Early Detection of Developmental and Behavioral Problems in Primary Care Frances Page Glascoe Adjunct Professor of Pediatrics Vanderbilt University

Medicaid EPSDT requires screening for developmental and mental health status AAP recommends routine standardized developmental and behavioral screening IDEA requires child-find in every state

Early Intervention Efficacy Pediatric Care Intervention Arkansas8599 Einstein7485 Harvard9697 Miami6681 U of PA9295 Texas8087 Washington Yale TOTAL8594 JAMA. 1990;263:

Early Intervention Benefits: Rationale For Screening Family interest in participation Better outcomes for participants: Higher graduation rates, reduced teen pregnancy, higher employment rates, decreased criminality and violent crime $30,000 to >$100,000 benefit to society (1992 $$s) For every 1$ spent on EI, society saves 13$

Detection rates without screening tests only 30% of children with developmental disabilities identified before K (Palfrey et al. J PEDS. 1994;111: ) only 20% of children with mental health problems identified (Lavigne et al. Pediatr. 1993;91: )

Challenge #1: CHECKLISTS

Sample Checklist Uses hungry, tired, thirsty Climbs stairs without holding on Stacks 12 blocks Knows colors Dresses self completely Plays games with rules

Challenge #2: COMMUNICATING WITH FAMILIES

“Your teacher wishes me to delineate those watershed occasions in your life that have led you to become, slowly and inexorably, a loose cannon.”

Challenge #3: CLINICAL JUDGMENT

Challenge #4: DEVELOPMENT ITSELF

Effects of Psychosocial Risk Factors on Intelligence IQ RISKS: 3 children, stressful events, single parent, parental mental health problems, < responsive parenting, poverty, minority status, limited social support 50 th 25 th 16 th Percentiles 84th 75th

TYPICAL DEVELOPMENT minimal psychosocial risk factors BELOW AVERAGE DEVELOPMENT frequent psychosocial risk factors DISABLED some psychosocial risk factors and/or organicity Parents often need advice about behavior Parents often need training, and social services. Children need enrichment tutoring, mentoring, mental health, etc. Children need special education, speech- therapy, etc.

Challenge #5: DEALING WITH THE RESULTS OF A SCREENING TEST

50% - 80% of children who fail screens are not referred (Rushton et al, APAM, 2002) > 80% of referrals from primary care providers made only to familiar services (Glade, Forrest et al Amb Peds, 2002) Nonmedical providers may not respond like the ideal subspecialist (Forrest et al APAM, 1999) REFERRAL CHALLENGES

Challenge #6: FAILURE TO USE A HIGH QUALITY SCREENING TEST

Screening sorts those who probably have problems from those who probably don’t

Standardized on a national samploe Proof of reliability Evidence of validity Accuracy, i.e.: Sensitivity of 70% to 80% Specificity of 70% to 80%

Accuracy of the Denver-II Denver-II PASS 86 FAIL Specificity = 69/86 = 80% Developmental DX NO YES Sensitivity = 10/18 = 56%

Detection rates WITHScreening Tests 70% to 80% of children with developmental disabilities correctly identified Squires et al, JDBP. 1996;17: % to 90% of children with mental health problems correctly identified Sturner, JDBP. 1991; 12: Most over-referrals on standardized screens are children with below average development and psychosocial risk factors Glascoe, APAM. 2001; 155:

Reasons for limited use of screening tests at well visits: COMMON MYTHS common screening tests too long many difficult to administer children uncooperative reimbursement and time limited referral resources unfamiliar or seemly unavailable challenges of giving difficult news

“Looking Good”

So what should we do? Use newer, brief, accurate tools Make use of information from parents

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!

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

Three Quality Parent Report Screens Parents’ Evaluation of Developmental Status (PEDS) 0 to 8 years At this point we are going to talk about three brief parent-based screening tools Ages and Stages (0 to 6 years) Modified Checklist of Autism in Toddlers (M-CHAT) 18 mos to 4 yrs.

