The Mental and Behavioral Health Services Available to Children With Medical Complexity in Complex Care Programs

Abstract

We conducted a cross-sectional survey of complex care programs on behavioral health services provided to children with medical complexity (CMC). Quantitative and qualitative data were analyzed by using convergent mixed methods. Rates of CMC receiving behavioral health services were at or above national averages for the general pediatric population and the most reported concerns were externalizing behaviors. Of 25 programs, 7 (28%) reported integrated care and programs with integrated care found the service improved access and were more likely to screen for caregivers’ mental health. Themes included: 1. Current models of care for pediatric mental and behavioral health limits access for CMC; 2. Collaboration is highly desired by medical teams; 3. Providing mental health for family members of CMC is important. Despite high service use and frequent availability of integrated care, complex care programs still report insufficient access to behavioral health services required to meet the needs of CMC.

Keywords

children with medical complexity complex care programs mental health behavioral health integrated behavioral health

Introduction

Integrated mental and behavioral health is a collaborative model of multidisciplinary care provided by both medical and behavioral health providers in conjunction with patients for whole person care.¹ It has been shown to improve behavioral health service access and outcomes for the child population.^2-4 It has been promoted by national and international pediatric organizations as a solution for unmet mental health needs and incorporated into recommendations for pediatric medical homes.^5,6 However it is not universally available. Prior reports show 35% of primary care pediatric offices in the United States have co-located behavioral health providers, behavioral health providers in same space as medical providers, while only 13% reported fully integrated behavioral health services with only a slight increase in prevalence over the past decade.^7-9 Barriers to implementation vary, and include increased costs, service reimbursement, provider and organizational capacity, and competing clinical needs of persons with chronic medical conditions or who are part of vulnerable populations.^10,11

Children with medical complexity (CMC), who are children with complex chronic medical conditions causing functional impairment and high health care utilization, have more unmet mental health care needs than non-complex peers.^12-14 They are a heterogeneous population, comprising of 1% children, with medical conditions impacting multiple organ systems resulting in developmental delays or disabilities and dependent on medical technology.^15,16 Their unmet mental and behavioral health needs are likely multifactorial due to the interaction of their medical conditions, developmental differences, and medical treatments, although this is not well understood.¹⁵

Recent literature shows CMC have higher rates and different mental and behavioral health (MBH) diagnoses than children without complex conditions.¹⁵ Children with complex chronic conditions also report high rates of specialized MBH care which is harder to access.¹⁷ These factors likely contribute to the high unmet MBH care need for CMC. Integrated behavioral health services for CMC could be an efficient way to meet this unmet need especially as mental health concerns are the most common reason for an outpatient visit in CMC.¹⁸

While integration of MBH in primary care and care of CMC both have had increasing attention, this intersection of integrated MBH care for CMC has not been as well described. One area where this intersection occurs is in outpatient complex care programs. Complex care programs (CCPs) are specialized care settings, typically affiliated with academic medical centers, developed in response to the unique and unmet needs of CMC; they have been shown to improve care for their patients.^19-22 Complex care programs vary in structure and services offered, but have a common goal of improving health outcomes and access to care through care coordination. Complex care programs often serve as the medical home for a child with medical complexity but because of the small size and limited number of CCPs, a small proportion of CMC attend such programs.^20,23,24 Complex care programs can reduce unmet mental health needs of CMC enrolled, though 1 study reported considerable remaining unmet needs for MBH services (42.5%) after enrolling in a CCP.¹⁴

This study was designed to assess the need for mental and behavioral health (MBH) care for CMC as perceived by complex care program (CCP) leaders, to document MBH screening and services in CCPs, and to understand how medical care and MBH currently are integrated among a national sample of pediatric outpatient CCPs.

Methods

Survey Design

This study was a convergent mixed-methods, cross-sectional survey of outpatient complex care programs in the United States. The survey was developed jointly by all authors who are members of the Mental and Behavioral Health Workgroup of the Children and Youth with Special Health Care Network (CYSHCNet), a national research network based primarily at large children’s hospitals.²⁵ The workgroup was a multidisciplinary team representing multiple academic centers and parent partners with lived experience caring for a CMC. The parent partners provided insight into how families perceive MBH integration and input to develop survey questions that are relevant to families on how MBH services are provided.

