Developmental-Behavioral Screening and Surveillance

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Chapter 14 Developmental-Behavioral Screening and Surveillance

Developmental-behavioral problems are the most common conditions of childhood and adolescence. When combined with school failure and high school drop-out rates, prevalence reaches 1 in 4 to 1 in 5 children. In inner-city low-income settings, drop-out rates often reach as high as 50%. If intervention is instituted prior to school entrance, many problems can be prevented, and all can be ameliorated. The Individuals with Disabilities Education Act (IDEA) coupled with the Head Start Act ensure a free national system to locate and treat young children deemed at risk for developmental-behavioral problems or who have established delays. Early intervention depends on early detection performed by primary care providers.

Many young children at risk for school failure lack measurable delays but have markers in the form of multiple psychosocial risk factors that are strong predictors of future problems. Measurable delays are common in children with a history of abuse or neglect. High-risk psychosocial factors are frequently found in foster children and warrant an automatic referral (no screen required) to an IDEA program. Other psychosocial risks include parents with less than a high school education, parental mental health problems (depression or anxiety), housing and food instability, ethnic or linguistic minority, ≥3 children in the home, or an authoritarian parenting style (e.g., highly directive, rarely engaging verbally in children’s unique interests, punitive). Such risks, with or without apparent delays, often result in children being held back in grade, dropping out of high school, teen pregnancy, unemployment, drug abuse, or criminality. Early intervention reverses this cycle. Access to programs such as Head Start/Early Head Start for most children with psychosocial risk factors is based on federal poverty guidelines. Families often need parent training mental health referrals, housing, and social work services. Older children with risk factors, benefit from drop-out prevention assistance, including after-school tutoring, Boys and Girls Club, summer academic programs, and mentoring.

Of children with measurable delays or disabilities, the most common (and least well-identified) condition is speech-language impairment (17.5% at 30-36 mo) (Chapter 32), Other common conditions are social-emotional disorders (9.5-14.2%), attention-deficit/hyperactivity disorder (7.8%) (Chapter 30), learning disabilities (6.5%), intellectual disabilities (1.2%) (Chapter 33), and autism spectrum disorders (0.6-1.1%) (Chapter 28). Less common conditions include cerebral palsy (physical impairments) (0.23%) (Chapter 591.1), hearing impairment (0.12%), vision impairment (0.8%) (Chapter 613), and other forms of health or physical impairments (e.g., Down syndrome, fragile X syndrome, traumatic brain injury). Early detection of emerging deficits among very young children typically requires clinicians to screen with tools proven to be accurate.

Despite the serious long-term consequences of delays and disabilities, at young ages, children’s problems are often so subtle that clinical judgment is ineffective. In addition, many children with developmental deficits present with behavior problems first. In all cases and at all well visits, screening with accurate tools is the only way to identify problems, discern developmental from behavioral/mental health issues, and thus make wise decisions about needed referrals.

Very young children with delays, (i.e., birth to 3 yr of age) do not require a specific diagnosis to receive IDEA services. They are eligible under developmental delay, defined as a 25% departure from typical performance in ≥2 developmental domains (e.g., receptive language, expressive language, fine motor, gross motor, social-emotional, cognitive/pre-academic, and behavior). Primary care providers need not make a diagnosis in very young children but instead should focus on detection and referral to IDEA programs. Nevertheless, clinicians can simultaneously refer to subspecialty services, particularly when autism spectrum disorder is suspected. Children over the age of 3 yr are served and tested by the public schools psychologists, and speech-language pathologists will define disabilities more discretely.

Early Detection in Primary Care

Only about 25% of children with developmental delays are detected prior to school entrance, meaning that most children with problems will have missed opportunities for early intervention. Although clinicians are effective at detecting severe disabilities associated with congenital, metabolic, or genetic abnormalities, providers are far less adept at discerning the more common conditions because these typically lack overt dysmorphology.

