Development of Concern! What Next ?

Development of Concern!What Next ? Utah Consortium 5/11/04 Katherine TeKolste, MD Developmental Pediatrician Center on Human Development and Disability University of Washington Seattle, Washington

WHAT TO DO: • Listen to parent concerns • Avoid the ‘Don’t worry, he’ll grow out of it.’ trap • Assess risk factors • Monitor • Give parents activities, ways to monitor and resources • IF UNSURE, REFER

Overview • Talking with parents about concerning results • Parents as partners – monitoring, referring • Further evaluation - ‘If unsure, REFER’ • Confirm/refute presence of delays • Connect with interventions • Establish etiology, if possible • Assist parents – information, support • Coordinate care

Nickel RE, Squires J, 2000. Parent Report Measure Basic Screen No Problem Suspect Problem Office screen or referral for eligibility testing Office Screen (optional) General or sub domain Suspect Problem No problem Eligibility Testing –Habilitation/Rehab Diagnostic Testing – Medical w/u Continue to monitor development Refer to services Problem No problem

Clinical Judgment • Environmental issues • Back to sleep immaturity in prone • Family stressors • Biologic risks that might be explanatory? • Residual respiratory problems in preemie with gross motor immaturities/no pathology

Options • Minor concerns – no pathology/ ‘immaturity’ • Developmental activities • Consider referral – HS/EHS, Parenting classes, support programs, activity programs • Reassess in near future • More than minor concerns or pathology • Further assessment – • In office • EI program or school district, PHD, home visit • Specialty referral

Suggestions for Talking About Screening Results • Provide information in a timely manner • Use family’s primary language, clear terms • Avoid judging cultural or linguistic differences • Explain child’s score in relation to cutoff points • Avoid using negative terminology – fail, abnormal • Emphasize results from screening • may be ‘inaccurate’ and • do not provide in depth information about a child’s abilities ASQ manual

Suggestions for Talking About Screening Results • Emphasize child’s current skills • Emphasize family skills and resources • Take time to talk about family’s perception of their child’s strengths and weaknesses • Talk to the family about additional resources and community services ASQ manual

Communication of Screening Results • (Reemphasize) focus on positives • Give activities and actions • Stress need for further evaluation, monitoring and follow-up • Help the parents to inform others

Developmental Delay vs MR • IQ testing generally not predictive until 8 years of age. • Under 6 years – generally use term ‘developmental delay’ • Some children will ‘catch up’ developmentally – but many will not • Monitor progress, inform parents

Parents as Partners • Developmental surveillance at home • Charts, brochures, books, and parent-completed tools • Developmental enhancement • Activities – e.g. Reach out and read, play groups, preschools, parenting groups, library and bookstore story times, library card/usage, literacy programs for parents

Minor Concern about Development • Provide general developmental stimulation activities – e.g. ASQ activities • Assess risk factors • Access general community resources • Schedule recheck or refer for further assessment

Social - Emotional - how children feel and how they learn to relate to others • Cognitive - how children learn and think • Language - how children learn sounds, words, and sentences • Sensory - how children hear, see, taste, smell and feel • Motor Skills - how children learn to skill to sit up, crawl, walk, and run • As you'll see, each milestone shows a range of ages typically seen in children's development, but a child may not meet every milestone and still be progressing normally. Don't be surprised if your child's growth is different from what's included on this timeline, or if your child develops more quickly in some areas than in others. Above all, enjoy learning about the many fascinating ways children develop. If you have any concerns about your child's growth and development, please seek a health care professional. http://www.talaris.org/timeline.htm This research-based timeline is organized by the child's age. It serves as a general guide to the five amazing ways a child grows, from birth to 5.

Home Page: There are two ways you can navigate the home page. • Navigating by age:Click on the age groups in the photos or at the top of the page. To see another age group: • click on another age group at the top. • click on the blue arrows near the top to go up or down by age. • use the scroll bar under the photo to move the information left or right. • Navigating by the five areas of development:These five areas are listed in boxes to the left of the photo. Just click on each box for more information about the area of development you want, and then choose an age group (see above). • Social/Emotional • Cognitive • Language • Sensory • Motor

Parent Resources • AAP Brochures • Developmental charts • Websites • Talaris website – www.talaris.org • Zero to Three www.zerotothree.org • ‘The magic of everyday moments’ brochures • CHILD Profile – www.childprofile.org – Developmental charts • First Signs – www.firstsigns.org • CDC – Natl Center on Birth Defects and DD - http://www.cdc.gov/ncbddd/autism/actearly/

