Children and youth with special health care needs (CYSHCN) and their families may experience a variety of internal (ie, emotional and behavioral) and external (ie, interpersonal, financial, housing, and educational) psychosocial factors that can influence their health and wellness. Many CYSHCN and their families are resilient and thrive. Medical home teams can partner with CYSHCN and their families to screen for, evaluate, and promote psychosocial health to increase protective factors and ameliorate risk factors. Medical home teams can promote protective psychosocial factors as part of coordinated, comprehensive chronic care for CYSHCN and their families. A team-based care approach may entail collaboration across the care spectrum, including youth, families, behavioral health providers, specialists, child care providers, schools, social services, and other community agencies. The purpose of this clinical report is to raise awareness of the impact of psychosocial factors on the health and wellness of CYSHCN and their families. This clinical report provides guidance for pediatric providers to facilitate and coordinate care that can have a positive influence on the overall health, wellness, and quality of life of CYSHCN and their families.

Children and youth with special health care needs (CYSHCN) are “those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required for children generally.”1 This definition has been used to guide the development of family‐centered, coordinated systems of care for children with special needs and families who are served by many public and private health systems, most notably by state Title V block programs administered by the federal Maternal and Child Health Bureau. This report highlights psychosocial internal (emotional or behavioral) and external (interpersonal, housing, and financial) risk and protective factors that impact growth and development, health and wellness, and quality of life for CYSHCN and their families.2 The report offers guidance for pediatric providers to address psychosocial risk and protective factors as part of comprehensive, coordinated care within the medical home. Such care should be delivered in partnership with families, mental and behavioral health providers, child care settings, schools, social services, and other professionals and community agencies across the care spectrum. This report complements other pediatric literature in which screening and surveillance, discussion, and the management of threats to social, behavioral, emotional, and mental health in all children are addressed.3,7 

According to the 2016 National Survey of Children’s Health (NSCH), 19.4% of children and youth have special health care needs.8 This is an increase from 15.1% found in the 2009–2010 National Survey of Children with Special Health Care Needs.9 Racial and ethnic disparities are seen in prevalence, resource use, and survival rates between children who have more medically complex and less complex physical, mental health, and developmental conditions.10,16 Studies reveal that families caring for CYSHCN experience more significant financial and caregiving demands than families of children without special health care needs.8,9,17 Few CYSHCN (3.8%) were reported to be uninsured on the 2016 NSCH, but 29.6% of parents of CYSHCN reported inadequate insurance coverage, compared with 23.6% of parents of children without special health care needs.8 

National surveys have shown a significant increase in the overall prevalence and severity of specific chronic conditions, including asthma, diabetes mellitus, and obesity.11,18,22 The 2015 data from the National Health Interview Survey of the Centers for Disease Control and Prevention show a current overall asthma prevalence of 8.4% among children younger than 18 years. However, there is racial disparity, as non-Hispanic African American children have a 13.4% prevalence of asthma.18 There have been disproportionate increases in the prevalence of obesity and severe obesity among Hispanic, non-Hispanic African American, and American Indian and/or Alaskan native children.20,21,23 There is also a disproportionate increase in type 2 diabetes mellitus, which is believed to be related to increasing rates of obesity,24,25 especially in African American and American Indian and/or Alaskan native children.22,25 

The prevalence of children with medical complexity (CMC), who represent the most resource-intensive subset of CYSHCN, is also increasing. CMC typically include children with congenital, genetic, or acquired multisystem conditions who have multiple subspecialty needs as well as children with a dependence on technology for daily needs.17,26,27 The increase in CMC is possibly related to advances in neonatal care and additional life-saving technologies.28,30 Despite being a small subset of CYSHCN, CMC account for an increasing proportion of pediatric inpatient admissions, with hospitalization rates that doubled between 1991 and 2005.31,32 

The overall prevalence of children with a behavioral, mental health, learning, or developmental disability as their primary chronic health condition is increasing in the United States.6,7 Parent surveys indicate that the prevalence of attention-deficit/hyperactivity disorder (ADHD) (currently 8.9% of children),8 autism spectrum disorders (2.5% of children),8 and bipolar disorders (2.2% among youth)33 have increased over the last 2 decades.6,7,34 ADHD has been found to be highest in the non-Hispanic multiracial group and lowest among Hispanic children. Behavioral or conduct problems are highest among non-Hispanic African American children, and autism spectrum disorders tend to be higher among non-Hispanic white children.7 Speech disorders, ADHD, and learning disabilities are among the leading causes of limitations in play or school for children attributable to a chronic condition, and there has been a receding in importance between 1979 and 2009 in the numbers of respiratory, eye, ear, and orthopedic conditions that cause limitations for children.35 

According to the 2016 NSCH, 42.4% of CYSHCN were reported to have an emotional, developmental, or behavioral issue.8 Behavioral health can strongly influence health and wellness outcomes for all children and especially for CYSHCN.36 Reviews of the literature have shown that children with chronic physical health and developmental conditions are at an increased risk for having co-occurring mental health or behavioral problems or conditions.37,38 Internalizing problems and conditions, ranging from low self-esteem and worry to depression and anxiety, can occur in CYSHCN. CYSHCN also can experience externalizing problems and conditions, ranging from attention problems and defiant and aggressive behaviors to ADHD, conduct disorder, and oppositional defiant disorder.38,40 

Associations of chronic illnesses with psychological and behavioral conditions, such as anxiety and depression, are well described. Such associations may be explained by biological causes, such as inflammatory processes with asthma or diabetes, and psychological causes, such as the stress of living with an adverse and potentially life-threatening condition.36,41,42 Studies in adults reveal that comorbid mental and physical illnesses can result in more health care service needs, functional impairment, and higher medical costs compared with similar physical illnesses without the co-occurring mental health condition.43 Fewer studies have been conducted in children, but 1 study suggests that mental health encounters may encompass a large proportion of outpatient use for some CMC.44 A focus on psychosocial factors and wellness would appear to be an important addition to the overall chronic care model for CYSHCN.36 

The biological, physical, emotional, and social environments strongly affect the capacity for children to be healthy over their life course trajectory.45 External psychosocial factors include social determinants of health (SDH), which are defined by the Kaiser Family Foundation and World Health Organization as the “conditions in which people are born, grow, live, work and age.”46 The Centers for Disease Control and Prevention Essentials for Childhood initiative emphasizes that “[s]afe, stable, nurturing relationships and environments are essential to prevent child maltreatment…and to assure that children reach their full potential” over their lives.47 SDH, such as housing stability and food security, have a positive influence on the health of all children and are recommended to be addressed during well-child visits.5,46,48 Studies suggest that poor housing and neighborhood quality are associated with a greater risk for some CYSHCN experiencing a poorer quality of life.49,50 Food insecurity may also impact CYSHCN specifically if they have increased or specialized nutritional needs or dietary restrictions.51 

CYSHCN have higher rates of exposure to adverse childhood experiences (ACEs) or toxic stress (eg, abuse and domestic violence).8 According to the 2016 NSCH, 37% of CYSHCN had 2 or more ACEs, compared with 18% of children without special health care needs.9 These ACEs are often internalized, but the negative effects may be mitigated over time by protective factors.52,54 In addition, children with 2 or more ACEs are significantly more likely to be considered CYSHCN compared with children with no exposure to ACEs.53 The presence of 2 or more ACEs can be linked to exacerbations of their chronic conditions, an increased risk of developing secondary conditions, poor school engagement, and even an increased risk of repeating a grade in school.52,53 Exposure to 2 or more ACEs may be associated with smoking, using drugs, participating in earlier sexual activity, and performing violent or antisocial acts.53,54 If CYSHCN engage in these risky behaviors, there may be an increased risk for additional short- and long-term physical and mental health problems and difficulties with following treatment recommendations as well as an increased risk for poorer health care outcomes.50,55,56 However, studies show that CYSHCN who learn and show resilience may be able to reduce the negative effects of some ACEs. This mitigation of risk occurs especially when supports are provided for key transition points, such as starting child care, school, and work.52,53 

Children with intellectual or developmental disabilities may be at an increased risk for physical, emotional, and sexual abuse and neglect. The reasons may include inadequate social skills, limited capacity to find help or report abuse, lack of strategies to defend against abuse, or increased exposure to multiple caregivers and settings.57,58 Additional challenges can occur if parents of children with disabilities lack respite, coping skills, or adequate social and community support. These stressors can put some children at risk for failing to receive needed medications or adequate medical care and can lead to abuse or neglect.59 

Additional family stressors not considered ACEs can still negatively affect the health of some CYSHCN. These stressors include, but are not limited to, caregiver burden, poor coping skills, inadequate sleep, limited interactions with extended family and friends, reductions or loss of parental employment, and financial problems.60,65 Family conflict, in particular, can be associated with a greater number of hospitalizations, as seen in 1 study for children with asthma.41 Financial problems may result from multiple and costly medications, equipment, therapies or specialty appointments, and loss of income from taking time off work to care for CYSHCN.17,66 Limited English proficiency in parents and lack of insurance are 2 stressors that may disproportionately affect the health and well-being of some immigrant families of CYSHCN.67 Parenting stress may increase if negative perceptions of their child’s illness occur, potentially leading to additional mental and physical health problems in the parents of some CYSHCN.68 Siblings of some CYSHCN with developmental disabilities and cancer may be at risk for emotional and behavioral problems, difficulties with interpersonal relationships and functioning at school, and psychiatric conditions.69,70 The effects on caregiver and family stress can be even greater in families with children who have higher medical complexity.17,71 