Reasons for underdetection in primary care include (1) dependence on nonstandard administration of standardized screens (including selected items from longer measures) and informal milestones checklists; both approaches lack proof of validity and criteria for making accurate decisions; (2) failure to continually check on developmental progress; (3) clinical judgment (because it tends to depend heavily on dysmorphology and organicity, which are not present in the majority of children with disabilities); (4) requirement of repeated screening test failure before making a referral (due to lack of awareness that quality screening measures are highly reliable and that a repeated screen is likely to yield identical results); (5) false optimism about outcome (children rarely outgrow developmental problems in the absence of intervention); (6) discomfort at delivering difficult news; (7) lack of familiarity with tools effective for busy primary care settings; and (8) problematic reimbursement for screening services (generally due to insurance non-reimbursement policies or ineffective use of procedure codes).

To improve better detection in primary care, the American Academy of Pediatrics recommends developmental screening and surveillance at well visits. Developmental screening refers to the administration of brief, standardized, and validated instruments that have been researched for their sensitivity in detecting children with probable problems and specificity in determining when children probably do not have problems. Standards for screening test accuracy are 70-80% sensitivity and specificity. Although these figures are low compared to standards for most medical screens, developmental problems develop over time. Repeated screening is expected to compensate for underdetection of what is essentially a “moving target.” Over-referrals are less concerning because research shows that most children with false-positive screens, while ineligible for special education services, are nevertheless in need of remedial programs (e.g., Head Start, after-school tutoring, summer school, and quality preschool or day care), due to psychosocial risk factors, including poverty and limited maternal education and below-average performance in the better predictors of school success (i.e., language, intelligence, and academic/pre-academic skills).

In addition to repeated developmental screening, physicians are also encouraged to practice developmental surveillance at each well visit. Developmental surveillance provides a context for screening results and involves scrutinizing family functioning and risk factors, observing longitudinally child behavior and developmental skills, eliciting and attending to parents’ concerns, and deploying knowledge of children’s medical history. Information obtained through surveillance should never be used to override a positive screening test result, but it can be used to elevate suspicions about negative screening results. Surveillance is essential for determining service needs and for selecting optimal methods to help parents promote positive development through written materials, hands-on parent training, and/or social work services.

Screening and surveillance must use quality measures to ensure accurate detection. Fortunately, many tools serve both functions. Table 14-1 shows a range of screens useful for early detection of developmental and behavioral problems including autism spectrum disorders. Because well visits are brief and have enormous agendas (physical exams, immunizations, anticipatory guidance, safety and injury prevention counseling, and developmental promotion), tools relying on information from parents are ideal because they can be completed in advance of appointments, online, or in waiting or exam rooms.

Table 14-1 TOOLS FOR DEVELOPMENTAL-BEHAVIORAL SCREENING AND SURVEILLANCE

Table 14-2 provides a step-by-step process of evidence-based screening and surveillance. The sequence is based on the American Academy of Pediatrics 2006 policy statement (with enhancements added to the referral and follow-up process).

Table 14-2 COMBINING SCREENING AND SURVEILLANCE: A PRACTICE ALGORITHM

1. ENSURE A MEDICAL HOME.

Timely, equitable access to care logically correlates to well child care compliance rates and therefore, developmental delay identification rates. Children with developmental and behavioral problems or special health care needs use health care services at >2× the rate of other patients. Visits are often complex due to the need to make referrals, locate information from prior visits and services, make follow-up appointments, and coordi nate with other providers. The AAP’s medical home model (www.medicalhomeinfo.org) is an essential guide to organizing practices to ensure continuity and coordination of care and to best meet the needs of children with disabilities and their families.

2. REVIEW MEDICAL CHART FOR HEALTH RISK FACTORS.

Consider potentially harmful exposures including radiation or medications, infectious illnesses, fever, addictive substances, trauma, and results of neonatal screens, including phenylketonuria, congenital hypothyroidism, and numerous other metabolic conditions. The perinatal history includes birthweight, gestational age, Apgar scores, and any medical complications (Chapter 88.1). Postnatal medical factors that are sometimes overlooked include failure to thrive, abnormal growth curves for head circumference, neurological (e.g., seizure) disorders, endocrine disorders, amblyopia or other significant forms of visual impairment, chronic respiratory or allergic illness, conductive or sensorineural hearing impairment, congenital heart disease, iron deficiency anemia, head trauma, and sleep disorders (particularly obstructive sleep apnea [Chapter 17

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