Three different 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 check on the development of their patients but they do this somewhat differently from physician to physician.
One physician uses a tool called the Modified Checklist for Autism in Toddlers (M-CHAT) for all 18 month olds in her clinic. One physician uses a parent developmental screening 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 “fails” the M-CHAT, is referred to an early intervention program and is diagnosed with autism and receives intensive services. 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 relate to 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, socially and motorically. Unfortunately, there are a variety of medical conditions that cause derangements in proper child development. These include common conditions such as mild intellectual disability, learning disabilities, and language disorders. There are many problems that are rarer such as the developmental disabilities that have a particular genetic etiology, although these are not so rare if taken as a group. Other medical conditions, such as cancer, may impact child development because of the condition itself, effects of treatment on the brain, and because of child and parental stress from the condition. There are also situations that place a child at risk for developmental issues, such as prematurity, child abuse, and poverty.
Twelve to sixteen percent of children in the United States will have at least one area of developmental delay (1,2). For certain groups, such as children born premature or from low socioeconomic status, early intervention has been shown to result in higher academic achievement (1,3). Early intervention is also thought to improve outcomes for children with learning, language and mild intellectual disabilities (1). Children with more severe cognitive impairments and those with physical disabilities show improvements in social, communicative and other adaptive functioning with early intervention (3). It is therefore particularly important for physicians to carefully and routinely evaluate children for problems in development so that referral to early intervention services, when appropriate, is made.
Physicians such as pediatricians and family physicians 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 may be 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 evaluation of a child's development, but the best time to do developmental screening is in a primary care context (3). In the emergency room or in the hospital, a child may show developmental regression because of the reason for the ER visit/hospitalization. Directly observed developmental skills may be different compared to when the child is well. Also, 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, and the primary care environment allows such relationships, with ongoing discussions with families and thus opportunities for identifying children with developmental issues (3).
Identifying children with cognitive, social or motor problems can be difficult. 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. 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. There is large variation on when milestones are achieved in early childhood (3).
Because a percentage of children have developmental problems, a physician requires solid strategies for determining if a child has an important lag or problem in development. Surveillance combined with screening tools at regular intervals is recommended to find children who should be identified. According to the American Academy of Pediatrics, developmental surveillance is defined as a “flexible, longitudinal, continuous, cumulative process” with the following components (5): 1. Eliciting and attending to the parents’ concerns about their child’s development. 2. Documenting and maintaining the child's developmental history. 3. Making accurate and informed observations of the child's development. 4. Identifying the presence of risk and protective factors for developmental delay. 5. Documenting the process of ongoing developmental surveillance and screening activities.
The AAP has an algorithm that uses surveillance as a routine at every well child visit – if concerns are found, then a screening tool is recommended. Also, it is recommended that developmental screening be automatically done at ages where critical developmental problems can be identified more reliably. These are at the 9 month, 18 month, and 30 month visits (4). An autism specific screening tool is recommended at 18 months and 24 months of age (2). Several tools are available for this use (4).
A developmental screening tool is a method that needs to be done in a prescribed way, and that has sensitivity and specificity for identifying children with delay or derangement in development. 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. Physicians have been shown to be poor at identifying children with developmental delays without the use of screening tools (2). Using only surveillance methods such as checklists and clinical observation that have poor sensitivity will miss many, possibly up to 45% of children with delays (1).
There are two main types of screening – standardized parent questionnaires, and directly administered tools looking to see what a child is able to do, in conjunction with parent report (1). Directly administered screening tools will usually take more time and effort.
Parental questionnaires can be done very efficiently by having a parent fill these out prior to the clinic visit, or while in the waiting room. These can be easy to administer and score, and inexpensive. Although a clinician might wonder how sensitive or specific these are, most parents are actually good observers of their children and have the benefit of seeing what a child is able to do over a longer period of time compared to the clinician. Also, parents are directly engaged in the process of screening when they fill out a questionnaire (1). Two tools that capitalize on these advantages are the Ages and Stages Questionnaire (ASQ) and the Parents’ Evaluation of Developmental Status (PEDS). There has been ongoing research comparing these two popular screening tools (3). There are also many other tools for the clinician to consider (1, 4, 5).
The AAP algorithm guides what to do with the results of screening that is positive. Positive screens lead to 1) referral for more definitive evaluation and assessment of etiology, and 2) referral to early intervention systems and preschool programs for children younger than the age of five years (4).
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 assessments administered by the school on a periodic basis. These can be curriculum based (a teacher knows the grade level of the books a child can read at) or criterion based (tests based on data of a population which is used to establish norms).
The role of the physician in developmental screening is therefore especially important prior to the school years. Physicians should access early intervention services and then special education programs for their children with developmental concerns less than 5 years of age.
1. Developmental delay occurs 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/office
. . . . 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.
. . . . 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 choices) 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. Mackrides PS, Ryherd SJ. Screening for developmental delay. Am Fam Physician 2011;84(5):544-549.
2. Guevara JP, Gerdes M, Localio R, et al. Effectiveness of Developmental Screening in an Urban Setting. Pediatrics 2013;131;30
3. Limbos MM, Joyce DP. Comparison of the ASQ and PEDS in Screening for Developmental Delay in Children Presenting for Primary Care. J Dev Behav Pediatr 2011:2:499–511.
4. American Academy of Pediatrics - Council on Children With Disabilities, Section on Developmental Behavioral Pediatrics, Bright Futures Steering Committee and Medical Home Initiatives for Children With Special Needs Project Advisory Committee. Identifying Infants and Young Children With Developmental Disorders in the Medical Home: An Algorithm for Developmental Surveillance and Screening. Pediatrics 2006;118;405.
5. Drotar, D, Stancin T, Dworkin P. Pediatric Developmental Screening: Understanding and Selecting Screening Instruments. Training modules - February 26, 2008.
Answers to questions
1.c, 2.a, 3.c, 4.e, 5.d, 6.b