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Identifying Patients with Special Needs Developmental Surveillance & Screening |
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This page was last modified on : 02/08/2010 |
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Developmental Surveillance & Screening:
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How to Monitor Development in the Primary Care Practice (Click on the topic for more information) |
3. Monitor development with surveillance and screening 4. Give parents activities, monitoring tools and resources
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Listen to Concerns- Avoid the "Don't Worry, (S)he'll Grow Out of It" Trap
When a parent expresses concern about a child’s development, there is a good chance there is something that needs attention.
Parental concerns are particularly likely to be accurate in the areas of speech and language skills, cognitive performance, and fine motor skills.
When parents gather at ‘Conversations with Families’ [a discussion and networking forum for families participating in early intervention services (Infant Toddler Early Intervention Program) in Washington state], a theme repeated throughout the state is the parents’ perception of having been worried about their child’s development but not feeling heard by their health care provider when those concerns were expressed. Similar concerns have been noted by Head Start providers who indicate having screened a child’s development and suggested parents follow up with a medical provider only to have the concerns minimized or dismissed.
It is also important to recognize that 20-25% of parents do not raise concerns when delays are present.
For more information: Glascoe FP. Parents concerns about children’s development: prescreening technique or screening test? Pediatrics. 1997. 99(4):522-528.
Biologic and environmental factors may place a child at higher risk for poor developmental outcome. Children and families for whom these risk factors are present should be monitored especially closely. A child with an established diagnosis associated with a high likelihood of developmental delay (e.g. Down syndrome or autism) should be referred for early intervention services promptly upon diagnosis. The following are examples of other common risk factors:
Prenatal factors
- Maternal PKU or HIV
- Prenatal teratogen exposure (e.g. Dilantin or valproate)
- Prenatal alcohol or substance abuse
- Major congenital anomalies
- Multiple minor physical anomalies
- Small for gestational age
- Maternal tobacco use
- Lack of prenatal care
(The risk of prematurity and subsequent developmental disabilities is 3-5 times greater in children born to women who do not receive prenatal care.)
- Family history of deafness or early hearing loss
Perinatal and Postnatal Factors
- Birth weight 2500 grams or less, especially if less than 1500 grams
- Respiratory distress requiring mechanical ventilation
- Asphyxia - Apgar score of four or less at 5 minutes
- Neonatal seizures
- Intracranial hemorrhage or periventricular leukomalacia
- Hyperbilirubinemia - levels requiring exchange transfusion
- Microcephaly or macrocephaly (more than 2SD above or below mean)
- Central nervous system infection
- Congenital infection (TORCHeS)
- Abnormal neonatal neurologic exam
- Failure to thrive
- Maternal age less than 16 years
- Parental mental retardation
- Parental psychiatric disorder - [Helpful Link: Screening for Maternal Depression]
- Parental alcohol or substance abuse
- Lack of permanent housing
- Inadequate care giving
- History of abuse or neglect in parent or sibling
- Extreme poverty
Monitor Development with Surveillance and Screening
Developmental Surveillance
Developmental surveillance is an informal, yet structured monitoring of developmental status over time. The primary care provider must interpret information in light of environmental, social and medical factors affecting the child. Developmental surveillance relies upon information obtained from multiple sources, including assessment of parental concerns and formal developmental screening. Although they should not be the primary method of assessing development, checklists with red flags in development may be useful (see the following examples: www.metrokc.gov/health/kgc/redflags-checklist.doc
- a general checklist; Motor Red Flags, Speech and Language Red Flags), especially at interim visits when formal developmental screening is not utilized.
See also: Developmental Surveillance and Screening of Infants and Young Children. AAP
Committee on Children With Disabilities. Pediatrics. 108(1):192-196, 2001.
Developmental Screening
Developmental screening is the brief assessment of developmental status utilizing a standardized instrument.
Detection of developmental problems will never be perfect, even with the currently available standardized screening instruments listed below. All of these screening tools have good psychometric properties including sensitivity and specificity, validity and reliability. Yet, over-referral (child who is sent for further testing and is found to be developing ‘normally’) and under-referral (delayed child who is not identified as needing further assessment) will occur. Under-referrals are minimized by the overall surveillance process, i.e. monitoring development over time.
It is important to recognize that children who are ‘borderline’ in their skills (sometimes included in the ‘over-referral’ group) are at high risk for poorer developmental outcomes even if they do not qualify for early intervention/special education or therapy assistance.