The survey consisted of 15 primary questions and 54 additional questions within branching logic that were categorical or open-ended responses developed by the workgroup in response to gaps in knowledge identified as part of the CYSHCNet research agenda.²⁶ The survey elicited descriptions of program characteristics including estimated MBH needs of the patients served, information about the extent of MBH integration based on location of services, and services provided by the complex care programs’ staff themselves such as MBH screening and referrals. Descriptions of integration used the SAMHSA-HRSA CIHS’s Standard Framework for Levels of Integrated Healthcare.¹ The levels emphasized service locations and included having an MBH provider located in either shared clinic space, same building (but not in shared clinic space), same healthcare system, and external settings to which referrals are made (eg, community, schools, other healthcare institutions). The series of questions asked about access, communication, diagnostic services, treatment, referral, and coordination at each location. These survey items were descriptive in nature, with sites denoting whether they had access to these professionals.

A pilot survey was completed by 10 complex care providers of different disciplines who, while practicing in complex care programs, would not be the respondent in the final survey. Cognitive interviewing methods were used with select members of the pilot group after they completed the survey to enhance construct validity of survey items.²⁷ The study was approved by the institutional review board at the University of Colorado. The Checklist for Reporting of Survey Studies was followed during data analysis and writing of the manuscript; the checklist was not published during the periods of the survey design and administration.²⁸

Sampling Methods

The target population was pediatric outpatient complex care programs in the United States. In the absence of national standards or certification for pediatric complex care programs, CCPs are self-identified and vary in their structure and services. An accurate count of their number is not available, so the survey sampling frame included all members of CYSHCNet and other known outpatient programs identified from conversations on the Complex Care listserv.²⁹ The listserv is one of the oldest and largest pediatric complex care interest groups; it has been in existence since 2010 and has more than 1000 members. Invitations to participate in the study were made to complex care program leaders in the sample for which an email address was available; there were 50 programs identified by this method. The survey asked potential respondents to self-exclude if they did not have an outpatient service (ie, only provided inpatient consultation) or if the program focused on specific medical problems or organ systems (ie, programs for children with cerebral palsy or a rehabilitation program); the programs could have a range of outpatient service delivery models such as primary care, consultative care, or a mix.

Survey Administration

A web-based survey was sent via email to 50 programs, each email containing a unique link. The survey was carried out in July to August 2021; 2 email reminders were sent to the non-responding programs. The survey was sent to the designated contact for CYSHCNet sites and to the active member on the listserv for other sites, usually the medical director. The survey was completed by the program leader or another knowledgeable staff member at that site. Only 1 response from each program was accepted; if more than 1 response per program was submitted, the program respondents were contacted by email to verify which response was to be used. The survey was brief, taking 15 minutes to answer during pilot testing. Respondents were offered early access to survey results as an incentive for completion of the survey. Responses were confidential but not anonymous for tracking purposes. Surveys were sent and data stored in Qualtrics.³⁰

Statistical Analysis

Descriptive statistics were performed for responses to quantitative questions describing programs, screening patterns, and levels of MBH integration. For questions using ranking, weighted scores were used to determine the top 3 results. Fisher’s exact tests were used to identify significant associations between having a co-located behavioral health provider and specific outcomes such as MBH screening rates; this metric was of particular interest, as typical screening tools have not been developed for CMC, and having a co-located behavioral health provider has shown to improve screening in general pediatric populations.³¹ All analysis was conducted using Stata.³² A statistical significance level of P < .05 was used for all analysis.

Qualitative, open-response survey items were de-identified (ie, hospital, city/state, and program names were redacted), coded, themes analyzed, and quotations extracted using qualitative thematic analysis methods. Dedoose was used for data coding and analysis.³³ After quantitative and qualitative data were analyzed independently, data were integrated and analyzed as per established convergent mixed-methods techniques.³⁴ The parent partners provided interpretation of data from the lens of families and caregivers during the analysis.