Child care and school settings may struggle to accommodate the needs of CYSHCN, leading to increased stress, poor socialization, and poor school performance.49,50,72,75 Some CYSHCN may lose motivation to do well in school, resulting in lower academic achievement and increased school absences.75 Some CYSHCN may experience bullying, stereotyping, prejudice, or stigmatization from peers or others in their schools or communities. This negative experiences may lead to difficulties in school, including school avoidance.50,76,77 Children with intellectual and developmental disabilities, seizure disorders, and other conditions affecting the central nervous system are at particular risk for school problems because of impairments in brain growth and development78,80 with resultant effects on executive functioning skills.38,78,80,81 Problems with attention, memory, language, and understanding social processes place some CYSHCN at an increased risk for academic failure, poor interpersonal skills, and low self-esteem.38,78,80,82 Negative school experiences may also further exacerbate problems with adherence to medications, therapies, or other health recommendations at school.83 

The cumulative effects of living with and managing a chronic condition may evolve further over the life span of a child.84,85 Certain chronic physical and mental health conditions and treatments, particularly those affecting the central nervous system, may affect neurologic and cognitive function, social development, emotional regulation and awareness, and expressive and receptive communication. These effects may not be readily apparent to families, caregivers, teachers, and health care providers.84,86 Developmental, social, and behavioral problems may be observed when age-appropriate and interpersonal competencies, abilities, and skills are not achieved.38,78,87,90 Escalation in levels of needed medical care can increase the development of additional mental or behavioral health problems or social concerns in children. These developments can present additional challenges in the home and in child care and school settings.38,78,87,88,91,92 

A negative illness perception, low self-esteem, and a belief of a lack of control can increase the risk of a co-occurring mental health concern or diagnosis in some children.93,94 Stress from unrecognized and/or untreated mental health concerns can result in increased cortisol levels, which can negatively affect physiology and metabolism and exacerbate chronic conditions, such as asthma or diabetes.87 Unrecognized and untreated chronic complications among CYSHCN can increase the risk of developing internalizing or externalizing behavioral problems or conditions.95,96 For example, chronic nocturnal symptoms with uncontrolled asthma or undiagnosed sleep apnea with Down syndrome can negatively affect behavioral health and quality of life.97 Co-occurring chronic physical and mental health conditions are associated with an attempted suicide risk in excess of that predicted by the chronic mental health condition alone.98 A focus on behavioral health and wellness as part of chronic care may help improve health outcomes for some CYSHCN and their families.36 

Psychosocial protective factors can be supported at the individual, interpersonal, and community levels. Supportive and stable relationships, processes, and policies that promote resilience benefit children and can buffer against ACEs.99,103 Developmentally appropriate and supported cognitive, language, and communication skills and abilities may be associated with calmer temperament and higher levels of self-esteem, which can aid in coping with a chronic illness.40,104,106 Skills for social competence have been taught by caregivers to encourage cooperation, self-control, assertion, and self-responsibility in children with mobility disorders.99 Protective factors in some children with malignancies include comparing themselves with other children with malignancies instead of healthy peers, using positive reappraisal, spiritual or religious coping, and future-oriented thinking.107,109 

Studies now show the importance of supporting families and communities that help CYSHCN to have positive relationships and interactions.103 Healthy and well-functioning families may offer coping assistance for some CYSHCN.108,110 Cohesive and connected families with stable family structures seem to be most functional.60,110 Studies of children with autism, asthma, and diabetes suggest that instilling positive parenting beliefs helps engage parents in appropriate care.111,114 Education of community members about a child or youth’s medical condition may increase coping and resilience in some families.110 A father’s involvement in the care of a child with a chronic disease has been associated with higher treatment adherence, better psychological adjustment, and improved health for the child.115 Higher social support for caregivers of CYSHCN has been associated with decreased psychological distress in the child and decreased risks for stress, loneliness, depression, and anxiety in caregivers.116 

Schools can be a source of strength when there are positive parent-school partnerships and a supportive, coordinated early intervention system.73,75 Health care providers and schools can collaborate with families on monitoring changes in health status, developing the treatment plan, and ensuring appropriate school staffing.117,118 Schools, in partnership with families and health care providers, can play a significant role in supporting self-management of care for CYSHCN and other elements of health care transition.119 Families, youth, providers, and school and child care staff can develop and modify an Individualized Family Service Plan, Individualized Education Program, 504 plan, or individualized health plan on the basis of medical and psychosocial needs and supports. These supports may include self-management of care and transition to adult health care systems.117,119,122 

Fully supporting protective factors involves the development of community-based systems of care for CYSHCN that address psychosocial aspects of care.123,124 A system of care represents a coordinated network of community-based services and supports, including the family, the medical home, child care providers, and schools. The core values include building on the strengths and needs of the youth and family. This approach has resulted in improvements in multiple domains of individual and family functioning, including the reduction of family stress and strain and increased behavioral and emotional strengths in children.125 

The pediatric medical home is an ideal setting to address psychosocial factors that impact wellness and resilience for CYSHCN and their families. The medical home can conduct ongoing surveillance and screening for psychosocial factors and promote care coordination of needed services and supports.126,127 Longitudinal, relationship-centered care may facilitate discussions about psychosocial factors, address symptoms, and increase adherence to recommendations.127,130 Pediatric primary care and specialty providers can promote team-based care with partners from multiple disciplines by coordinating psychosocial screening, care planning, and interventions. Additional key partners may include care managers, family navigators, social workers, psychologists, professional interpreters, and public health and social service agencies.131 Access to comprehensive care for CYSHCN through a medical home is associated with improvements in health status, access to care, and family satisfaction. Use of a medical home approach is also associated with fewer missed school days for children, issues with child care, missed days of work, and out-of-pocket costs for families.8,9,126,132,134 

In the 2017 Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents, Fourth Edition, the American Academy of Pediatrics (AAP) emphasizes a strength-based approach to comprehensive care and wellness for all children. The need to particularly focus on health and wellness for CYSHCN is also recognized.5 AAP Bright Futures recommendations for preventive pediatric health care include developmental surveillance, general developmental screening, and screening for autism at specific ages during well-child visits.5,135,136 Recommended surveillance and screenings are important even in the presence of an existing chronic physical or mental health condition, a developmental delay, or a disability, when appropriate.

The AAP Bright Futures recommendations include a psychosocial and behavioral assessment at every well-child visit that is “family centered and may include an assessment of child social emotional health, caregiver depression, and social determinants.”5,135Bright Futures and the US Preventive Services Task Force recommend screening for both postpartum depression and depression in adolescents at specified well-child visits.5,137,139 Surveillance or screening for parental socioemotional well-being and SDH outside of the postpartum period may identify additional psychosocial risk factors for CYSHCN.19,50,53,54,60,61,63,65 The AAP policy statement “Poverty and Child Health in the United States”48 and an additional article about redesigning health care to address poverty140 provide recommendations and resources for screening tools for SDH (eg, Safe Environment for Every Kid [SEEK]).

A variety of resources can help pediatric medical home providers address psychosocial risk factors using a team-based approach. These include the AAP Mental Health Initiatives Web site (https://www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/Mental-Health/Pages/Primary-Care-Tools.aspx), a tool kit called Mental Health Screening and Assessment Tools for Primary Care,141 articles and resources from the AAP Task Force on Mental Health published in a June 2010 supplement to Pediatrics,142 and a recent clinical report (“Promoting Optimal Development: Screening for Behavioral and Emotional Problems”4) that provides resources about specific behavioral and emotional tools and processes. The AAP Screening, Technical Assistance, and Resource Center provides a variety of resources about screening, discussion, management, and referral in primary care around child development, maternal depression, and SDH for young children (https://www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/Screening/Pages/default.aspx). These developmental, autism, and social-emotional screening tools were validated in the general population and normalized for typically developing children.4,5,139,141,143,144 Validated quality-of-life screening questions have been used across several conditions, although more in research settings than in primary care.145 Standardized care approaches and tools can be used to facilitate self-management that addresses psychosocial needs, adherence to treatment plans, and leverage of supportive community resources.146,147 