Early involvement in developmental activities, preschool experiences, and other activities can positively impact the child’s learning and achievement. There are resources - from parent websites and handouts, to Head Start programs and more - that can assist parents and their children with borderline range skills.
Identification of developmental delay is improved when explicit developmental screening procedures are used.
- Without use of standardized tools only 30% of children with developmental disabilites are identified. This rises to 70-80% of children identified when standardized tools are used. (Refs. Palfrey et al. J Pediatr. 111:651-655, 1994; Squires et al. JDBP. 17:420-427, 1996.)
- Without use of standardized tools only 20% of children with mental health problems are identified. 80-90% are identified with the use of standardized tools (Refs. Lavigne et al. Pediatr. 91:649-655, 1993.; Sturner. JDBP. 12:51-64, 1991.
Screen the overall development of all children with a parent questionnaire (at a subset of ages as part of well-child examinations or at each well-child exam, and whenever concerns are expressed).
Resource for Implementation: A Practical Guide for Improving Developmental Services (from the Commonwealth Fund) - Module 2: Developmental Screening and Surveillance
Parent-completed developmental screening tools - The American Academy of Neurology (AAN) and American Academy of Pediatrics (AAP) recommend the following :
- ASQ - Ages and Stages Questionnaire
- 30-item photocopiable questionnaires for use at 4, 6, 8, 10, 12, 14, 16, 18, 20, 22, 24, 27, 30, 33, 36, 42, 48, 54, and 60 months of age. Each questionnaire covers five key developmental areas: communication, gross motor, fine motor, problem solving, and personal-social.
- CDI - Child Development Inventories
- Two brief parent questionnaires - the Infant Development Inventory (First 18 months) and the Child Development Review (18 months to kindergarten)
- Child Development Inventory - 18 months to 6 years - 300 item inventory for assessment of children whose development is of concern
- PEDS - Parent's Evaluation of Developmental Status
- With ten short questions to parents, PEDS helps professionals identify children at risk for school problems and those with undetected developmental and behavioral disabilities.
* Practice Parameter: Screening and diagnosis of autism.
Screening Schedule Examples:
AAP - Every well child visit
North Carolina- 4, 6, 12, 24, 36, 48 months
Updated N. Car. Screening Schedule including Maternal Depression and other screening options: LINK
Nickel & Squires -
- High Risk - 4, 8, 12, 18, 24, 36, 48 months and whenever concern (Parent or Primary care provider) + language screen between 18-36 months
- Low Risk - 6, 12, 18, 24, 36, 48 months with same language screen and concern recommendation.
Accuracy of Parental Report Measures
Glascoe FP. Parents' concerns about children's development: prescreening technique or screening test? Pediatrics. 1997. 99(4):522-528.
- Parents are often INACCURATE on recall of milestones (e.g. When did your child first wave bye-bye?)
- Parents are ACCURATE on reporting of current skills
- Parental concerns are ACCURATE indicators for:
- Speech and language delays
- Fine motor delays
- General delay
- Parental concerns are LESS ACCURATE indicators in the areas of:
- Self-help skills
- Behavior
- Several of the parent report measures are available in multiple languages, such as Spanish, Korean, and French. (Further information at individual tool links above.)
- Parental report measures may be administered by interview format and with an interpreter for families where English language literacy is an issue.
Flow Sheet for Developmental Screening
[Courtesy of Nickel RE and Squires J. In The Physician’s Guide to Caring for Children with Disabilities and Chronic Conditions. Eds. Nickel RE, Desch LW. PH Brookes Publishing Co. (2000): p. 22.]
1. Talk with parents about results
2. Parents as Partners – Monitoring and Referral 3. If unsure, REFER!
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- Emphasize child’s current skills
- Emphasize family skills & resources
- Discuss current screening results
No Concerns
- Continue routine monitoring.
Minor Concerns
- Children’s developmental pattern may show bursts and plateaus
- Assess risk factors
- Development is influenced by health and environmental factors. For example, since implementing the back-to-sleep recommendations, infants may show immaturity of head control in prone position.
- Some risk factors put a child at higher risk, e.g. very-low-birth-weight infant or infant with microcephaly.
- Determine whether immediate referral for assessment is indicated or whether the child should continue to be monitored with another developmental screening in a month or two.
- Consider need for hearing or vision assessment.
- Schedule recheck appointment
– No pathology present but demonstrates immaturity in skill level or quality
More than Minor Concerns
- Indicate the need for further assessment (e.g. hearing or vision, as well as developmental assessment) and make arrangements.