Results

All CYSHCNet sites (n = 13, 1 member site has 2 CCPs) and 14 additional programs responded (Figure 1) for a 54% response rate. All respondents were at academic medical centers. Data from 2 programs were removed from analysis due to respondents completing less than 50% of the survey. A total of 25 programs’ data were used in the analysis. The respondents were program medical directors (68%, n = 17), other medical providers (24%, n = 6), and behavioral health providers (8%, n = 2). Programs varied in size from serving <250 patients to >1000 patients (Figure 2).

Figure 1.

Flow diagram of survey respondents.

Figure 2.

Program size of responding CCPs described by number of patients served.

Most programs (88%, n = 22) reported that 10% or more of their patients receive MBH services. Complex care providers reported that the top 3 MBH concerns seen were disruptive behavior (ie, tantrums), anxiety, and self-injurious behavior (ie, head banging) making externalizing behaviors the most common concern.

Mental and Behavioral Health Provider Availability

Forty-four percent (n = 11) of programs reported having a behavioral health provider located in the same clinic space. Social workers were the most frequently identified co-located behavioral health provider (73%, n = 8). Further details of provider availability are in Table 1.

Table 1.

Behavioral Health Provider Availability Based on all Locations to Which CCPs Refer.

	Co-located (n=11)	Same building (n=13)	Same healthcare system (n=18)	Other (n=14)
Psychiatrist	27% (3)	54% (7)	94% (17)	79% (11)
Psychologist	63% (7)	78% (10)	83% (15)	64% (9)
Social Worker (who addresses MBH needs)	73% (8)	46% (6)	55% (10)	43% (6)
Developmental Behavioral Pediatrician	27% (3)	54% (7)	72% (13)	50% (7)
Other provider type	0% (0)	15% (2)	0% (0)	14% (2)

Of the programs with MBH in shared clinical space, 64% (n = 7) had a behavioral health provider accessible at the time of the medical appointment. More than half (n = 6) of programs with a behavioral health provider in a shared clinic space had a provider available every day. Other components of integration are reported in Table 2.

Table 2.

Components of Integrated Care Experienced by Programs Based on Location of Behavioral Health Provider. Programs Could Report Experience at More Than 1 Location of MBH Care.

	Shared clinic space (n=11)	Same building (n=13)	Same healthcare system (n=18)	Other setting (n=14)
Communication
CCP and MBH providers use direct communication to discuss patient needs	100% (11)	46% (6)	56% (10)	36% (5)
CPP receives frequent communication from MBH providers	82% (9)	62% (8)	66% (12)	36% (5)
Diagnosis
MBH providers provide diagnostic clarification of MBH conditions	82% (9)	78% (10)	94% (17)	71% (10)
Treatment
MBH providers initiate or manage psychotropic medications for MBH diagnoses	36% (4)	62% (8)	94% (17)	71% (10)
MBH providers provide psychotherapy	82% (9)	78% (10)	72% (13)	71% (10)
MBH providers follow up MBH needs of patients after initial assessment	91% (10)	85% (11)	100% (18)	100% (14)
Referral & Coordination
MBH providers assist with referrals and provide care coordination for external MBH services as required	64% (7)	69% (9)	100% (18)	93% (14)

Mental and Behavioral Health Services Offered

Sixty-eight percent (n = 17) of programs did not report screening for MBH in patients and 64% (n = 16) did not report screening families for mental health concerns such as depression or anxiety. Compared with programs without a co-located behavioral health provider, programs with a co-located behavioral health provider were more likely to screen families for mental health concerns (64% vs 14%, P = .02). Having a co-located behavioral health provider made it more likely that CMC were screened for MBH concerns though this did not reach significance (55% vs 14%, P = .08).

Eighty percent (n = 20) of programs reported that they could address caregiver mental health concerns, primarily through referrals for mental health services. There was no evidence that addressing caregiver mental health concerns differed by having a co-located behavioral health provider (91% vs 71%, P = .34).

Barriers to Mental and Behavioral Health Care

Programs reported the top 3 barriers to accessing MBH care were: 1. limited experience and expertise addressing patients’ specific MBH needs in the context of their medical complexity; 2. lack of insurance coverage for MBH services; and 3. insufficient time on the part of either the patient/family or the provider.