Pediatric providers are encouraged to develop mental health competencies for direct patient care and for coordination with community resources.3 Pediatric providers can use evidence-based techniques (eg, motivational interviewing) to address mental health concerns and social determinants identified with screening in the medical home setting. Such approaches may be used by providers while waiting for further evaluation of the child and even while a child is receiving treatment by a mental health provider.3,130 Interventions may include counseling about family-focused physical activity guidelines, good nutrition, and improved sleep routines.36,131 Common elements among psychosocial interventions include the use of motivational interviewing strategies to communicate hope, empathy, and loyalty; use of plain language; asking permission to ask questions or share information; and partnering with families.130 Such elements have been found to be effective in building alliances, increasing disclosure, and facilitating discussions about psychosocial strengths and concerns.129,130 Pediatric providers on the care team may not serve as the primary provider to deliver mental health counseling and interventions, but they can support integrated interdisciplinary efforts and partnerships.36 A team-based approach may include the use of designated staff for wellness promotion, collocation of services (eg, social workers and psychologists), or referrals to community services for mental health assessment, counseling, and interventions.131 

Behavioral health integration has been described as a useful “approach and model of delivering care that comprehensively addresses the primary care, behavioral health, specialty care, and social support needs of children and youth with behavioral health issues in a manner that is continuous and family-centered.”148 Behavioral health integration can aid the medical home as needs occur from infancy through adolescence and into young adulthood.149 Practices with collocated behavioral health providers or real-time access to short-term mental health support have seen improved timely evaluations of child and family functioning, increased referrals for more specialized evaluations, and improved access to direct behavioral health services for CYSHCN.3,150 Mindfulness and relaxation training may also be effective with stress and can be taught to parents and children.151 However, not all practices have collocated or integrated behavioral health providers; therefore, pediatric providers are encouraged, as mentioned earlier, to develop some mental health competencies for use in primary care to enhance their delivery of direct patient care and coordination with community resources.3 Formal care coordinators, as part of the medical home team, can assist with identifying and strengthening protective relationships to help support and monitor strategies and interventions with child care providers, schools, home health agencies, behavioral health providers, social service workers, and a variety of other professionals.152 Care coordinators can be employed by the practice or another entity and can help facilitate management and referral and follow-up related to community resources.3,140,152 

These community relationships can help increase awareness, communication, and transparency of the care directed by the medical home.152 The medical home, in partnership with care coordinators and community partners, may promote planned transition from pediatric to adult health care that addresses psychosocial risk and protective factors. Planned transition includes structured assessments and planning (beginning in early adolescence) addressing SDH as well as guardianship and other legal issues. The goal is to minimize breaks in continuous care and lessen parental concern, particularly for chronic conditions accompanied by cognitive impairment.119 

Implementation of the medical home model entails a quality improvement approach and practice transformation activities. Such activities may include a patient registry, care tracking, team-based care, and special care protocols. Strategies could include a previsit process that may include routine psychosocial screening, scheduling additional time during appointments, and identifying a team member and/or care coordinator. Additional efforts include electronic health record integration and workflow changes to incorporate screening, discussion, referrals, and follow-up as part of a comprehensive, integrated plan of care. Such a plan of care includes patient- and family-identified psychosocial goals and priorities.48,124,153 

Individual provider and practice challenges to the medical home include time, training, and lack of knowledge about available resources.4,154 Community and system barriers include inadequate payments, a shortage of pediatric psychiatrists and developmental-behavioral pediatricians,155 limited community mental health resources, and limited services and abilities in communities to address SDH (eg, housing).48,149 Flexible population-based payment models and the use of payment incentives could help to encourage increased management of psychosocial health and well-being as part of care for chronic conditions and could help to increase the use of more screening tools.48,153 

Pediatricians represent only 1 stakeholder interested in the comprehensive system of care for CYSHCN and their families. Title V Maternal and Child Health programs, health plans, insurers, state Medicaid and Children’s Health Insurance Program agencies, children’s hospitals, health services researchers, families, and consumers developed national standards for a system of care for CYSHCN in 2014 and then updated these standards in 2017.124 

Recommendations for pediatric medical home teams include developing processes and protocols in collaboration with other community agencies (eg, Part C early intervention and home health) and professionals. These agencies may also perform psychosocial screenings and refer CYSHCN for further assessment of concerns. Collaboration could allow the medical home team to reduce duplication of efforts and ensure referred services regardless of who conducted the screening. Service linkage, timely communication, and appropriate data sharing can be used to promote an integrated plan of care that includes psychosocial goals and priorities from CSYHCN and their families.124 The resource titled Managing Chronic Health Needs in Child Care and Schools72 and the AAP policy statement on the role of school nurses and the medical home117 offer collaborative strategies to support social-emotional health, which influences health, school attendance, and academic performance.117,118 

Pediatric medical home providers and parents can learn about and be linked to several home- and community-based services and supports to help assess and address psychosocial needs for CYSHCN and their families. Respite care, palliative care, and hospice care and home-based services are examples of these services.124 Parents may be supported through home visiting and parenting support programs regardless of whether they are specific for CYSHCN.156,158 One parenting program, called the Positive Parenting Program or Triple P, offers a series of parenting modules called Stepping Stones, which was developed specifically for use with parents of children with developmental disabilities. Stepping Stones modules address self-efficacy, self-sufficiency, self-management, personal agency, and problem solving with parents of children with developmental disabilities. However, not all states offer Triple P Stepping Stones modules, and some states that do offer it have limited access to these modules.159,160 Parent-to-parent support groups may help some families of CYSHCN share a social identity, experience personal growth, and learn coping strategies.161 

Several programs serve as clearinghouses about services and supports for families. One example is the early childhood coordinated referral and system building programs called Help Me Grow (www.helpmegrownational.org/). Help Me Grow is now available in 26 states to help connect providers and families to developmental screening and services.140 The Community Services Locator (https://www.ncemch.org/knowledge/community.php) is another clearinghouse of information that provides Web sites and phone numbers that can be used to assist with accessing national, state, and local resources for child care, early childhood education, special education services, family support, financial support, health and wellness, and parenting programs.140 A third example is the United Way 211 line (http://www.211.org/pages/about), which is a telephone and Internet-based resource that is available 24 hours a day, 7 days a week, throughout most of the United States.140 The 211 line can provide information about a wide variety of resources in multiple languages about housing, food pantries, and utilities in addition to child care, early education, and many other services to address SDH.140 

Health and wellness for CYSHCN are particularly sensitive to psychosocial risk and protective factors. Pediatric providers, particularly from the primary care–based medical home, are in the position to screen for, manage, and coordinate longitudinal care in which psychosocial factors of health among CYSHCN and their families are addressed. The following suggestions are offered to pediatricians involved in caring for CYSHCN:

  1. Follow Bright Futures recommendations and guidance for CYSHCN and their families. Recommendations include the promotion of health and wellness as well as timely assessments of child social-emotional health, parental and/or caregiver depression, and SDH.

  2. Use practice transformation strategies, such as quality improvement, patient registries, and previsit planning, to promote psychosocial screening and assessment, referrals, and follow-up among CYSHCN and their families. A good resource is the AAP Practice Transformation site (https://www.aap.org/en-us/professional-resources/practice-Transformation/Pages/practice-transformation.aspx).

  3. Use team-based care strategies, care protocols, and dedicated care coordinators (if available) to recognize psychosocial protective factors and ameliorate risk factors. This strategy may involve collocation, consultation, comanagement, and/or integration with behavioral health specialists as part of medical home and specialty care teams.

  4. Consider strategies for working with child care and school staff to monitor progress, reduce absences, and improve learning experiences and academic performance for CYSHCN.

  5. Advocate for flexible payment redesign with Medicaid and other insurers. Payment redesign may better support wellness and chronic care management for CYSHCN and their families. Flexible payment redesign may include payments for mental health treatment, care coordination, and collocation or comanagement with behavioral health and other specialists or disciplines.

  6. Promote evidence-based interventions and strategies in the medical home and subspecialty settings to support psychosocial development of CYSHCN, parenting competencies, and family resilience.

  7. Advocate for research on adaptions of existing psychosocial screening tools and interventions for CYSHCN.

  8. Advocate for community-based resources and strategies to address SDH and the reduction of disparities for CYSHCN and their families.

  9. Pediatric providers and state AAP chapters can partner with Title V Maternal and Child Health CYSHCN programs in supporting implementation of the Association of Maternal and Child Health Program’s Standards for Systems of Care for CYSHCN. These standards include increasing access for CYSHCN to quality medical homes, ease of use of community services, and transitioning across the life span.

     
  • AAP

    American Academy of Pediatrics

  •  
  • ACE

    adverse childhood experience

  •  
  • ADHD

    attention-deficit/hyperactivity disorder

  •  
  • CMC

    children with medical complexity

  •  
  • CYSHCN

    children and youth with special health care needs

  •  
  • NSCH

    National Survey of Children’s Health

  •  
  • SDH

    social determinants of health

Drs Mattson and Kuo conceptualized, designed, drafted, reviewed, and revised the manuscript, approved the final manuscript as submitted, and agree to be accountable for all aspects of the work.

This document is copyrighted and is property of the American Academy of Pediatrics and its Board of Directors. All authors have filed conflict of interest statements with the American Academy of Pediatrics. Any conflicts have been resolved through a process approved by the Board of Directors. The American Academy of Pediatrics has neither solicited nor accepted any commercial involvement in the development of the content of this publication.

