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 JAMA. 1990;263:3035-3042 Pediatric Care Arkansas 85 Einstein 74 Harvard 96 Miami 66 U of PA 92 Texas 80 Washington 92 Yale 91 TOTAL 85 Intervention 99 85 97 81 95 87 100 103 94 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;111:651-655) only 20% of children with mental health problems identified (Lavigne et al. Pediatr. 1993;91:649 - 655) 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 Percentiles 125 120 84th 75th 115 110 105 IQ 50th 100 95 90 25th 16th 85 80 0 1 2 3 4 5 6 7+ RISKS: < HS, > 3 children, stressful events, single parent, parental mental health problems, < responsive parenting, poverty, minority status, limited social support TYPICAL DEVELOPMENT minimal psychosocial Parents risk factors often need training, and social services. BELOW AVERAGE Children DEVELOPMENT need frequent psychosocial risk enrichment tutoring, factors mentoring, DISABLED mental health, some psychosocial risk factors etc. and/or organicity Parents often need advice about behavior Children need special education, speechtherapy, etc. Challenge #5: DEALING WITH THE RESULTS OF A SCREENING TEST REFERRAL CHALLENGES • 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) 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 Developmental DX NO Denver-II YES PASS 69 8 86 FAIL 17 10 27 86 18 Sensitivity = 10/18 = 56% Specificity = 69/86 = 80% Detection rates WITH Screening Tests 70% to 80% of children with developmental disabilities correctly identified Squires et al, JDBP. 1996;17:420 - 427 80% to 90% of children with mental health problems correctly identified Sturner, JDBP . 1991; 12: 51-64 Most over-referrals on standardized screens are children with below average development and psychosocial risk factorsGlascoe, APAM. 2001; 155:54-59. 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 Can parents be counted upon to give accurate and good quality information? YES! 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 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 • 4th – 5th grade reading level so > 90% can complete 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 decisionmaking Increases attendance at well-child visits Electronic PEDS • Automated scoring, generates parent summaries, and referral letters • www.forepath.org • 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. Communication Gross Motor Fine Motor Problem solving Personal-social Scores in shaded areas, prompt a referral 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 po to ask for something Can your child play properly with small toys witho 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 ite are failed free download or online (after purchase of PEDS) www.forepath.org 2 page scoring guide takes 7 - 10 minutes to complete recommended by AAN for use after a broad-band screen is failed Three Quality Parent Report Screens Ages and Stages (0 to 6 years) Parents’ Evaluation of Developmental Status (PEDS) 0 to 8 years Modified Checklist of Autism in Toddlers (M-CHAT) 16 mos to 4 yrs. At this point we are going to talk about three brief parent-based screening tools 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 www.dbpeds.org 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 , 3 4-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 PEDIATRIC SYMPTOM CHECKLIST (PSC) 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 __ __ __ __ __ ___ ___ ___ ___ ___ __ __ __ __ __ __ ___ __ ..... 35. Refuses to share 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 Safety Word Inventory and Literacy Screener (SWILS) No Trespassing EMERGENCY FIRE ESCAPE High Voltage POISON Safety Word Inventory and Literacy Screener Age Range Years--months <6–6 6-7 to 6-10 6-11 to 7-2 Date Cutoff Results <1 <2 <3 Pass Pass Pass Fail Fail Fail /\ /\ 8-3 /\ /\to/\8-6/\ /\ /\ /\ /\ /\ /\ /\ /\ </\12/\ /\ /\ /\ /\Pass /\ /\ /\Fail /\ /\ /\ /\ 8-7 to 8-10 8-11 to 9-2 9-3 to 9-7 9-8 to 10- 4 < 12 < 14 Pass Pass Fail Fail < 15 < 16 Pass Fail Pass Fail Safety Word Inventory and Literacy Screener (SWILS) public domain longitudinal form can remain in chart takes 1 - 5 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 Addressing Psychosocial Risk on the Brigance Screens 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 60th versus 21st percentiles) Separate cutoffs and risk indicators included Screens of behavior, mental health and emotional well-being Pediatric Symptoms Checklist (4 – 18 years) Eyberg Child Behavior Inventory (2 – 11) Ages and Stages Questionnaire SocialEmotional (4 months to 60 months) Parents Evaluation of Developmental Status (ages 0 – 8)