Qualitative Responses

Of the 25 respondents, 21 provided free text responses describing MBH services provided at each location referred to by CCPs as well as what they would like to improve about MBH services. The responses clustered into the following 3 themes: (1) Current models of care for pediatric MBH limit access for CMC; (2) Collaboration is highly desired by medical teams; and (3) Providing mental health services for family members of CMC is important to CCPs. These themes and associated quotes are illustrated further by representative quotes in Table 3.

Table 3.

Qualitative Themes Developed From Free-Text Responses (With Respondent ID Next to Quote).

1. Current models of pediatric MBH care limits access for CMC

a. Limited access to providers who care for CMC

“There are not enough resources available in this city for children with complex medical problems, and those that are available have a long waitlist. Families end up feeling unheard when they try to get their children services and do not get appointments for months later.” (2)

“The [Developmental Behavioral Pediatrician] in my building is phenomenal once the family has met her, but the waiting period is 18 months to see her.” (1)

“The majority of our patients have neurocognitive delays that are not amenable to typical behavioral therapies and almost always requires psychoactive agents to assist in management.” (5)

“Sometimes it feels like we do a lot of coordination to very very limited services and I wish we simply provided more direct services ourselves.” (14)

b. Insurance or system delivery model limits care

“Feels like a black hole to which we send our patients. Often it is not a great fit due to lack of knowledge/experience on part of community providers with CMC, but sometimes the only option due to county based mental/behavioral health service delivery model.” (16)

“We also have embedded counseling in many schools but generally geared toward children [without functional impairment].” (20)

“Our outpatient child psychiatry unit [does not] accept Medicaid patients.” (17)

2. Collaboration is highly desired by medical teams

“Would love for someone to be integrated with the team more as I think co-location is important but collaboration even more important.” (17)

“Our PCPs use a clinical practice comanagement guideline to consult with psychiatry to co-manage medications for behavioral health in complex care. This cuts down on the time to be seen initially and allows for the PCP in complex care to manage medicines with psychiatry’s oversight.” (9)

“[It is] difficult to communicate with [community MBH providers] sometimes because not in same system or not aware of all medical conditions/needs.” (15)

3. Providing mental health for family members of CMC is important to CCPs.

“I wish we had dedicated therapists to provide therapy, both for the patients and for their parents.” (19)

“Integrate into our care team visits for patients, siblings and caregivers!” (6)

“We would love to offer systematically service for all parents/caregivers.” (12)

Respondents described multiple factors that limit access to pediatric MBH for CMCs. These factors included limited access to behavioral health providers who cared for CMC (long wait lists, not enough providers), typical care options did not fit the needs of CMC, and behavioral health providers being unwilling to provide care for CMC (including integrated/co-located providers). This latter statement is best represented by 1 respondent: “We have an MBH provider within our primary care clinic space but she really doesn’t see patients with medical complexity so it is not helpful to my patients.” Respondents reported sometimes using atypical behavioral health providers, such as neurologists, to address patients’ MBH needs. In addition, inadequate MBH delivery models (such as county-based MBH services, school-based MBH services, and limited availability of specialized MBH required for this population) and limited insurance benefits were reported barriers.

Three CCPs reported that having integrated MBH care was a facilitator to access. These 3 programs were independent CCPs not housed within a larger general pediatric primary care practice. “[Primary Care Providers] in our clinic can identify MBH service needed within the consult and will inform the MBH provider to determine whether they can see the patient within the same appointment, rather than rescheduling for another day” represents the success of integrated MBH specific for CMCs into CCPs.

Discussion

Our study found that the proportion of patients seen within our sample of complex care programs who receive mental and behavioral health care is equal to or higher than reported national pediatric rates, yet substantial unmet needs for MBH services persist even within these specialized programs due to unique considerations in MBH care of CMC. This is the first study to describe the factors contributing to persistent unmet MBH needs of CMC despite high access to services.

Most CCPs in our sample reported that 10% or more of their patients use any behavioral health services. This is higher than the 9.6-10.1% of the general pediatric population which receives behavioral health services and is in agreement with prior literature reporting higher use of behavioral health services by CMC.^35-37 Despite this level of service use, respondents still expressed unmet MBH needs and identified barriers to care specific to their patients having medical complexity. Respondents identified integrated, collaborative behavioral health providers as a potential solution to this unmet need. Three programs reported success in meeting the needs of CMC with this model.

