John C. Duby

Identifying infants and young children with developmental disorders in the medical home: An algorithm for developmental surveillance and screening

Early identification of developmental disorders is critical to the well-being of children and their families. It is an integral function of the primary care medical home and an appropriate responsibility of all pediatric health care professionals. This statement provides an algorithm as a strategy to support health care professionals in developing a pattern and practice for addressing developmental concerns in children from birth through 3 years of age. The authors recommend that developmental surveillance be incorporated at every well-child preventive care visit. Any concerns raised during surveillance should be promptly addressed with standardized developmental screening tests. In addition, screening tests should be administered regularly at the 9-, 18-, and 30-month visits. (Because the 30-month visit is not yet a part of the preventive care system and is often not reimbursable by third-party payers at this time, developmental screening can be performed at 24 months of age. In addition, because the frequency of regular pediatric visits decreases after 24 months of age, a pediatrician who expects that his or her patients will have difficulty attending a 30-month visit should conduct screening during the 24-month visit.) The early identification of developmental problems should lead to further developmental and medical evaluation, diagnosis, and treatment, including early developmental intervention. Children diagnosed with developmental disorders should be identified as children with special health care needs, and chronic-condition management should be initiated. Identification of a developmental disorder and its underlying etiology may also drive a range of treatment planning, from medical treatment of the child to family planning for his or her parents.

Care coordination in the medical home: Integrating health and related systems of care for children with special health care needs

Care coordination is a process that facilitates the linkage of children and their families with appropriate services and resources in a coordinated effort to achieve good health. Care coordination for children with special health care needs often is complicated because there is no single point of entry into the multiple systems of care, and complex criteria frequently determine the availability of funding and services among public and private payers. Economic and sociocultural barriers to coordination of care exist and affect families and health care professionals. In their important role of providing a medical home for all children, primary care physicians have a vital role in the process of care coordination, in concert with the family.

Promoting Optimal Development: Screening for Behavioral and Emotional Problems

By current estimates, at any given time, approximately 11% to 20% of children in the United States have a behavioral or emotional disorder, as defined in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. Between 37% and 39% of children will have a behavioral or emotional disorder diagnosed by 16 years of age, regardless of geographic location in the United States. Behavioral and emotional problems and concerns in children and adolescents are not being reliably identified or treated in the US health system. This clinical report focuses on the need to increase behavioral screening and offers potential changes in practice and the health system, as well as the research needed to accomplish this. This report also (1) reviews the prevalence of behavioral and emotional disorders, (2) describes factors affecting the emergence of behavioral and emotional problems, (3) articulates the current state of detection of these problems in pediatric primary care, (4) describes barriers to screening and means to overcome those barriers, and (5) discusses potential changes at a practice and systems level that are needed to facilitate successful behavioral and emotional screening. Highlighted and discussed are the many factors at the level of the pediatric practice, health system, and society contributing to these behavioral and emotional problems.

Joint statement - Learning disabilities, dyslexia, and vision

Learning disabilities, including reading disabilities, are commonly diagnosed in children. Their etiologies are multifactorial, reflecting genetic influences and dysfunction of brain systems. Learning disabilities are complex problems that require complex solutions. Early recognition and referral to qualified educational professionals for evidence-based evaluations and treatments seem necessary to achieve the best possible outcome. Most experts believe that dyslexia is a language-based disorder. Vision problems can interfere with the process of learning; however, vision problems are not the cause of primary dyslexia or learning disabilities. Scientific evidence does not support the efficacy of eye exercises, behavioral vision therapy, or special tinted filters or lenses for improving the long-term educational performance in these complex pediatric neurocognitive conditions. Diagnostic and treatment approaches that lack scientific evidence of efficacy, including eye exercises, behavioral vision therapy, or special tinted filters or lenses, are not endorsed and should not be recommended.

Role of the medical home in family-centered early intervention services.

There is growing evidence that early intervention services have a positive influence on the developmental outcome of children with established disabilities as well as those who are considered to be “at risk” of disabilities. Various federal and state laws now mandate the establishment of community-based, coordinated, multidisciplinary, family-centered programs that are accessible to children and families. The medical home, in close collaboration with the family and the early intervention team, can play a critical role in ensuring that at-risk children receive appropriate clinical and developmental early intervention services. The purpose of this statement is to assist the pediatric health care professional in assuming a proactive role with the interdisciplinary team that provides early intervention services.

Pediatrics in the year 2020 and beyond: Preparing for plausible futures

Although the future of pediatrics is uncertain, the organizations that lead pediatrics, and the professionals who practice within it, have embraced the notion that the pediatric community must anticipate and lead change to ultimately improve the health of children and adolescents. In an attempt to proactively prepare for a variety of conceivable futures, the board of directors of the American Academy of Pediatrics established the Vision of Pediatrics 2020 Task Force in 2008. This group was charged to think broadly about the future of pediatrics, to gather input on key trends that are influencing the future, to create likely scenarios of the future, and to recommend strategies to best prepare pediatric clinicians and pediatric organizations for a range of potential futures. The work of this task force led to the development of 8 “megatrends” that were identified as highly likely to have a profound influence on the future of pediatrics. A separate list of “wild-card” scenarios was created of trends with the potential to have a substantial influence but are less likely to occur. The process of scenario-planning was used to consider the effects of the 8 megatrends on pediatrics in the year 2020 and beyond. Consideration of these possible scenarios affords the opportunity to determine potential future pediatric needs, to identify potential solutions to address those needs, and, ultimately, to proactively prepare the profession to thrive if these or other future scenarios become realities.

