Three 18 month old children with their respective families have been seen at the outpatient pediatrics clinic since birth. All three children superficially appear normal, growing well on their growth curves. The children have no dysmorphic features or other abnormal signs on physical exam. They have not had any serious illness or hospitalization. The physicians in the clinic are mandated to do a check of development but they do this somewhat differently from physician to physician. One physician uses a Denver II Developmental screen on selected visits. One physician uses a Parent Questionnaire (a particular one called the PEDS) routinely. Another physician asks questions to her parents but does not use any formal developmental screening instrument.
In actuality all three children have autism. All three families do not know their children have this.
The first child shows delays on the Denver II screen in the personal social area. With the Denver II, the parents are asked certain questions, and they relate he doesn't play pat-a-cake, indicate wants, wave bye-bye, imitate activities or help in the house at 18 months of age. On direct observation with the Denver II he doesn't play ball with the examiner. Also he is not saying any words including "mama" or "dada" at 18 months of age. In the gross and fine motor areas his development appears normal. He is referred to an early intervention program and is diagnosed with autism.
The mother of the second child answers "Yes" to three of the questions on the PEDS (Parents' Evaluation of Developmental Status) parent questionnaire: 1) Do you have any concerns about how your child understands what you say?, 2) Do you have any concerns about how your child behaves? and 3) Do you have any concerns about how your child gets along with others?. The mother answers "no" to the other questions on the questionnaire. On further questioning the child's family relates how she likes to play by herself, and is easy to care for as she doesn't need too much attention. They are worried that she doesn't talk as much as other children, with words being spoken but in ways that do not make sense. She is suspected to have autism, and is referred to a Developmental Behavioral Pediatrician who confirms the diagnosis after more elaborate evaluation. She is referred to an early intervention program.
The physician who asks questions directly to families, finds the parents of the third child slightly worried at the 18 month visit about the child not being cuddly and not seemingly not very attached to them. They are told to interact more at home with their toddler. Later at three years of age, the parents are very worried about the child's language but are told that many children are "late talkers". When the child is five years of age the school notes the child's aloofness, poor receptive and expressive language, and nonexistent social skills. The school psychologist evaluates the child and relates to the parents their child has autism. The parents become angry as they find that many characteristics they have seen in the past two to three years are noted by the school psychologist as signs of autism. They tell the psychologist that they feel that their physician should have figured this out earlier.
An important aspect of caring for children in a medical context is that they grow in multiple ways over time. There is an expectation that they will grow physically in size. They also develop cognitively, behaviorally, socially and motorically.
Unfortunately, there are a variety of medical conditions that are derangements in proper child development. These include common diagnoses such as mental retardation and language disorders. There are many more problems that are rare, such as most of the developmental disabilities with genetic etiologies. Other medical conditions, such as cancer, may impact child development because of the effects of chemotherapy on the brain, or because of child and parental stress. Developmental or behavioral conditions are thought to occur in 12 to 16% of children in the United States (1). Families expect physicians to identify developmental problems in their children and then help manage these concerns (2).
It is therefore particularly important for physicians to carefully and routinely evaluate children for problems in development and behavior. Physicians such as pediatricians and family practitioners have essential roles because of their frequent contact with children and their families. They have knowledge of normal and abnormal development unlike other professionals who are in touch with families.
Physicians commonly encounter children in well child visits, in the emergency room, and in the hospital. All of these contexts allow for some monitoring of a child's development, but the best time to do developmental screening is in a primary care context. In the emergency room or in the hospital, a child may show developmental regression. Directly observed developmental behavior may be different than when the child is well (3). Attention is focused on acute illness during ER and hospital conditions, which makes families less receptive to other aspects of child health and development. Families also have more trust with someone who gets to know their child and family well. They prefer hearing any bad news from their regularly seen provider (4).
Identifying children with cognitive, behavioral, social or motor problems can be difficult. Problems in development may be subtle. Glancing at a child in the clinic may not identify these problems. Obvious and severe problems are actually rare compared to more commonly seen but subtle problems. Also, children sometimes do not cooperate with assessments. Lastly, developmental expectations change with age. Risk factors change with time. A child that appears completely normal as an infant or toddler may not develop skills expected in the preschool or school age group periods.
But because a moderate percentage of children have developmental or behavioral problems, a physician requires solid strategies for determining if a child has an important lag or problem in development. The majority of children with developmental problems are not detected without standardized screening tests. Informal "eyeballing" of children and informal questioning of parents do not work well. There is a good chance of missing problems because of the need of looking at multiple domains in development. A physician asking about walking and other motor skills may miss language and other cognitive deficits. Research from Great Britain where clinical impression is used rather than screening tests is revealing. It has been found that only about half the children who need to be identified are found using physician clinical impression without a developmental screening instrument (5). Also, asking questions about developmental milestones without a screening tool finds less than 30% of children with developmental conditions (6).
Therefore several instruments have been developed to increase identifying children with problems. These tools should be used on whole populations of children as to not miss children with subtle (and sometimes not so subtle) problems. Children need to be identified early so that problems can be managed properly. Goals of early management include optimizing the child's development, and supporting families with these children well.
The Denver II is a very popular screening tool used in the United States and worldwide. It was developed by Dr. William Frankenburg at the University of Colorado Health Sciences Center in Denver. It is an example of a "hands on" screening tool that also allows for parental report for selected items. However, most of the items require direct observation of the child trying to do certain tasks. There are 125 tasks arranged in four domains: personal-social, fine motor-adaptive, language and gross motor. However, only a few items in each domain are required to screen a particular child at a selected age. It has several advantages including ease of administration, coverage of a good range of age groups to screen (from birth to about 6 years of age), and a normative sample that includes diversification of race, place of residence (urban, suburban, rural) and the mother's educational level (7). There are also very few screening tests that take less time (although clinicians still balk at the 20 minute administration time).