Externalizing behavioral problems and anxiety were the most common MBH needs seen by CCPs contrasting with attention deficit hyperactivity disorder and anxiety which are the most frequent MBH diagnoses in the general pediatric population.²⁹ One study looking at mental health diagnoses in CMC reported stress and trauma were the most common diagnoses, with anxiety and disruptive disorders high in prevalence as well.¹⁵ While our survey asked about trauma, it was not ranked as a common diagnosis. This may be in part due to differences between concerns voiced by CMC and families who attend a CCP as compared with diagnoses from claims data, or differences between concerns of CMC who attend a CCP compared with those who do not. More importantly, our study agrees with prior literature that MBH needs in CMC are different than the general pediatric population which could lead to unmet need. In addition, children in the general population with behavioral disorders are less likely to receive treatment than other mental health disorders, which could be another reason for unmet needs among CMC which report high rates of behavior disorders.^35,38

Our respondents reported the largest barrier to appropriate MBH care was finding a provider able to address MBH needs that occur together with complex medical conditions. Programs report access was often limited by insurance, but this was not the only factor. Some respondents reported barriers to care due to MBH providers unwilling to see CMC, even when behavioral health providers were co-located or integrated. Forty-four percent of the CCPs in our study reported having a co-located behavioral health provider and 28% reported having an integrated behavioral health provider.⁷ The most common co-located provider was a social worker. Mental and behavioral health services provided by a psychologist or psychiatrist within a CCP were less common than in other settings. Importantly, integrated providers without experience or education on the needs of CMC were not supportive in meeting the MBH needs of CMC. Our findings shed light on the substantial unmet MBH need of CMC, even within specialized complex care programs, and agree with reports that unmet needs of CMC are often due to the complexity of their care.^13,14 Further understanding on behavioral health provider education and other supports including to address MBH needs of CMC is critical to filling this unmet need.

Complex care programs with integrated MBH care specifically for CMC reported easier access to MBH services. This was likely facilitated by bi-directional communication between behavioral health and medical clinicians that consider the interaction between the child’s complex medical needs and their unique MBH concerns. Direct and frequent provider-to-provider communication was reported more often with a co-located behavioral health provider. Respondents desired integrated and collaborative care even more than just co-located care. Understanding factors that facilitate collaboration, in addition to having integrated behavioral health providers who are specifically able to address the MBH needs of CMC, is critical to develop this high-quality model of care.

There is growing evidence that parents and other caregivers of CMC have poor mental health compared with peers.^39-41 Having a co-located MBH provider made it more likely that caregivers were screened for mental health concerns in our study. More importantly, 80% of programs reported being able to help caregivers with mental health concerns; being able to assist family and caregivers regardless of co-located mental health provider status implies that CCPs are recognizing the importance of caregiver mental health to their patient’s wellbeing. Though family and caregiver MBH support was largely addressed through referrals and not through direct MBH care in the CCPs, respondents recognized that direct care would be preferable and that it was a service they would like to include in their clinics. Prior studies support that CCPs reduce unmet family mental health needs.¹⁴ Models able to adequately support mental and behavioral health of the whole family of a child with medical complexity could impact whole family wellbeing.

Limitations

Our sample, made necessary by the lack of a complete available list of CCPs, and resulting small sample size made statistical inferences difficult and limited the power to show important differences during our analysis. The sample size was sufficient to reach thematic saturation in our qualitative analysis. Our response rate was in no doubt affected by us asking programs to self-exclude. Based on a review of programs who did not respond to the survey, at least 7 were specialty or inpatient CCPs.

In addition, our results are reflective of the MBH needs of CMC receiving care through CCPs at academic medical centers. Integrating MBH has been reported as more successful in larger practices with more resources, such as academic medical centers.^9,42 Therefore, our data should only represent the access to integrated MBH for CMC receiving care through CCPs and not CMC generally. We did not take into consideration the perceptions of patients or their families on MBH care through CCPs; the experience of patients and their families is being investigated by this workgroup in another study.