AND… • Listen to parent concerns • Avoid the ‘Don’t worry, he’ll grow out of it.’ trap • Assess risk factors • Continue to monitor • Give parents activities, ways to monitor and resources • Further workup - IF UNSURE, REFER

Major Concern Perform further screening/assessment • Developmental/functional assessment • Second level screener by PCP • Refer for early intervention/school district eligibility evaluation and services • Diagnostic/etiologic work-up • Depending on level and type of concern- • PCP and/or • Refer for subspecialty consultation

Screening Methods ‘Level 2’

Level 2 Screening • Review comfort and ability to do this • Time consuming • Us. requires training in the tool used • Need consistent experience in using tool • Often not well reimbursed • But can be fun! • Language • Social-emotional/ temperament • Motor • Autism

‘Comfortable’ for PCP • Language screens • ELMS II – (0-36 mos) • MacArthur-Bates Communicative Development Inventory • Words and Gestures (Infant form; 8-16 mos) • Words and Sentences (Toddler form; 16-30 mos) • Wetherby-Prizant – CSBS-DP; Communication & Symbolic Behavior Scales (6-24 mos) • Motor screens • Infant Motor Screen – 4-16 months • Alberta Infant Motor Scale (AIMS) – birth to 18 months • Harris Infant Neuromotor Test (HINT)

Other Tests • Socio-emotional screens, behavior screens • ASQ-SE – 4m-6y • Pediatric Symptom Checklist – 4-18yo • BITSEA (Brief Infant Toddler Social-Emotional Assessment) – 1-4 years; • see Pediat in Rev, Aug 2002.; www.dbpeds.org

Committee on Children with Disabilities – Tools Discussed • Direct examination of child’s skills • Denver II • Bayley Infant Neurodevelopmental Screener (BINS) • Battelle Developmental Inventory • Brigance Screens - • CAT-CLAMS – • designed with PCPs in mind • Cognitive and language skills assessed separately • Parental report and direct testing • However, reported low sensitivity (true negatives), although very high specificity (true positives)

Committee on Children with Disabilities (cont) • Behavior and Psychosocial • TABS – Temperament and Atypical Behavior Scale • Carey Temperament Scales • Eyberg Child Behavior Inventory • Pediatric Symptom Checklist • Family Psychosocial Screening (Kemper)

AAN Autism Parameter • CHAT –Checklist for Autism in Toddlers • Developed in England for children at 18 m • Inexpensive, easy to administer, quick • 9 Parent and 5 provider items to complete • High specificity (minimizes over-referrals because does not pick up children without difficulties), relatively low sensitivity (Does not adequately identify majority of children with difficulties) • Screening only – child must be referred for further assessment • M-CHAT – Modified CHAT • 23 yes/no items • Initial screening of 1076 children – preliminary sensitivity - .87 (true positives); specificity .99 – true negatives • Use at 18 and 24 months

Autism (cont.) • PDDST-II : Pervasive Developmental Disorders Screening Test II • Parent completed, 5 minutes • Helps PCP determine if further screening needed • Less is known about sensitivity and specificity

Developmental Screening CPT Codes • 96110 – Developmental testing; limited, with interpretation and report • 99420 – Administration and interpretation of health risk assessment instrument • 96115 – Neurobehavioral status exam with interpretation and report, per hour • Every Child Deserves a Medical Home. AAP

Mental Health Screening • 96115 – Neurobehavioral status exam with interpretation and report, per hour • 96117 – Neuropsychological testing battery with interpretation and report, per hour • 96420 – Administration and interpretation of health risk assessment instrument • Every Child Deserves a Medical Home, AAP.

Refer for Further Assessment and Services • Habilitation/rehabilitation and educational services • Early Intervention Providers • School District • Therapy • Hearing Assessment • Vision Assessment • Subspecialty evaluations • Reproductive Counseling

Overview • Talking with parents about concerning results • Parents as partners – monitoring, referring • Further evaluation - ‘If unsure, REFER’ • Confirm/refute presence of delays • Connect with interventions • Establish etiology, if possible • Evaluate and treat associated medical problems (e.g. sleep disorders, spasticity, seizures) • Assist parents – information, support • Coordinate care