Clinical reports from the American Academy of Pediatrics benefit from expertise and resources of liaisons and internal (AAP) and external reviewers. However, clinical reports from the American Academy of Pediatrics may not reflect the views of the liaisons or the organizations or government agencies that they represent.

The guidance in this report does not indicate an exclusive course of treatment or serve as a standard of medical care. Variations, taking into account individual circumstances, may be appropriate.

All clinical reports from the American Academy of Pediatrics automatically expire 5 years after publication unless reaffirmed, revised, or retired at or before that time.

FUNDING: No external funding.

1
McPherson
M
,
Arango
P
,
Fox
H
, et al
.
A new definition of children with special health care needs.
Pediatrics
.
1998
;
102
(
1 pt 1
):
137
140
[PubMed]
2
Fee
RJ
,
Hinton
VJ
.
Resilience in children diagnosed with a chronic neuromuscular disorder.
J Dev Behav Pediatr
.
2011
;
32
(
9
):
644
650
[PubMed]
3
Committee on Psychosocial Aspects of Child and Family Health
;
Task Force on Mental Health
.
Policy statement–the future of pediatrics: mental health competencies for pediatric primary care.
Pediatrics
.
2009
;
124
(
1
):
410
421
4
Weitzman
C
,
Wegner
L
;
Section on Developmental and Behavioral Pediatrics
;
Committee on Psychosocial Aspects of Child and Family Health
;
Council on Early Childhood
;
Society for Developmental and Behavioral Pediatrics
;
American Academy of Pediatrics
.
Promoting optimal development: screening for behavioral and emotional problems [published correction appears in Pediatrics. 2015;135(5):946].
Pediatrics
.
2015
;
135
(
2
):
384
395
[PubMed]
5
Hagan
JF
,
Shaw
JS
,
Duncan
PM
, eds.
Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents
. 4th ed.
Elk Grove Village, IL
:
American Academy of Pediatrics
;
2017
6
Boyle
CA
,
Boulet
S
,
Schieve
LA
, et al
.
Trends in the prevalence of developmental disabilities in US children, 1997-2008.
Pediatrics
.
2011
;
127
(
6
):
1034
1042
[PubMed]
7
Perou
R
,
Bitsko
RH
,
Blumberg
SJ
, et al;
Centers for Disease Control and Prevention (CDC)
.
Mental health surveillance among children–United States, 2005-2011.
MMWR Suppl
.
2013
;
62
(
2
):
1
35
[PubMed]
8
Child and Adolescent Health Measurement Initiative
;
Data Resource Center for Child and Adolescent Health
. 2016 National Survey of Children’s Health (NSCH) data query. Available at: http://childhealthdata.org/browse/survey/results?q=4562&r. Accessed March 5, 2018
9
US Department of Health and Human Services
;
Health Resources and Services Administration
;
Maternal and Child Health Bureau
.
The National Survey of Children With Special Health Care Needs Chartbook 2009–2010
.
Rockville, MD
:
US Department of Health and Human Services
;
2013
10
Berry
JG
,
Bloom
S
,
Foley
S
,
Palfrey
JS
.
Health inequity in children and youth with chronic health conditions.
Pediatrics
.
2010
;
126
(
suppl 3
):
S111
S119
[PubMed]
11
Akinbami
LJ
,
Moorman
JE
,
Garbe
PL
,
Sondik
EJ
.
Status of childhood asthma in the United States, 1980-2007.
Pediatrics
.
2009
;
123
(
suppl 3
):
S131
S145
[PubMed]
12
Wu
YW
,
Croen
LA
,
Shah
SJ
,
Newman
TB
,
Najjar
DV
.
Cerebral palsy in a term population: risk factors and neuroimaging findings.
Pediatrics
.
2006
;
118
(
2
):
690
697
[PubMed]
13
Lipton
R
,
Good
G
,
Mikhailov
T
,
Freels
S
,
Donoghue
E
.
Ethnic differences in mortality from insulin-dependent diabetes mellitus among people less than 25 years of age.
Pediatrics
.
1999
;
103
(
5 pt 1
):
952
956
[PubMed]
14
Centers for Disease Control and Prevention (CDC)
.
Racial disparities in median age at death of persons with Down syndrome–United States, 1968-1997.
MMWR Morb Mortal Wkly Rep
.
2001
;
50
(
22
):
463
465
[PubMed]
15
Boneva
RS
,
Botto
LD
,
Moore
CA
,
Yang
Q
,
Correa
A
,
Erickson
JD
.
Mortality associated with congenital heart defects in the United States: trends and racial disparities, 1979-1997.
Circulation
.
2001
;
103
(
19
):
2376
2381
[PubMed]
16
Linabery
AM
,
Ross
JA
.
Childhood and adolescent cancer survival in the US by race and ethnicity for the diagnostic period 1975-1999.
Cancer
.
2008
;
113
(
9
):
2575
2596
[PubMed]
17
Kuo
DZ
,
Cohen
E
,
Agrawal
R
,
Berry
JG
,
Casey
PH
.
A national profile of caregiver challenges among more medically complex children with special health care needs.
Arch Pediatr Adolesc Med
.
2011
;
165
(
11
):
1020
1026
[PubMed]
18
Centers for Disease Control and Prevention
. Most recent asthma data. Available at: https://www.cdc.gov/asthma/most_recent_data.htm. Accessed April 3, 2017
19
Perrin
JM
,
Bloom
SR
,
Gortmaker
SL
.
The increase of childhood chronic conditions in the United States.
JAMA
.
2007
;
297
(
24
):
2755
2759
[PubMed]
20
Kelly
AS
,
Barlow
SE
,
Rao
G
, et al;
American Heart Association
;
Atherosclerosis, Hypertension, and Obesity in the Young Committee of the Council on Cardiovascular Disease in the Young
;
Council on Nutrition, Physical Activity and Metabolism
;
Council on Clinical Cardiology
.
Severe obesity in children and adolescents: identification, associated health risks, and treatment approaches: a scientific statement from the American Heart Association.
Circulation
.
2013
;
128
(
15
):
1689
1712
[PubMed]
21
Skinner
AC
,
Skelton
JA
.
Prevalence and trends in obesity and severe obesity among children in the United States, 1999-2012.
JAMA Pediatr
.
2014
;
168
(
6
):
561
566
[PubMed]
22
Dabelea
D
,
Mayer-Davis
EJ
,
Saydah
S
, et al;
SEARCH for Diabetes in Youth Study
.
Prevalence of type 1 and type 2 diabetes among children and adolescents from 2001 to 2009.
JAMA
.
2014
;
311
(
17
):
1778
1786
[PubMed]
23
Adams
AK
,
Quinn
RA
,
Prince
RJ
.
Low recognition of childhood overweight and disease risk among Native-American caregivers.
Obes Res
.
2005
;
13
(
1
):
146
152
[PubMed]
24
Reinehr
T
.
Type 2 diabetes mellitus in children and adolescents.
World J Diabetes
.
2013
;
4
(
6
):
270
281
[PubMed]
25
Goran
MI
,
Ball
GD
,
Cruz
ML
.
Obesity and risk of type 2 diabetes and cardiovascular disease in children and adolescents.
J Clin Endocrinol Metab
.
2003
;
88
(
4
):
1417
1427
[PubMed]
26
Cohen
E
,
Kuo
DZ
,
Agrawal
R
, et al
.
Children with medical complexity: an emerging population for clinical and research initiatives.
Pediatrics
.
2011
;
127
(
3
):
529
538
[PubMed]
27
Berry
JG
,
Hall
M
,
Neff
J
, et al
.
Children with medical complexity and Medicaid: spending and cost savings.
Health Aff (Millwood)
.
2014
;
33
(
12
):
2199
2206
[PubMed]
28
van der Lee
JH
,
Mokkink
LB
,
Grootenhuis
MA
,
Heymans
HS
,
Offringa
M
.
Definitions and measurement of chronic health conditions in childhood: a systematic review.
JAMA
.
2007
;
297
(
24
):
2741
2751
[PubMed]
29
Stiller
C
.
Epidemiology of cancer in adolescents.
Med Pediatr Oncol
.
2002
;
39
(
3
):
149
155
[PubMed]
30
van der Veen
WJ
.
The small epidemiologic transition: further decrease in infant mortality due to medical intervention during pregnancy and childbirth, yet no decrease in childhood disabilities [in Dutch].
Ned Tijdschr Geneeskd
.
2003
;
147
(
9
):
378
381
[PubMed]
31
Simon
TD
,
Berry
J
,
Feudtner
C
, et al
.
Children with complex chronic conditions in inpatient hospital settings in the United States.
Pediatrics
.
2010
;
126
(
4
):
647
655
[PubMed]
32
Burns
KH
,
Casey
PH
,
Lyle
RE
,
Bird
TM
,
Fussell
JJ
,
Robbins
JM
.
Increasing prevalence of medically complex children in US hospitals.
Pediatrics
.
2010
;
126
(
4
):
638
646
[PubMed]
33
Merikangas
KR
,
Cui
L
,
Kattan
G
,
Carlson
GA
,
Youngstrom
EA
,
Angst
J
.
Mania with and without depression in a community sample of US adolescents.
Arch Gen Psychiatry
.
2012
;
69
(
9
):
943
951
[PubMed]
34
Visser
SN
,
Danielson
ML
,
Bitsko
RH
, et al
.
Trends in the parent-report of health care provider-diagnosed and medicated attention-deficit/hyperactivity disorder: United States, 2003-2011.
J Am Acad Child Adolesc Psychiatry
.
2014
;
53
(
1
):
34
46.e2
[PubMed]
35
Halfon
N
,
Houtrow
A
,
Larson
K
,
Newacheck
PW
.
The changing landscape of disability in childhood.
Future Child
.
2012
;
22
(
1
):
13
42
[PubMed]
36
Boat
TF
,
Filigno
S
,
Amin
RS
.
Wellness for families of children with chronic health disorders.
JAMA Pediatr
.
2017
;
171
(
9
):
825
826
[PubMed]
37
Hysing
M
,
Elgen
I
,
Gillberg
C
,
Lie
SA
,
Lundervold
AJ
.
Chronic physical illness and mental health in children. Results from a large-scale population study.
J Child Psychol Psychiatry
.
2007
;
48
(
8
):
785
792
[PubMed]
38
Pinquart
M
,
Shen
Y
.
Behavior problems in children and adolescents with chronic physical illness: a meta-analysis.
J Pediatr Psychol
.
2011
;
36
(
9
):
1003
1016
[PubMed]
39
Inkelas
M
,
Raghavan
R
,
Larson
K
,
Kuo
AA
,
Ortega
AN
.
Unmet mental health need and access to services for children with special health care needs and their families.
Ambul Pediatr
.
2007
;
7
