649 – 655• Sturner, JDBP . 1991; 12: 51-64• Glascoe, APAM. 2001; 155:54-59• http://cshcnleaders.ichp.edu/Presentations/screening.htm#PowerPoint%20Presentati

ons• http://www.aap.org/catch/6• www.dbpeds.org

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References• American Academy Of Pediatrics. Committee on Children With Disabilities

Developmental Surveillance and Screening of Infants and Young Children Pediatrics. 2001;108:192-196. http://www.aap.org/policy/re0062.html

• Dworkin PH. British and American Recommendations for Developmental Monitoring: The Role of Surveillance. Pediatrics. 1989;84:1000 1010

• Dworkin PH. Detection of behavioral, developmental, and psychosocial problems in pediatric primary care practice. Curr Opin Pediatr. 1993; 5: 531-536.

• Dworkin PH. Detection of behavioral, developmental, and psychosocial problems in pediatric primary care practice. Curr Opin Pediatr. 1993; 5: 531-536.

• Frankenburg WK. Selection of diseases and tests in pediatric screening. Pediatrics. 1974;54:1-5.

• Glascoe FP, Dworkin PH. Obstacles to Effective Developmental Surveillance: Errors in Clinical Reasoning. Journal of Developmental and Behavioral Pediatrics. 1993;14:344-349.

• Glascoe FP. Toward a Model for An Evidenced-Based Approach to Developmental/Behavioral Surveillance, Promotion and Patient Education. Ambulatory Child Health, 1999, 5; 197-208

• Glascoe, F.P. (2000). Early detection of developmental and behavioral problems. Pediatrics in Review, 21, 272-280.

• Meisels SJ, Provence S. Screening and Assessment. Guidelines for Identifying Young Disabled and Developmentally Vulnerable Children and Their Families. Washington, DC: National Center for Clinical Infant Programs; 1989

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References• Dobos AE, Dworkin PH, Bernstein B: Pediatricians’ approaches to

developmental problems: Has the gap been narrowed? J Dev Behav Pediatr 1994;15:34-38.

• Dworkin PH, Glascoe FP: Early detection of developmental delays. Contemp Pediatr 1997;14:158-168.

• Dworkin PH: Prevention Health Care and Anticipatory Guidance, in: Shonkoff JP, Meisels, SJ, eds. Handbook of Early Childhood Intervention. Second Edition. Cambridge, Cambridge University Press, 2000.

• Frankenburg WK, Dodds J, Archer P, et al: A major revision and restandardization of the Denver Developmental Screening Test. Pediatrics 1992;89:91-97.

• Glascoe FP, Dworkin PH: The role of parents in the detection of developmental and behavioral problems. Pediatrics 1995;95:829-836.

• Squires J, Nickel RE, Eisert D: Early detection of developmental problems: strategies for monitoring young children in the practice setting. J Dev Behav Pediatr 1996; 17:420-427.