PARENTS’ EVALUATION OF DEVELOPMENTAL STATUS A Method for Detecting and Addressing Developmental and Behavioral Problems For children 0 to 8 years In English, Spanish, Vietnamese, Somali, Chinese, and many other languages Takes about 5 minutes for parents to complete Takes 2 minutes to score Elicits parents’ concerns Uses same 10 questions at each visit Sorts children into high, moderate or low risk for developmental and behavioral problems 4 th – 5 th grade reading level so > 90% can complete independently

PEDS’ Evidenced Based Decisions when and where to refer (e.g., mental health services, speech-language or developmental/school psychologists) when to screen further (or refer for screening) when to offer developmental promotion when to provide behavioral guidance or refer for mental health services when to observe vigilantly when reassurance and routine monitoring are sufficient

“ Oh, by the way …..” Reduces “doorknob concerns” Focuses visit and facilitates patient flow Improves parent satisfaction and positive parenting practices Increases provider confidence in decision- making Increases attendance at well-child visits

Electronic PEDS Automated scoring, generates parent summaries, and referral letters Web accessible PEDS for –Licensed PEDS users –Self-selected parents PEDS scoring Web service for EMR/EHR and other electronic systems

Subject Information

Parent Information

PEDS Questions

M-CHAT (optional)

Results (record)

Results (parent information)

Letter of Referral

Resources for Parents

Data Resources All demographics captured De-identified datasets available for research (subject to IRB and HIPPA) Multiple formats available (SQL, text, Excel, etc) Raw or aggregated data

Flexible Works with several workflow approaches Adaptable to licensee’s level of automation –Faster screening and analysis for paper-based organizations –Can be fully integrated with licensee’s electronic systems –– or anything in between Referral letters and parent information sheets are fully customizable for each licensee or locale Many options for collection of research data

Ages and Stages Questionnaire (ASQ) 4 months to 6 years 19 color-coded questionnaires, each 6 –7 pages long for use at 4, 6, 8, 10, 12, 14, 16, 18, 20, 22, 24, 27, 30, 33, 36, 42, 48, 54, and 60 months 30 – 35 items per form describing skills Completed by parent report Taps most domains of development Takes about 15 minutes, and 5 to score ASQ-Social-Emotional works similarly and measures behavior, temperament, etc.

ASQ Sample Items 3. Using the shapes below to look at, does your child copy at least three shapes onto a large piece of paper using a pencil or crayon, without tracing? Your child’s drawings should look similar to the design of the shapes below, but they may be different in size. Yes Sometimes Not Yet   

ASQ Scoring  Assign a value of 10 to yes, 5 to sometimes, 0 to never  Add up the item scores for each area, and record these totals in the space provided for area totals.  Indicate the child’s total score for each area by filling in the appropriate circle on the chart below.  Scores in shaded areas, prompt a referral Communication Gross Motor Fine Motor Problem solving Personal-social

Other Features Instructional video Curriculum linkage guide Multiple language translations CD-ROM scoring May be online in the near future

Modified Checklist of Autism in Toddlers (M-CHAT)  23 yes-no questions  Measures social reciprocity, language, some motor  18 months to 4 years of age  Detects ASD, language impairment, MR

M-CHAT Sample Items  Does your child ever use his/her index finger to point, to ask for something  Can your child play properly with small toys without just mouthing, fiddling, or dropping them?  Does your child take an interest in other children?

M-CHAT Details  failing score if 2 or more critical items or any 3 items are failed  free download or online (after purchase of PEDS) at  2 page scoring guide  takes minutes to complete  recommended by AAN for use after a broad-band screen is failed

Three Quality Parent Report Screens Parents’ Evaluation of Developmental Status (PEDS) 0 to 8 years At this point we are going to talk about three brief parent-based screening tools Ages and Stages (0 to 6 years) Modified Checklist of Autism in Toddlers (M-CHAT) 16 mos to 4 yrs.

in the handout for this talk you will find: Procedures and diagnosis codes for billing Sources for patient education materials Information about obtaining the various screens A guide to explaining test results Information on organizing offices for efficient screening and developmental promotion Information on referral resources How to lead a screening initiative in a practice

