AAP Recommends Broader Care for Kids With Special Needs

Diana Phillips

December 21, 2018

When caring for children with special needs, physicians and clinical teams should adopt a holistic view of the problems these patients and their families face, including psychosocial considerations that can influence their health and development, according to the American Academy of Pediatrics (AAP).

In new guidance published online December 17 and in the January issue of Pediatrics, the AAP urges physicians to regularly assess the social-emotional status of children with developmental disabilities and other conditions. The organization notes that factors such as housing, school, and family finances are intrinsic to the overall well-being of children with special healthcare needs.

The guidance, which is the first issued by the AAP on the subject, encourages clinicians to follow the recommendations set forth in the AAP's 2017 Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents report.

For example, pediatricians should include a family-centered psychosocial and behavioral assessment at every wellness visit for every child. "The assessment may also include asking about child-social-emotional health, caregiver depression, and other social determinants of health, such as food and housing," according to Gerri Mattson, MD, of the Children and Youth Branch of the Division of Public Health, North Carolina Department of Health and Human Services in Raleigh, who is the lead author of the guidance document.

"At times, the psychosocial factors are not addressed in children with special healthcare needs because there may be many medical issues and concerns," Mattson told Medscape Medical News. Yet, children and youth with special healthcare needs (CYSHCN) are more likely to face emotional or psychological challenges, financial problems, and difficulties in school, including staying motivated in studies and bullying, she explained. "The motivation for this report is to increase awareness about how biological, physical, emotional, and social environments can strongly affect the capacity for children, especially children and youth with special healthcare needs, to thrive and be healthy over their life course."

The need for such a comprehensive care strategy has become more pressing as the epidemiology of children with special healthcare needs has dramatically changed, Mattson explained. "More children with special healthcare needs, especially those with a primary diagnosis of a mental health, behavioral health condition, learning or developmental disability, are being seen by pediatric providers in our communities across the country," she said.

As evidence of that change, she pointed to statistics from the 2016 National Survey of Children's Health that show that more than 19.4% of children in the United States have special healthcare needs and that more than 42% of those with special care needs have an emotional, developmental, or behavioral problem.

Because psychosocial risk and protective factors for children with special healthcare needs can vary by their condition and its treatment, strategies and resources for mitigating risk and enhancing resilience should be tailored to the needs of the child and family.

To this end, in addition to following the Bright Futures recommendations, the new guidance indicates that pediatric care providers should consider the following:

  • Adopting practice transformation strategies, such as those detailed on the AAP Practice Transformation website. Examples include quality improvement patient registries and previsit planning.

  • Using team-based care strategies, care protocols, and dedicated care coordinators where available to identify psychosocial risk and protective factors. Collocation of services, consultations, comanagement, and behavioral health integration into medical home/care teams are possible activities.

  • Collaborating with child care and school staff to monitor progress and improve academic outcomes.

  • Offering flexible payment options and advocating with Medicaid and other insurers for payment redesign that supports a more holistic care approach to meet the unique needs of special needs children and their families and improve accessibility to services.

  • Promoting evidence-based strategies in the medical home and subspecialty settings to support and improve psychosocial development of children with special healthcare needs and to enhance families' resilience.

  • Advocating for research into psychosocial screening tools and interventions tailored to children with special healthcare needs.

  • Advocating for community-based resources to eliminate care disparities for children with special healthcare needs.

The importance of this guidance cannot be overstated, given the dramatic rise in recent years in the number of children with special care needs, the authors stress. The 19.4% prevalence rate noted in the 2016 NSCH report reflects a nearly 29% relative increase over the 15.1% prevalence rate cited in the 2009-2010 NSCH report.

The increase in prevalence cannot be clearly tied to one reason or factor; rather, multiple associations have been identified, Mattson said. "There has been an increase in children with medical complexity, which is possibly related to advances in neonatal care and improved medical technology that increase survival," she said.

"Also, there have been many national and state efforts working to increase screening in medical, child care, and school settings with subsequent evaluation and treatment, and it's reasonable to think that some of these screening efforts and a growing public awareness have led to increased identification of children with special healthcare needs who may have been missed before," she said.

Other explanations that have been posited include the possibility of environmental triggers and perhaps genetic susceptibility in some children, which could account for the increase in the prevalence of certain conditions. "Some authors have suggested that the increases seen in asthma, obesity, mental health conditions, neurodevelopmental disorders, and diabetes are associated with changes in children's social environments over the last several decades, including exposure to indoor allergens, physical activity, diet, and media use," Mattson said.

The increased prevalence indicates that a growing proportion of the pediatric population will benefit from a more holistic approach to care that medical homes are well positioned to provide. "Medical home teams can promote protective psychosocial factors as part of coordinated, comprehensive chronic care for CYSHCN and their families," the authors state.

The authors have disclosed no relevant financial relationships.

Pediatrics. Published online December 18, 2018. Full text

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