(
6
):
431
438
[PubMed]
40
Theunissen
SC
,
Rieffe
C
,
Netten
AP
, et al
.
Self-esteem in hearing-impaired children: the influence of communication, education, and audiological characteristics.
PLoS One
.
2014
;
9
(
4
):
e94521
[PubMed]
41
Goodwin
RD
,
Bandiera
FC
,
Steinberg
D
,
Ortega
AN
,
Feldman
JM
.
Asthma and mental health among youth: etiology, current knowledge and future directions.
Expert Rev Respir Med
.
2012
;
6
(
4
):
397
406
[PubMed]
42
Hood
KK
,
Beavers
DP
,
Yi-Frazier
J
, et al
.
Psychosocial burden and glycemic control during the first 6 years of diabetes: results from the SEARCH for Diabetes in Youth study.
J Adolesc Health
.
2014
;
55
(
4
):
498
504
[PubMed]
43
Melek
S
,
Norris
D
.
Chronic Conditions and Comorbid Psychological Disorders
.
Seattle, WA
:
Milliman
;
2008
44
Kuo
DZ
,
Melguizo-Castro
M
,
Goudie
A
,
Nick
TG
,
Robbins
JM
,
Casey
PH
.
Variation in child health care utilization by medical complexity.
Matern Child Health J
.
2015
;
19
(
1
):
40
48
[PubMed]
45
Fine
A
,
Kotelchuck
M
,
Adess
N
,
Pies
C
.
Policy Brief. A New Agenda for MCH Policy and Programs: Integrating a Life Course Perspective
.
Martinez, CA
:
Contra Costa Health Services
;
2009
46
Heiman
HJ
,
Artigo
S
.
Beyond Health Care: The Role of Social Determinants in Promoting Health and Health Equity
.
San Francisco, CA
:
Kaiser Family Foundation
;
2015
. Available at: https://www.issuelab.org/resources/22899/22899.pdf. Accessed October 24, 2018
47
Centers for Disease Control and Prevention, National Center for Injury Prevention and Control, Division of Violence Prevention
. Essentials for childhood: steps to create safe, stable, nurturing relationships and environments. Available at: https://www.cdc.gov/violenceprevention/pdf/essentials_for_childhood_framework.pdf. Accessed November 4, 2017
48
Council on Community Pediatrics
.
Poverty and child health in the United States.
Pediatrics
.
2016
;
137
(
4
):
e20160339
[PubMed]
49
Coutinho
MT
,
McQuaid
EL
,
Koinis-Mitchell
D
.
Contextual and cultural risks and their association with family asthma management in urban children.
J Child Health Care
.
2013
;
17
(
2
):
138
152
[PubMed]
50
Atkinson
M
,
Rees
D
,
Davis
L
.
Disability and economic disadvantage: facing the facts.
Arch Dis Child
.
2015
;
100
(
4
):
305
307
[PubMed]
51
Rose-Jacobs
R
,
Fiore
JG
,
de Cuba
SE
, et al
.
Children with special health care needs, supplemental security income, and food insecurity.
J Dev Behav Pediatr
.
2016
;
37
(
2
):
140
147
[PubMed]
52
Bethell
CD
,
Newacheck
PW
,
Fine
A
, et al
.
Optimizing health and health care systems for children with special health care needs using the life course perspective.
Matern Child Health J
.
2014
;
18
(
2
):
467
477
[PubMed]
53
Bethell
CD
,
Newacheck
P
,
Hawes
E
,
Halfon
N
.
Adverse childhood experiences: assessing the impact on health and school engagement and the mitigating role of resilience.
Health Aff (Millwood)
.
2014
;
33
(
12
):
2106
2115
[PubMed]
54
Anda
RF
,
Felitti
VJ
,
Bremner
JD
, et al
.
The enduring effects of abuse and related adverse experiences in childhood. A convergence of evidence from neurobiology and epidemiology.
Eur Arch Psychiatry Clin Neurosci
.
2006
;
256
(
3
):
174
186
[PubMed]
55
Bonnie
RJ
,
Stratton
K
,
Kwan
LY
, eds;
Committee on the Public Health Implications of Raising the Minimum Age for Purchasing Tobacco Products
;
Board on Population Health and Public Health Practice
;
Institute of Medicine
.
Public Health Implications of Raising the Minimum Age of Legal Access to Tobacco Products
.
Washington, DC
:
National Academies Press
;
2015
56
Weitzman
ER
,
Ziemnik
RE
,
Huang
Q
,
Levy
S
.
Alcohol and marijuana use and treatment nonadherence among medically vulnerable youth.
Pediatrics
.
2015
;
136
(
3
):
450
457
[PubMed]
57
Murphy
NA
,
Elias
ER
.
Sexuality of children and adolescents with developmental disabilities.
Pediatrics
.
2006
;
118
(
1
):
398
403
58
Martinello
E
.
Reviewing risks factors of individuals with intellectual disabilities as perpetrators of sexually abusive behaviors.
Sex Disabil
.
2015
;
33
(
2
):
269
278
59
Hibbard
RA
,
Desch
LW
;
American Academy of Pediatrics Committee on Child Abuse and Neglect
;
American Academy of Pediatrics Council on Children With Disabilities
.
Maltreatment of children with disabilities.
Pediatrics
.
2007
;
119
(
5
):
1018
1025
[PubMed]
60
Churchill
SS
,
Villareale
NL
,
Monaghan
TA
,
Sharp
VL
,
Kieckhefer
GM
.
Parents of children with special health care needs who have better coping skills have fewer depressive symptoms.
Matern Child Health J
.
2010
;
14
(
1
):
47
57
[PubMed]
61
Hatzmann
J
,
Peek
N
,
Heymans
H
,
Maurice-Stam
H
,
Grootenhuis
M
.
Consequences of caring for a child with a chronic disease: employment and leisure time of parents.
J Child Health Care
.
2014
;
18
(
4
):
346
357
[PubMed]
62
Meltzer
LJ
,
Booster
GD
.
Sleep disturbance in caregivers of children with respiratory and atopic disease.
J Pediatr Psychol
.
2016
;
41
(
6
):
643
650
[PubMed]
63
Siden
H
,
Steele
R
.
Charting the territory: children and families living with progressive life-threatening conditions [published correction appears in Paediatr Child Health. 2015;20(8):466–467].
Paediatr Child Health
.
2015
;
20
(
3
):
139
144
[PubMed]
64
Fedele
DA
,
Grant
DM
,
Wolfe-Christensen
C
,
Mullins
LL
,
Ryan
JL
.
An examination of the factor structure of parenting capacity measures in chronic illness populations.
J Pediatr Psychol
.
2010
;
35
(
10
):
1083
1092
[PubMed]
65
Cidav
Z
,
Marcus
SC
,
Mandell
DS
.
Implications of childhood autism for parental employment and earnings.
Pediatrics
.
2012
;
129
(
4
):
617
623
[PubMed]
66
Romley
JA
,
Shah
AK
,
Chung
PJ
,
Elliott
MN
,
Vestal
KD
,
Schuster
MA
.
Family-provided health care for children with special health care needs.
Pediatrics
.
2017
;
139
(
1
):
e20161287
[PubMed]
67
Singh
GK
,
Yu
SM
,
Kogan
MD
.
Health, chronic conditions, and behavioral risk disparities among U.S. immigrant children and adolescents.
Public Health Rep
.
2013
;
128
(
6
):
463
479
[PubMed]
68
Cousino
MK
,
Hazen
RA
.
Parenting stress among caregivers of children with chronic illness: a systematic review.
J Pediatr Psychol
.
2013
;
38
(
8
):
809
828
[PubMed]
69
Goudie
A
,
Havercamp
S
,
Jamieson
B
,
Sahr
T
.
Assessing functional impairment in siblings living with children with disability.
Pediatrics
.
2013
;
132
(
2
). Available at: www.pediatrics.org/cgi/content/full/132/2/e476
[PubMed]
70
Houtzager
BA
,
Oort
FJ
,
Hoekstra-Weebers
JE
,
Caron
HN
,
Grootenhuis
MA
,
Last
BF
.
Coping and family functioning predict longitudinal psychological adaptation of siblings of childhood cancer patients.
J Pediatr Psychol
.
2004
;
29
(
8
):
591
605
[PubMed]
71
Rehm
RS
.
Nursing’s contribution to research about parenting children with complex chronic conditions: an integrative review, 2002 to 2012.
Nurs Outlook
.
2013
;
61
(
5
):
266
290
[PubMed]
72
Donoghue
EA
,
Kraft
CA
, eds.
Managing Chronic Health Needs in Child Care and Schools
.
Elk Grove Village, IL
:
American Academy of Pediatrics
;
2010
73
Murdock
KK
,
Robinson
EM
,
Adams
SK
,
Berz
J
,
Rollock
MJ
.
Family-school connections and internalizing problems among children living with asthma in urban, low-income neighborhoods.
J Child Health Care
.
2009
;
13
(
3
):
275
294
[PubMed]
74
O’Connor
M
,
Howell-Meurs
S
,
Kvalsvig
A
,
Goldfeld
S
.
Understanding the impact of special health care needs on early school functioning: a conceptual model.
Child Care Health Dev
.
2015
;
41
(
1
):
15
22
[PubMed]
75
Forrest
CB
,
Bevans
KB
,
Riley
AW
,
Crespo
R
,
Louis
TA
.
School outcomes of children with special health care needs.
Pediatrics
.
2011
;
128
(
2
):
303
312
[PubMed]
76
Vranda
MN
,
Mothi
SN
.
Psychosocial issues of children infected with HIV/AIDS.
Indian J Psychol Med
.
2013
;
35
(
1
):
19
22
[PubMed]
77
Van Cleave
J
,
Davis
MM
.
Bullying and peer victimization among children with special health care needs.
Pediatrics
.
2006
;
118
(
4
). Available at: www.pediatrics.org/cgi/content/full/118/4/e1212
[PubMed]
78
Pinquart
M
,
Teubert
D
.
Academic, physical, and social functioning of children and adolescents with chronic physical illness: a meta-analysis.
J Pediatr Psychol
.
2012
;
37
(
4
):
376
389
[PubMed]
79
Leitner
Y
.
The co-occurrence of autism and attention deficit hyperactivity disorder in children - what do we know?
Front Hum Neurosci
.
2014
;
8
:
268
[PubMed]
80
Liogier d’Ardhuy
X
,
Edgin
JO
,
Bouis
C
, et al
.
Assessment of cognitive scales to examine memory, executive function and language in individuals with Down syndrome: implications of a 6-month observational study.
Front Behav Neurosci
.
2015
;
9
:
300
[PubMed]
81
Schott
N
,
Holfelder
B
.
Relationship between motor skill competency and executive function in children with Down’s syndrome.
J Intellect Disabil Res
.
2015
;
59
(
9
):
860
872
[PubMed]
82
Hajek
CA
,
Yeates
KO
,