Implementing Screens in Primary Care Educate staff on importance of screening Allow input into workflow Be creative in tool selection Locate and get to know referral resources Organize patient education and referral materials

Take Home Messages Screening tests are workable in primary care Quality screens improve detection rates, fold Developmental services are available Non medical providers need guidance on how best to work with medical providers Office Staff need to be engaged Parent education and referral materials are essential

PEDIATRIC SYMPTOM CHECKLIST (PSC) For children 4 – 18 Screens for mental health and behavioral problems Presents parents with a list of problematic behaviors Produces four distinct factors: Internalizing (depressed, withdrawn, anxious) Externalizing (conduct, problem behavior, etc.) Attentional (impulsivity, distractibility, etc.) Academic/Global Takes about 7 minutes for parents to complete Takes 4 –5 minutes to score factors Available in English, Spanish and Chinese

NEVER SOMETIMES OFTEN 1. Complains of aches or pains__ ___ __ 2. Spends more time alone__ ___ __ 3. Tires easily, little energy__ ___ __ 4. Fidgety, unable to sit still__ ___ __ 5. Has trouble with a teacher __ ___ __ Refuses to share__ ___ __ PEDIATRIC SYMPTOM CHECKLIST (PSC)

PSC Scoring 1. Assign a value of 0 to Never, 1 to Sometimes, and 2 to often 2. Add scores 3. If ages 4 & 5, omit items 5,6,17, and 18. If value is > 24 refer. For older children, > 28 indicates need for referral. 4. View factor scores if scores are above cutoffs.

Safety Word Inventory and Literacy Screener (SWILS) 22 common signs and safety words Number correct is compared to a cutoff for age 6 – 14 years of age May serve as a springboard to injury prevention counseling

No Trespassing EMERGENCY FIRE ESCAPE High Voltage POISON Safety Word Inventory and Literacy Screener (SWILS)

Age Range Years--months Date Cutoff Results < 6 – to to 7-2 < 1 < 2 < 3 Pass Fail < 12 < 14 Pass Fail 9-3 to to < 15 < 16 Pass Fail Safety Word Inventory and Literacy Screener 8-3 to to to 9-2 /\ /\ /\ /\ /\ /\ /\ /\ /\ /\ /\ /\ /\ /\ /\ /\ /\ /\ /\ /\ /\ /\ /\ /\ /\ /\ /\

Safety Word Inventory and Literacy Screener (SWILS) public domain longitudinal form can remain in chart takes minutes requires direct elicitation high correlations with reading comprehension, basic reading and math recent publication so no utilization studies

Conforms to Head Start Framework Takes 10 – 15 minutes of professional time Produces a range of scores across domains Detects children who are delayed as well as advanced 9 separate forms across 0 – 7 years of age Each produces 100 points and is compared to an overall cutoff Available in multiple languages Computer scoring software and online version for data aggregation Items linked to IED for initial instructional planning

Can be administered by interview and/or direct elicitation Separate form for 0 through 11 months, 12 through 23 months Provides scores for 6 developmental domains: fine/gross motor, receptive/expressive language, self-help, social-emotional Detects children who are delayed as well as advanced Can plot progress over time Includes examiner observations of psychosocial risk Includes a small materials kit (you’ll add crackers)

For children 2 – 7 years 1 form per each year of age Takes 10 – 15 minutes of professional time All items require direct elicitation Blocks, crayons, provided Samples all developmental domains, with increasing emphasis on better predictors of school success: language and academics

The majority of children at-risk fail screens If recently enrolled in programs, children need a chance to learn before making referral decisions Programs need to be able to identify the subset in need of immediate referral Risk impact becomes visible by 6 months of age Associated with limited verbalization from parent (developmental skills at 60 th versus 21 st percentiles) Separate cutoffs and risk indicators included Addressing Psychosocial Risk on the Brigance Screens

Pediatric Symptoms Checklist (4 – 18 years) Eyberg Child Behavior Inventory (2 – 11) Ages and Stages Questionnaire Social- Emotional (4 months to 60 months) Parents Evaluation of Developmental Status (ages 0 – 8) Screens of behavior, mental health and emotional well-being