- Concerns identified on screening are NOT confirmation of a problem but only an indicator of the need to look further.
- Hints on discussion concerning screening results:
- See ‘Sharing Sensitive News’ including resources at bottom of section
BACK TO "What To Do After The Screening"
Give Parents Activities, Monitoring Tools and Resources
Parents as Partners – Monitoring and Referrals
Give parents activities to enhance development, tools to continue to monitor developmental progress, and resources for child development information:
- www.childprofile.org
- www.talaris.org
- www.cdc.gov/ncbddd/actearly/
- www.firstsigns.org
- www.zerotothree.org
- www.pbs.org/wholechild/abc/index.html
- www.pbs.org/parents/childdevelopment/
- www.speechdelay.com/milestones (Speech and language activities)
- Play activities - www.zerotothree.org/site/PageServer?pagename=key_play
Consider referral to programs such as infant-toddler play groups, preschool programs, Early Head Start and Head Start programs, and parenting programs (Family Support Information).
Consider developmental stimulation activities and programs:
- "Reach Out and Read" - find Washington State Programs
- Literacy Programs for adults -
(Adult Literacy Program Information, Literacy Links Washington State,
King County Literacy Resources,
Basic Information on Literacy in Washington State)- Storytimes – library, local bookstores, other
- Information about books and early literacy for young children
BACK TO "What To Do After The Screening"
Confirm/rule out the presence of delays or atypical development
- Refer for further assessment
- In the state of Washington, either of the following people can link you to resources for further developmental assessment in your community.
- GO TO: www.medicalhome.org/resources/local_contacts.cfm
See sections listing:
CSHCN Coordinators (serving children 0-18 years of age)
Family Resource Coordinators (serving children 0-3 years of age).
- Families can the Washington State Family Health Hotline at 1-800 322-2588 or 1-800-833-6388 (tty relay) and be linked to resources for further assessment.
- Give parents information about the assessment process
If Child is Not Delayed/Not Eligible for Services :
- Recommend activities and resources to enhance development (see Parents as Partners section immediately above this section)
- Continue to monitor the child’s development closely.
1. Connect with interventions
- 0-3 Family Resources Coordinators (FRCs), Children with Special Health Care Needs (CSHCN) Coordinators from the local health department, Neurodevelopmental Centers and other county resources
www.medicalhome.org/resources/resource_info.cfm - Connect the family with the toll-free state maternal and child health hotline WithinReach 1-800 322-2588 or 1-800-833-6388 (tty relay).
- See also - 'The Medical Home and Early Intervention Programs' from the AAP
- Why?
- Estimation of recurrence risk,
- Prognosis,
- Medical follow-up for known complications,
- Specific therapeutic interventions - available in rare cases
- Resources:
- Information for families about medical subspecialties
- Physicians,
neurodevelopmental
centers and other resources - AAP listings
- List of Hospitals statewide
- Newborn Screening-Condition-specific Action Steps and Treatment Algorithms
- An ACTion (ACT) sheet describes the short term actions a health professional should follow in communicating with the family and determining the appropriate steps in the follow-up of the infant that has screened positive.
- An algorithm that presents an overview of the basic steps involved in determining the final diagnosis in the infant. The algorithms were developed by a work group that included experts in the various specialties and conditions involved in newborn screening for endocrine, hematological, genetic and metabolic diseases.
- All materials were approved by the Board of Directors of the American College of Medical Genetics (ACMG). The materials will be maintained by ACMG over time and additional materials added as new conditions are introduced into newborn screening programs
- Dysmorphic features list -
- See pages 18-20 at the following website: www.ohsu.edu/cdrc/medicalhome/docs/dd.pdf
- Dymorphology assessment of the newborn
www.netsvic.org.au/nets/handbook/
index.cfm?doc_id=885#Examination_Checklist
- See pages 18-20 at the following website: www.ohsu.edu/cdrc/medicalhome/docs/dd.pdf
- Additional Etiologic Work Up Information:
- Laboratory Testing: Array-based Comparative Genomic Hybridization (CGH) - general information for physicians
- Mitochondrial Disorders- (link)
- Laboratory Testing: Array-based Comparative Genomic Hybridization (CGH)
- References for Evaluation of Developmental Delay:
Practice Parameter: Evaluation of the Child with Global Developmental Delay. American Academy of Neurology. Shevell M et al. Neurology. 60:367-380, 2003. www.neurology.org/cgi/reprint/60/3/367.pdf
Mental Retardation: Diagnosis, Management, and Family Support. Plauche-Johnson C, Walker WO et al. Curr Probl Pediatr Adolesc Health Care. 36:126-165, April 2006. [Link]
Clinical Genetic Evaluation of the Child with Mental Retardation or Developmental Delays. Moeschler JB et al. (AAP Committee on Genetics) Pediatrics. 117:2304-2316, June 2006. [Link]
A Rational Approach to the Medical Evaluation of a Child with Developmental Delay. Roberts G, Palfrey J, Bridgemohan C. Contemporary Pediatrics. 21(3):76-99, March 2004. [Article Link]
Developmental Delay in Children Younger than 6 Years. Davis BE, Bennett FC. In Pediatric Decision Making, 4th Edition. Ed. Berman S., Mosby, Philadelphia, 2003.