Partial deletion of ANKRD11 results in the KBG phenotype distinct from the 16q24.3 microdeletion syndrome

KBG syndrome (OMIM 148050) is a very rare genetic disorder characterized by macrodontia, distinctive craniofacial abnormalities, short stature, intellectual disability, skeletal, and neurologic involvement. Approximately 60 patients have been reported since it was first described in 1975. Recently mutations in ANKRD11 have been documented in patients with KBG syndrome, and it has been proposed that haploinsufficiency of ANKRD11 is the cause of this syndrome. In addition, copy number variation in the 16q24.3 region that includes ANKRD11 results in a variable phenotype that overlaps with KBG syndrome and also includes autism spectrum disorders and other dysmorphic facial features. In this report we present a 2½‐year‐old African American male with features highly suggestive of KBG syndrome. Genomic microarray identified an intragenic 154 kb deletion at 16q24.3 within ANKRD11. This childs mother was mosaic for the same deletion (present in approximately 38% of cells) and exhibited a milder phenotype including macrodontia, short stature and brachydactyly. This family provides additional evidence that ANKRD11 causes KBG syndrome, and the mild phenotype in the mosaic form suggests that KBG phenotypes might be dose dependent, differentiating it from the more variable 16q24.3 microdeletion syndrome. This family has additional features that might expand the phenotype of KBG syndrome.

Policy statement - Supplemental security income (SSI) for children and youth with disabilities

The Supplemental Security Income (SSI) program remains an important source of financial support for low-income families of children with special health care needs and disabling conditions. In most states, SSI eligibility also qualifies children for the state Medicaid program, providing access to health care services. The Social Security Administration (SSA), which administers the SSI program, considers a child disabled under SSI if there is a medically determinable physical or mental impairment or combination of impairments that results in marked and severe functional limitations. The impairment(s) must be expected to result in death or have lasted or be expected to last for a continuous period of at least 12 months. The income and assets of families of children with disabilities are also considered when determining financial eligibility. When an individual with a disability becomes an adult at 18 years of age, the SSA considers only the individuals income and assets. The SSA considers an adult to be disabled if there is a medically determinable impairment (or combination of impairments) that prevents substantial gainful activity for at least 12 continuous months. SSI benefits are important for youth with chronic conditions who are transitioning to adulthood. The purpose of this statement is to provide updated information about the SSI medical and financial eligibility criteria and the disability-determination process. This statement also discusses how pediatricians can help children and youth when they apply for SSI benefits.

Peering Into the Future: Pediatrics in a Changing World

Over the last decade, health care has experienced continuous, capricious, and ever-accelerating change. In response, the American Academy of Pediatrics convened the Vision of Pediatrics (VOP) 2020 Task Force in 2008. This task force was charged with identifying forces that affect child and adolescent health and the implications for the field of pediatrics. It determined that shifts in demographics, socioeconomics, health status, health care delivery, and scientific advances mandate creative responses to these current trends. Eight megatrends were identified as foci for the profession to address over the coming decade. Given the unpredictable speed and direction of change, the VOP 2020 Task Force concluded that our profession needs to adopt an ongoing process to prepare for and lead change. The task force proposed that pediatric clinicians, practices, organizations, and interest groups embark on a continual process of preparing, envisioning, engaging, and reshaping (PEER) change. This PEER cycle involves (1) preparing our capacity to actively participate in change efforts, (2) envisioning possible futures and potential strategies through ongoing conversations, (3) engaging change strategies to lead any prioritized changes, and (4) reshaping our futures on the basis of results of any change strategies and novel trends in the field. By illustrating this process as a cycle of inquiry and action, we deliberately capture the continuous aspects of successful change processes that attempt to peer into a multiplicity of futures to anticipate and lead change.

Perception of primary care pediatricians of effectiveness, acceptability, and availability of mental health services

Approximately 20% of children in the United States meet the criteria for a psychosocial disorder; however, less than 25% of these children receive psychosocial services. A questionnaire assessed primary care pediatricians’ (PCPs) perceptions of effectiveness, availability, and burden of treatment options for children’s psychosocial difficulties and parents’ acceptance and adherence with these treatments. Repeated measures analysis of variance found that PCPs are more likely to refer children with psychosocial problems to a mental health professional than to prescribe medication. PCPs prescribe medications more than counseling parents themselves or watchful waiting. PCPs reported children’s behavior is more likely to improve with mental health services than with medication, though medication is the most available treatment. PCPs believe parent training programs are very effective for treating children’s behavior problems, but believe parents are more accepting and compliant with other treatments. Findings indicate PCPs’ perceptions of availability and acceptability of treatment options drive their treatment recommendations of psychosocial problems.