One type of screening that is growing in popularity, and bolstered by recent research findings is a standardized parent questionnaire. Parents' concerns about children are important. Some concerns, particularly with parental worries regarding speech-language, emotional, behavioral, fine motor and global problems were highly predictive of true problems (5). Concerns about the accuracy and bias of parent reporting, parent reading level, and their understanding of concepts regarding the standardized parent screening tools have not been shown to be major problems after research has been done regarding these tools. (6).
The PEDS (Parents' Evaluation of Developmental Status) is a recently developed and well researched example of a standardized parental questionnaire. Parents complete the 10 item questionnaire in the waiting room. It takes about two minutes for the clinician to interpret the questionnaire. The PEDS can guide the clinician in getting particular history from the parents and guide what elements to include on the exam. The interpretation also helps guide the clinician in whether to use a hands-on screening tool, give parental reassurance, monitor the child, or make specific referrals to other specialists (6).
There are common problems in using developmental screening tests. A very common problem is not administering the screen as it was intended. This is often done secondary to poor training in the screening tool or to save time. The Denver II takes about 20 minutes to administer and score (8). Parental questionnaires are often quicker as they can be given to the parents while they are in the waiting room, and then scored when they interact with the physician (7).
Another problem is to assume that the screening test done at one point in time will discover all children with every type of developmental problem (8). Because development is ongoing with time, and because measuring development at very young ages cannot evaluate the full complexity of the various developmental domains at later ages, it is important to continue to assess children using tools appropriate for their age throughout their entire development.
Fortunately the child attending school usually has such assessments administered by the school on a periodic basis. The job of the physician in developmental screening is especially important prior to the school years. Physicians can access early intervention services until 3 years of age and then special education programs from ages 3 to 5 years for their children with developmental concerns.
1. Developmental and behavioral conditions occur in approximately what percentage of children?
. . . . a. 0.15%
. . . . b. 1.5%
. . . . c. 15%
. . . . d. 50%
. . . . e. 80%
2. What is the best clinical situation to try to identify children with developmental disorders from developmentally normal children?
. . . . a. Primary care clinic
. . . . b. Emergency room
. . . . c. Hospital ward
. . . . d. Pediatric intensive care unit
. . . . e. All of the above are "best places"
3. Which of these following methods of identifying children with developmental or behavioral concerns has the worst sensitivity?
. . . . a. "Hands on" developmental screening tool (such as the Denver II).
. . . . b. Parent answered developmental questionnaire.
. . . . c. Physician clinical impression about development, without a screening tool.
. . . . d. Flagging all children in the Neonatal Intensive Care Unit (NICU) that have risk factors for disability.
. . . . e. All have about equal sensitivity.
4. Which of the following have been proven problems regarding the standardized parent developmental screening tools?
. . . . a. Concerns about the accuracy of parent reporting.
. . . . b. Concerns about the bias of parent reporting.
. . . . c. The tools are time consuming for the clinician to use.
. . . . d. Understanding of concepts by parents.
. . . . e. All of the above are not problems according to research.
5. Common problems in using developmental screening tests include all of the following EXCEPT:
. . . . a. Not administering the screen as it was intended.
. . . . b. An assumption that the screening test done at one point in time will discover all children with every type of developmental problem.
. . . . c. Screening tests can be time consuming for the clinician.
. . . . d. Children are not amenable to screening between birth and three years of age.
. . . . e. Training is necessary for the proper use of these tools.
6. When is the best age (out of the following suggestions) for a physician to administer a developmental screening tool?
. . . . a. In utero
. . . . b. 2 years
. . . . c. 6 years
. . . . d. 10 years
. . . . e. 17 years
1. Committee on Children with Disabilities, American Academy of Pediatrics. Developmental surveillance and screening of infants and young children. Pediatrics 2001;108(1):192-196.
2. Okamoto J, Ratliffe KT, Ah Sam A. Childhood disabilities in medical education at the John A. Burns School of Medicine (JABSOM). Hawaii Medical Journal 2001;60:5,20.
3. Stein MT. Chapter 24 - Encounters with Illness: Opportunities for Health promotion. In: Dixon SD and Stein MT (eds). Encounters with Children: Pediatric Behavior and Development, third Edition. 2000, St. Louis: Mosby, pp. 541.
4. Krahn G, Hallum A, C Kime. Are there good ways to give "bad news"? Pediatrics 1993;91(3):578-582.
5. Glascoe FP, Dworkin PH. Obstacles to effective developmental surveillance: Errors in clinical reasoning. Dev Behav Pediatr 1993;14(5): 344-349.
6. Kilgore C. Child development: parents know best. Pediatr News 1999;33(8):1,5.
7. Kenny TJ, Culbertson JL. Chapter 5 - Developmental Screening for Preschoolers. In: Culbertson JL, Willis DJ (eds). Testing Young Children: A Reference Guide for developmental, Psychoeducational, and Psychosocial Assessments. 1993, Austin: Pro-Ed, pp. 73-100.
8. Frankenburg WK, Chen J, Thornton SM. Common pitfalls in the evaluation of developmental screening tests. J Pediatr 1988; 13(6):1110-1113.
Answers to questions
1.c, 2.a, 3.c, 4.e, 5.d, 6.b