Developmental Delay: When to suspect and how to investigate for an inborn error of metabolism. Cleary MA, Green A. Arch Dis Child. 90:1128-1132, 2005.
Diagnostic Evaluation of Developmental Delay/Mental Retardation. Battaglia A, Carey JC. Am J Med Genet. 117C:3-14, 2003. (See the “algorithm for ‘rational evaluation’ of a patient with MR/DD” in Figure 1).
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. www.ohsu.edu/cdrc/medicalhome/docs/dd.pdf
Identification and Evaluation of Mental Retardation. Daily DK, Ardinger HH, Holmes GE. American Fam Physician. 61(4):1059f. 2000.
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
3. Assist parents
Provide information and support for family and child with developmental delay.
- Key Contacts such as FRCs and CSHCN Coordinators www.medicalhome.org/resources/local_contacts.cfm
- Family Support www.medicalhome.org/resources/family.cfm
- Washington State Resources by County www.medicalhome.org/resources/resource_info.cfm
4. Coordinate care
Link children with special health care needs and their families to services and resources in a coordinated effort to maximize the potential of the children and provide them with optimal health care (AAP, Committee on Children With Disabilities, 1999).
www.medicalhomeportal.org/clinical-practice/building-a-medical-home/care-coordination
Early Intervention WORKS!
Early Intervention promotes children’s growth and development. It encourages positive parent-child relationships. And Early Intervention increases a family’s capacity to care for their child and reduces the need for out-of-home placements. |
- Windows for learning begin at birth
- There are greater developmental gains with less chance of secondary problems when early intervention begins soon after diagnosis
- Early intervention reduces the need for special education and other
services later in life
- In Washington State over 8,900 children received birth-to-three early intervention services from October 1, 2007– September 30, 2008. In the same period, 4,097 children transitioned out of early intervention services. Of these 4,097 children, 1,094 or 27.0% no longer needed special education services.
- Early intervention reduces additional stressors on families
- Early intervention is cost-effective.
For more information on early intervention programs see:
- The Medical Home and Early Intervention Programs - from the AAP www.medicalhomeinfo.org/health/Downloads/EIBrochureF.pdf
- Idea Part C Early Intervention: Twenty Years of Making a Difference for Young Children and Their Families - LINK
Early Intervention for Children with Disabilities Works, Report Finds
Findings among many included in annual report to Congress on special education
Press release September 10, 2003
www.ed.gov/news/pressreleases/2003/09/09102003.htmlChildren with disabilities who receive early intervention services show significant developmental progress a year later, and families report increased confidence in their ability to deal with their child, according to the Department of Education's 24th annual report to Congress on the condition of special education.
The report, "To Assure the Free Appropriate Public Education of All Children with Disabilities," cites several sources, including the department's ongoing National Early Intervention Longitudinal Study (NEILS). NEILS tracks 3,338 infants and toddlers with disabilities who received early intervention services.
A year into the services, "significantly high" percentages of the children had reached milestones in areas of motor skills, self-help, communication and cognition, the report found.
Part C of the Individuals with Disabilities Education Act (IDEA) requires states to provide early intervention services to children with disabilities from birth through age two. Early intervention can include speech and hearing services, family training and counseling, home visits, diagnostic medical services, occupational or physical therapy, social and psychological services and service coordination. More than 268,000 children receive early intervention services.
"This is yet another confirmation that the earlier we identify children with disabilities and provide highly effective evidence-based interventions, the better chance they have of reaching their full potential," said Robert Pasternack, assistant secretary for special education and rehabilitative services.
Page History:
Originally posted June 2005.
Updated June 28, 2006.
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