Anderson
V
, et al
.
Cognitive outcomes following arterial ischemic stroke in infants and children.
J Child Neurol
.
2014
;
29
(
7
):
887
894
[PubMed]
83
Gidman
W
,
Cowley
J
,
Mullarkey
C
,
Gibson
L
.
Barriers to medication adherence in adolescents within a school environment [abstract].
Arch Dis Child
.
2011
;
96
(
suppl 1
):
A64
84
Berg
AT
.
Epilepsy, cognition, and behavior: the clinical picture.
Epilepsia
.
2011
;
52
(
suppl 1
):
7
12
[PubMed]
85
Packer
RJ
,
Gurney
JG
,
Punyko
JA
, et al
.
Long-term neurologic and neurosensory sequelae in adult survivors of a childhood brain tumor: childhood cancer survivor study.
J Clin Oncol
.
2003
;
21
(
17
):
3255
3261
[PubMed]
86
Reiter-Purtill
J
,
Vannatta
K
,
Gerhardt
CA
,
Correll
J
,
Noll
RB
.
A controlled longitudinal study of the social functioning of children who completed treatment of cancer.
J Pediatr Hematol Oncol
.
2003
;
25
(
6
):
467
473
[PubMed]
87
Cottrell
D
.
Prevention and treatment of psychiatric disorders in children with chronic physical illness.
Arch Dis Child
.
2015
;
100
(
4
):
303
304
[PubMed]
88
Hocking
MC
,
McCurdy
M
,
Turner
E
, et al
.
Social competence in pediatric brain tumor survivors: application of a model from social neuroscience and developmental psychology.
Pediatr Blood Cancer
.
2015
;
62
(
3
):
375
384
[PubMed]
89
Walterfang
M
,
Bonnot
O
,
Mocellin
R
,
Velakoulis
D
.
The neuropsychiatry of inborn errors of metabolism.
J Inherit Metab Dis
.
2013
;
36
(
4
):
687
702
[PubMed]
90
Rantanen
K
,
Eriksson
K
,
Nieminen
P
.
Social competence in children with epilepsy--a review.
Epilepsy Behav
.
2012
;
24
(
3
):
295
303
[PubMed]
91
Ingerski
LM
,
Modi
AC
,
Hood
KK
, et al
.
Health-related quality of life across pediatric chronic conditions.
J Pediatr
.
2010
;
156
(
4
):
639
644
[PubMed]
92
Kirk
S
,
Glendinning
C
.
Developing services to support parents caring for a technology-dependent child at home.
Child Care Health Dev
.
2004
;
30
(
3
):
209
218; discussion 219
[PubMed]
93
Zeltner
NA
,
Huemer
M
,
Baumgartner
MR
,
Landolt
MA
.
Quality of life, psychological adjustment, and adaptive functioning of patients with intoxication-type inborn errors of metabolism - a systematic review.
Orphanet J Rare Dis
.
2014
;
9
:
159
[PubMed]
94
Rizou
I
,
De Gucht
V
,
Papavasiliou
A
,
Maes
S
.
Illness perceptions determine psychological distress and quality of life in youngsters with epilepsy.
Epilepsy Behav
.
2015
;
46
:
144
150
[PubMed]
95
May
ME
,
Kennedy
CH
.
Health and problem behavior among people with intellectual disabilities.
Behav Anal Pract
.
2010
;
3
(
2
):
4
12
[PubMed]
96
Sivertsen
B
,
Hysing
M
,
Elgen
I
,
Stormark
KM
,
Lundervold
AJ
.
Chronicity of sleep problems in children with chronic illness: a longitudinal population-based study.
Child Adolesc Psychiatry Ment Health
.
2009
;
3
(
1
):
22
[PubMed]
97
Boergers
J
,
Koinis-Mitchell
D
.
Sleep and culture in children with medical conditions.
J Pediatr Psychol
.
2010
;
35
(
9
):
915
926
[PubMed]
98
Barnes
AJ
,
Eisenberg
ME
,
Resnick
MD
.
Suicide and self-injury among children and youth with chronic health conditions.
Pediatrics
.
2010
;
125
(
5
):
889
895
[PubMed]
99
Alriksson-Schmidt
AI
,
Wallander
J
,
Biasini
F
.
Quality of life and resilience in adolescents with a mobility disability.
J Pediatr Psychol
.
2007
;
32
(
3
):
370
379
[PubMed]
100
McLeroy
KR
,
Bibeau
D
,
Steckler
A
,
Glanz
K
.
An ecological perspective on health promotion programs.
Health Educ Q
.
1988
;
15
(
4
):
351
377
[PubMed]
101
Barros
L
,
Gaspar de Matos
M
,
Batista-Foguet
JM
.
Chronic diseases, social context and adolescent health.
Revista Brasileira de Terapias Cognitivas
.
2008
;
4
(
1
):
123
141
102
Rutter
M
.
Psychosocial resilience and protective mechanisms.
Am J Orthopsychiatry
.
1987
;
57
(
3
):
316
331
[PubMed]
103
Sege
R
,
Bethell
C
,
Linkenbach
J
,
Jones
JA
,
Klika
B
,
Pecora
PJ
.
Balancing Adverse Childhood Experiences With HOPE: New Insights Into the Role of Positive Experience on Child and Family Development
.
Boston, MA
:
The Medical Foundation
;
2017
. Available at: www.cssp.org. Accessed November 4, 2017
104
Blackman
JA
,
Conaway
MR
.
Developmental, emotional and behavioral co-morbidities across the chronic health condition spectrum.
J Pediatr Rehabil Med
.
2013
;
6
(
2
):
63
71
[PubMed]
105
Hintermair
M
.
Self-esteem and satisfaction with life of deaf and hard-of-hearing people–a resource-oriented approach to identity work.
J Deaf Stud Deaf Educ
.
2008
;
13
(
2
):
278
300
[PubMed]
106
Pinquart
M
.
Self-esteem of children and adolescents with chronic illness: a meta-analysis.
Child Care Health Dev
.
2013
;
39
(
2
):
153
161
[PubMed]
107
Harter
S
.
The Construction of the Self: A Developmental Perspective
.
New York, NY
:
The Guilford Press
;
1999
108
Hildenbrand
AK
,
Alderfer
MA
,
Deatrick
JA
,
Marsac
ML
.
A mixed methods assessment of coping with pediatric cancer.
J Psychosoc Oncol
.
2014
;
32
(
1
):
37
58
[PubMed]
109
Sansom-Daly
UM
,
Wakefield
CE
.
Distress and adjustment among adolescents and young adults with cancer: an empirical and conceptual review.
Transl Pediatr
.
2013
;
2
(
4
):
167
197
[PubMed]
110
Hall
HR
,
Neely-Barnes
SL
,
Graff
JC
,
Krcek
TE
,
Roberts
RJ
,
Hankins
JS
.
Parental stress in families of children with a genetic disorder/disability and the resiliency model of family stress, adjustment, and adaptation.
Issues Compr Pediatr Nurs
.
2012
;
35
(
1
):
24
44
[PubMed]
111
Bekhet
AK
,
Johnson
NL
,
Zauszniewski
JA
.
Effects on resilience of caregivers of persons with autism spectrum disorder: the role of positive cognitions.
J Am Psychiatr Nurses Assoc
.
2012
;
18
(
6
):
337
344
[PubMed]
112
Johnson
N
,
Frenn
M
,
Feetham
S
,
Simpson
P
.
Autism spectrum disorder: parenting stress, family functioning and health-related quality of life.
Fam Syst Health
.
2011
;
29
(
3
):
232
252
[PubMed]
113
Idalski Carcone
A
,
Ellis
DA
,
Weisz
A
,
Naar-King
S
.
Social support for diabetes illness management: supporting adolescents and caregivers.
J Dev Behav Pediatr
.
2011
;
32
(
8
):
581
590
[PubMed]
114
Ellis
DA
,
King
P
,
Naar-King
S
,
Lam
P
,
Cunningham
PB
,
Secord
E
.
Effects of family treatment on parenting beliefs among caregivers of youth with poorly controlled asthma.
J Dev Behav Pediatr
.
2014
;
35
(
8
):
486
493
[PubMed]
115
Wysocki
T
,
Gavin
L
.
Psychometric properties of a new measure of fathers’ involvement in the management of pediatric chronic diseases.
J Pediatr Psychol
.
2004
;
29
(
3
):
231
240
[PubMed]
116
Morelli
SA
,
Lee
IA
,
Arnn
ME
,
Zaki
J
.
Emotional and instrumental support provision interact to predict well-being.
Emotion
.
2015
;
15
(
4
):
484
493
[PubMed]
117
Council on School Health
.
Role of the school nurse in providing school health services.
Pediatrics
.
2016
;
137
(
6
):
e20160852
118
Perrin
JM
,
Anderson
LE
,
Van Cleave
J
.
The rise in chronic conditions among infants, children, and youth can be met with continued health system innovations.
Health Aff (Millwood)
.
2014
;
33
(
12
):
2099
2105
[PubMed]
119
Cooley
WC
,
Sagerman
PJ
;
American Academy of Pediatrics
;
American Academy of Family Physicians
;
American College of Physicians
;
Transitions Clinical Report Authoring Group
.
Supporting the health care transition from adolescence to adulthood in the medical home.
Pediatrics
.
2011
;
128
(
1
):
182
200
120
Lipkin
PH
,
Okamoto
J
;
Council on Children With Disabilities
;
Council on School Health
.
The individuals with disabilities education act (IDEA) for children with special educational needs.
Pediatrics
.
2015
;
136
(
6
). Available at: www.pediatrics.org/cgi/content/full/136/6/e1650
[PubMed]
121
Adams
RC
,
Tapia
C
;
Council on Children With Disabilities
.
Early intervention, IDEA part C services, and the medical home: collaboration for best practice and best outcomes.
Pediatrics
.
2013
;
132
(
4
). Available at: www.pediatrics.org/cgi/content/full/132/4/e1073
122
Cartwright
JD
;
American Academy of Pediatrics Council on Children With Disabilities
.
Provision of educationally related services for children and adolescents with chronic diseases and disabling conditions.
Pediatrics
.
2007
;
119
(
6
):
1218
1223
[PubMed]
123
Stroul
BA
,
Blau
GM
,
Friedman
RM
.
Updating the System of Care Concept and Philosophy
.
Washington, DC
:
National Technical Assistance Center for Children’s Mental Health, Georgetown University Center for Child and Human Development
;
2010
. Available at: https://gucchdtacenter.georgetown.edu/resources/Call%20Docs/2010Calls/SOC_Brief2010.pdf. Accessed March 7, 2018
124
Association of Maternal and Child Health Programs
;
Lucile Packard Foundation for Children’s Health
.
Standards for Systems of Care for Children and Youth With Special Health Care Needs Version 2.0
.
Washington, DC
:
Association of Maternal and Child Health Programs
;
2017