Further Etiologic Assessment • Handouts - 2 flow sheets for evaluation + Listing of minor dysmorphic features • References • Practice Parameter: Evaluation of the Child with Global Developmental Delay – AAN. Shevell M et al. Neurology 60:367-380, 2003. • Critical Elements of Genetic Evaluation and Genetic Counseling: Individual with global developmental delay/non-specific mental retardation. 1998. www.gemdatabase.org/GEMDatabase/WA-CE/mrdd98.htm • Diagnostic Evaluation of Developmental Delay/Mental Retardation. Battaglia A, Carey JC. Am J Med Genet. 117C:3-14, 2003. • Developmental Delay and Mental Retardation. Nickel RE. In The Physician’s Guide to Caring for Children with Disabilities and Chronic Conditions. Nickel RE, Desch LW. Eds. Paul H. Brookes Publishing Co, 2000. • Developmental Delay in Children Younger than 6 Years. Davis BE, Bennett FC. In Pediatric Decision Making, 4th Edition. Berman S, ed:. Mosby, Philadelphia, 2003.

Further Work Up for Etiology – WHY? • Estimation of recurrence risk • Accurate prognosis • Need for medical follow-up • On rare occasions – specific therapeutic interventions • Shevell MI et al. Brain and Devel. 2001.

AAN – Staged Approach to Evaluation (2003) • All children • Detailed history and PE, including autism/lang screening • Vision and audiologic examination • Check newborn screening results or consider metabolic screening • Capillary blood gas • Serum lactate and ammonia levels • Serum amino acids • Urine organic acids • Thyroid function tests (T4, TSH)

AAN – Staged Approach to Evaluation (2003) • EEG, if suggestive history for Sz or underlying epilepsy syndrome • If history of lead exposure – lead screening • If family history of specific disorder – screen for that disorder • Family history nonspecific – • If dysmorphic features – karyotype • If CP, microcephaly, focal findings, focal Sz, or concern about CNS injury/malformation – MRI/CT scan

AAN – Staged Approach to Evaluation (2003) • No clinical features to suggest a specific diagnosis less likely to find a diagnosis • Consider MRI, cytogenetic studies and Fragile X screening. If these are negative, consider metabolic history and screening, subtelomeric rearrangement testing and genetic consultation • Parental consanguinity, history of fetal loss, or developmental regression  • Consider metabolic eval, neuroimaging, EEG, cytogenetic studies, and consultation with genetics and ophthalmology

Indications for Chromosomal Analysis • Two or more major malformations or combination of major and minor malformations • DD and 3 or more minor anomalies • DD and under- or over-growth • DD and marked hypotonia • Conotruncal congenital heart defect (r/o 22q11 deletion) • Ambiguous genitalia • Maternal history of ≥3 early pregnancy losses • Nickel RE, Desch LW. Eds. The Physician’s Guide to Caring for Children with Disabilities and Chronic Conditions. 2000.

Delays Confirmed • Family needs • Intervention • Family stress, emotional and behavioral issues • Resources • Equipment • Financial assistance • Respite care • Case management • Referrals and coordination of care • Transition support • Information • Diagnosis Specific – including risks for future offspring • Support and empowerment • Parent organizations – e.g. Family Voices, Parent-to-Parent

Parent ranking Community resource info Financial info Parent support groups Recreational opportunities Psychological services Vocational counseling Summer camps Dental treatment Respite care Help with behavior problems Physician view of what families want! Respite Day care Parent support groups Help with behavior problems Financial information After school child care Help with physical/household changes Vocational counseling Psychological services Top 10 Services Needed Liptak G, Revell G Pediatr 84:465, 1989.

Parent – Web Resources • www.ddhealthinfo.org – excellent information on specific disorders and general issues related to DD • www.familyvoices.org • Transition timelines – chronic disease/DD - http://depts.washington.edu/healthtr/Timeline/timeline_instr.htm (English, Spanish, Russian, Vietnamese, Chinese) • Others

Focus on strengths and maximal independence

Care Coordination Issues – EI Programs • One third (36%) of pediatricians think lack of feedback from the EI program about child progress/outcomes is a barrier to EI referral • About half of pediatricians report: • Notification of receipt of referral (47%) • Receiving IFSP and progress report (51%) • Informs of reasons for enrollment decisions (53%) • Notifies of child’s discharge from program (46%) • AAP Periodic Survey of Fellows #53. 2004.

Care Coordination Issues • Knowledge of resources – panel and handouts today • Information transfer • Communication forms • Referral forms • “Blue Organizer” – patient/family facilitated • ?Electronic formats (Whatcom Co. ‘Pursuing Perfection’ grant) • Emergency Room forms for CSHCN, and other tools at www.medicalhomeinfo.org

Summary • Listen to parent concerns • Assess risk factors • Monitor • Give parents activities and resources • IF UNSURE, REFER

Development of Concern! What Next ?