. Available at: http://www.amchp.org/programsandtopics/CYSHCN/Documents/Standards for Systems of Care for Children and Youth with Special Health Care Needs Version 2.0.pdf. Accessed September 15, 2017
125
Texas System of Care
. A better future for Texas children: the impact of system of care. Available at: www.txsystemofcare.org/wp-content/uploads/2013/02/TXSOC_outcomes.pdf. Accessed March 7, 2018
126
Turchi
RM
,
Berhane
Z
,
Bethell
C
,
Pomponio
A
,
Antonelli
R
,
Minkovitz
CS
.
Care coordination for CSHCN: associations with family-provider relations and family/child outcomes.
Pediatrics
.
2009
;
124
(
suppl 4
):
S428
S434
[PubMed]
127
Little
P
,
Everitt
H
,
Williamson
I
, et al
.
Observational study of effect of patient centredness and positive approach on outcomes of general practice consultations.
BMJ
.
2001
;
323
(
7318
):
908
911
[PubMed]
128
Thom
DH
,
Kravitz
RL
,
Bell
RA
,
Krupat
E
,
Azari
R
.
Patient trust in the physician: relationship to patient requests.
Fam Pract
.
2002
;
19
(
5
):
476
483
[PubMed]
129
Wissow
LS
,
Larson
SM
,
Roter
D
, et al;
SAFE Home Project
.
Longitudinal care improves disclosure of psychosocial information.
Arch Pediatr Adolesc Med
.
2003
;
157
(
5
):
419
424
[PubMed]
130
Wissow
L
,
Anthony
B
,
Brown
J
, et al
.
A common factors approach to improving the mental health capacity of pediatric primary care.
Adm Policy Ment Health
.
2008
;
35
(
4
):
305
318
[PubMed]
131
Katkin
JP
,
Kressly
SJ
,
Edwards
AR
, et al;
Task Force on Pediatric Practice Change
.
Guiding principles for team-based pediatric care.
Pediatrics
.
2017
;
140
(
2
):
e20171489
[PubMed]
132
Kuhlthau
KA
,
Bloom
S
,
Van Cleave
J
, et al
.
Evidence for family-centered care for children with special health care needs: a systematic review.
Acad Pediatr
.
2011
;
11
(
2
):
136
143
[PubMed]
133
Cooley
WC
,
McAllister
JW
,
Sherrieb
K
,
Kuhlthau
K
.
Improved outcomes associated with medical home implementation in pediatric primary care.
Pediatrics
.
2009
;
124
(
1
):
358
364
[PubMed]
134
Arauz Boudreau
AD
,
Van Cleave
JM
,
Gnanasekaran
SK
,
Kurowski
DS
,
Kuhlthau
KA
.
The medical home: relationships with family functioning for children with and without special health care needs.
Acad Pediatr
.
2012
;
12
(
5
):
391
398
[PubMed]
135
Committee on Practice and Ambulatory Medicine
;
Bright Futures Periodicity Schedule Workgroup
.
2017 recommendations for preventive pediatric health care.
Pediatrics
.
2017
;
139
(
4
):
e20170254
[PubMed]
136
Myers
SM
,
Johnson
CP
;
American Academy of Pediatrics Council on Children With Disabilities
.
Management of children with autism spectrum disorders.
Pediatrics
.
2007
;
120
(
5
):
1162
1182
137
Earls
MF
;
Committee on Psychosocial Aspects of Child and Family Health
;
American Academy of Pediatrics
.
Incorporating recognition and management of perinatal and postpartum depression into pediatric practice.
Pediatrics
.
2010
;
126
(
5
):
1032
1039
138
O’Connor
E
,
Rossom
RC
,
Henninger
M
,
Groom
HC
,
Burda
BU
.
Primary care screening for and treatment of depression in pregnant and postpartum women: evidence report and systematic review for the US Preventive Services Task Force.
JAMA
.
2016
;
315
(
4
):
388
406
[PubMed]
139
Forman-Hoffman
V
,
McClure
E
,
McKeeman
J
, et al
.
Screening for major depressive disorder in children and adolescents: a systematic review for the U.S. Preventive Services Task Force.
Ann Intern Med
.
2016
;
164
(
5
):
342
349
[PubMed]
140
Fierman
AH
,
Beck
AF
,
Chung
EK
, et al
.
Redesigning health care practices to address childhood poverty.
Acad Pediatr
.
2016
;
16
(
suppl 3
):
S136
S146
[PubMed]
141
American Academy of Pediatrics
. Mental health screening and assessment tools for primary care. In:
Addressing Mental Health Concerns in Primary Care: A Clinician’s Toolkit
.
Elk Grove Village, IL
:
American Academy of Pediatrics
;
2012
142
Foy
JM
,
Perrin
J
;
American Academy of Pediatrics Task Force on Mental Health
.
Enhancing pediatric mental health care: strategies for preparing a community.
Pediatrics
.
2010
;
125
(
suppl 3
):
S75
S86
143
Council on Children With Disabilities
;
Section on Developmental Behavioral Pediatrics
;
Bright Futures Steering Committee
;
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 [published correction appears in Pediatrics. 2006;118(4):1808–1809].
Pediatrics
.
2006
;
118
(
1
):
405
420
144
Johnson
CP
,
Myers
SM
;
American Academy of Pediatrics Council on Children With Disabilities
.
Identification and evaluation of children with autism spectrum disorders.
Pediatrics
.
2007
;
120
(
5
):
1183
1215
145
Varni
JW
,
Limbers
CA
,
Burwinkle
TM
.
Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales.
Health Qual Life Outcomes
.
2007
;
5
:
43
[PubMed]
146
Modi
AC
,
Pai
AL
,
Hommel
KA
, et al
.
Pediatric self-management: a framework for research, practice, and policy.
Pediatrics
.
2012
;
129
(
2
). Available at: www.pediatrics.org/cgi/content/full/129/2/e473
[PubMed]
147
Lozano
P
,
Houtrow
A
.
Supporting self-management in children and adolescents with complex chronic conditions.
Pediatrics
.
2018
;
141
(
suppl 3
):
S233
S241
[PubMed]
148
Substance Abuse and Mental Health Services Administration and Health Resources and Services Administration Center for Integrated Health Solutions
.
Integrating Behavioral Health and Primary Care for Children and Youth: Concepts and Strategies
.
Washington, DC
:
Substance Abuse and Mental Health Services Administration and Health Resources and Services Administration Center for Integrated Health Solutions
;
2013
. Available at: https://static1.squarespace.com/static/545cdfcce4b0a64725b9f65a/t/553e7ef4e4b09e24c5c935db/1430159092492/13_June_CIHS_Integrated_Care_System_for_Children_final.pdf. Accessed November 11, 2017
149
Tyler
ET
,
Hulkower
RL
,
Kaminski
JW
. Behavioral health integration in pediatric primary care: considerations and opportunities for policymakers, planners, and providers. 2017. Available at: https://www.milbank.org/wp-content/uploads/2017/03/MMF_BHI_REPORT_FINAL.pdf. Accessed November 11, 2017
150
Kuehn
BM
.
Pediatrician-psychiatrist partnerships expand access to mental health care.
JAMA
.
2011
;
306
(
14
):
1531
1533
[PubMed]
151
Fjorback
LO
,
Arendt
M
,
Ornbøl
E
,
Fink
P
,
Walach
H
.
Mindfulness-based stress reduction and mindfulness-based cognitive therapy: a systematic review of randomized controlled trials.
Acta Psychiatr Scand
.
2011
;
124
(
2
):
102
119
[PubMed]
152
Council on Children With Disabilities
;
Medical Home Implementation Project Advisory Committee
.
Patient- and family-centered care coordination: a framework for integrating care for children and youth across multiple systems.
Pediatrics
.
2014
;
133
(
5
). Available at: www.pediatrics.org/cgi/content/full/133/5/e1451
[PubMed]
153
Landon
BE
.
Structuring payments to patient-centered medical homes.
JAMA
.
2014
;
312
(
16
):
1633
1634
[PubMed]
154
Hochstein
M
,
Sareen
H
,
Olson
L
,
O’Connor
K
,
Inkelas
M
,
Halfon
N
.
Periodic Survey #46. A Comparison of Barriers to the Provision of Developmental Assessments and Psychosocial Screenings During Pediatric Health Supervision
.
Elk Grove Village, IL
:
American Academy of Pediatrics
;
2001
. Available at: https://www.aap.org/en-us/professional-resources/Research/Pages/PS46_AcomparisonofBarrierstotheProvisionofDevelopmentalAssessmentsandpsychosocialscreeningsduringpediatrichealthsupervision.aspx. Accessed March 7, 2018
155
Bridgemohan
C
,
Bauer
NS
,
Nielsen
BA
, et al
.
A workforce survey on developmental-behavioral pediatrics.
Pediatrics
.
2018
;
141
(
3
):
e20172164
[PubMed]
156
Tschudy
MM
,
Toomey
SL
,
Cheng
TL
.
Merging systems: integrating home visitation and the family-centered medical home.
Pediatrics
.
2013
;
132
(
suppl 2
):
S74
S81
[PubMed]
157
Jones
K
,
Daley
D
,
Hutchings
J
,
Bywater
T
,
Eames
C
.
Efficacy of the Incredible Years Basic parent training programme as an early intervention for children with conduct problems and ADHD.
Child Care Health Dev
.
2007
;
33
(
6
):
749
756
[PubMed]
158
Sanders
MR
,
Turner
KM
,
Markie-Dadds
C
.
The development and dissemination of the Triple P-Positive Parenting Program: a multilevel, evidence-based system of parenting and family support.
Prev Sci
.
2002
;
3
(
3
):
173
189
[PubMed]
159
Mazzucchelli
TG
,
Sanders
MR
.
Stepping Stones Triple P: A Population Approach to the Promotion of Competent Parenting of Children With Disability
.
Queensland, Australia
:
University of Queensland
;
2012
160
Tellegen
C
.
Outcomes From a Randomised Controlled Trial Evaluating a Brief Parenting Intervention With Parents of Children With an Autism Spectrum Disorder
.
Queensland, Australia
:
University of Queensland
;
2012
161
Shilling
V
,
Morris
C
,
Thompson-Coon
J
,
Ukoumunne
O
,
Rogers
M
,
Logan
S
.
Peer support for parents of children with chronic disabling conditions: a systematic review of quantitative and qualitative studies.
Dev Med Child Neurol
.
2013
;
55
(
7
):
602
609
[PubMed]

Gerri Mattson, MD, MSPH, FAAP

Dennis Z. Kuo, MD, MHS, FAAP

Michael Yogman, MD, FAAP, Chairperson

Rebecca Baum, MD, FAAP

Thresia B. Gambon, MD, FAAP

Arthur Lavin, MD, FAAP

Gerri Mattson, MD, FAAP

Raul Montiel Esparza, MD

Arwa A. Nasir, MBBS, MSc, MPH, FAAP

Lawrence Sagin Wissow, MD, MPH, FAAP

Amy Starin, PhD – National Association of Social Workers

Edward Christophersen, PhD, FAAP – Society of Pediatric Psychology

Sharon Berry, PhD, LP – Society of Pediatric Psychology

Norah L. Johnson, PhD, RN, CPNP-PC – National Association of Pediatric Nurse Practitioners

Abigail B. Schlesinger, MD – American Academy of Child and Adolescent Psychiatry

Aaron Pikcilingis – Family Partnerships Network

Karen Smith

Tamar Magarik Haro

Dennis Z. Kuo, MD, MHS, FAAP, Chairperson

Susan Apkon, MD, FAAP

Timothy J. Brei, MD, FAAP

Lynn F. Davidson, MD, FAAP

Beth Ellen Davis, MD, MPH, FAAP

Kathryn A. Ellerbeck, MD, FAAP

Susan L. Hyman, MD, FAAP

Mary O’Connor Leppert, MD, FAAP

Garey H. Noritz, MD, FAAP

Christopher J. Stille, MD, MPH, FAAP

Larry Yin, MD, MSPH, FAAP

Amy J. Houtrow, MD, PhD, MPH, FAAP

Kenneth W. Norwood Jr, MD, FAAP, Immediate Past Chairperson

Peter J. Smith, MD, MA, FAAP – Section on Developmental and Behavioral Pediatrics

Edwin Simpser, MD, FAAP – Section on Home Care

Georgina Peacock, MD, MPH, FAAP – Centers for Disease Control and Prevention

Marie Mann, MD, MPH, FAAP – Maternal and Child Health Bureau

Cara Coleman, JD, MPH – Family Voices

Alexandra Kuznetsov, RD

Competing Interests

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.