Conclusion

Children with medical complexity cared for by complex care programs continue to experience multiple barriers to mental and behavioral health care despite greater rates of MBH service use and access to integrated behavioral health providers than the general pediatric population. The unmet MBH needs of CMC are impacted by multiple factors including the unique MBH problems created by their medical conditions, the difficulty identifying mental health professionals willing or able to care for this population of children and their families, insurance limitations, and the caregiving challenges caring for CMC create. Integrating behavioral health providers with experience caring for CMC into CCPs represents 1 way to address MBH access and increase mental health screening rates for caregivers of CMC.

Author Contributions

Kristina E. Malik: Dr Malik conceptualized and help with design of the study and survey, piloted the survey, collected and analyzed the data, interpreted the data, and drafted the initial manuscript.

Charlene Shelton: Dr Shelton conceptualized and designed the study and survey, built and distributed the survey, collected and analyzed the data, and reviewed and revised the manuscript.

Amber Marin: Ms Marin helped with design of the study and survey, reviewed the data, and reviewed and revised the manuscript.

Verenea J. Serrano: Dr Serrano helped with the design of the study and survey, reviewed the data, and reviewed and revised the manuscript.

Bruno Anthony: Dr Anthony helped with the design of the study and survey, reviewed the data, and reviewed and revised the manuscript.

Edward L. Schor: Dr Schor helped with the design of the study and survey, reviewed the data, and reviewed and revised the manuscript.

Ricardo Mosquera: Dr Mosquera helped with the design of the study and survey and reviewed and revised the manuscript.

Carlos Lerner: Dr Lerner helped with the design of the study and survey, reviewed the data, and reviewed and revised the manuscript.

Christopher J. Stille: Dr Stille conceptualized and designed the study, interpreted the data, and reviewed and revised the manuscript.

All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

Footnotes

ORCID iDs

Kristina E. Malik

Edward L. Schor

Carlos Lerner

Ethical Considerations

Our study received an exempt status by the Colorado Multiple Institutional Review Board June 2021 with continuous renewal.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under UA6MC31101 Children with Special Health Care Needs Research Network. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS, or the U.S. Government.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability Statement

Survey response data are available on request to the corresponding author.

References

SAMHSA/HRSA Center for Integrated Health Solutions. CIHS’ standard framework for levels of integrated healthcare. Accessed August 22, 2025. https://www.thenationalcouncil.org/wp-content/uploads/2020/01/CIHS_Framework_Final_charts.pdf?daf=375ateTbd56.

Walter

Vernacchio

Trudell

, et al. Five-year outcomes of behavioral health integration in pediatric primary care. Pediatrics. 2019;144(1):e20183243. doi:10.1542/peds.2018-3243.

Asarnow

Rozenman

Wiblin

Zeltzer

Integrated medical-behavioral care compared with usual primary care for child and adolescent behavioral health: a meta-analysis. JAMA Pediatr. 2015;169(10):929-937. doi:10.1001/jamapediatrics.2015.1141.

American Academy of Child and Adolescent Psychiatry (AACAP) Committee on Collaborative and Integrated Care and AACAP Committee on Quality Issues; American Academy of Child and Adolescent Psychiatry (AACAP) Committee on Collaborative and Integrated Care and AACAP Committee on Quality Issues. Clinical update: collaborative mental health care for children and adolescents in pediatric primary care. J Am Acad Child Adolesc Psychiatry. 2023;62(2):91-119. doi:10.1016/j.jaac.2022.06.007.

Unützer

Carlo

Collins

PY.

Leveraging collaborative care to improve access to mental health care on a global scale. World Psychiatry. 2020;19(1):36-37. doi:10.1002/wps.20696.

Perrin

Flanagan

Katkin

Barabell

Price

; Committee on Child Health Financing. The unique value proposition of pediatric health care. Pediatrics. 2023;151(2):e2022060681. doi:10.1542/peds.2022-060681.

Bunik

Talmi

Stafford

, et al. Integrating mental health services in primary care continuity clinics: a national CORNET study. Acad Pediatr. 2013;13(6):551-557. doi:10.1016/j.acap.2013.07.002.

McCue Horwitz

Storfer-Isser

Kerker

, et al. Do on-site mental health professionals change pediatricians’ responses to children’s mental health problems. Acad Pediatr. 2016;16(7):676-683. doi:10.1016/j.acap.2016.03.010.

Richman

Lombardi

Zerden

LD.

Mapping colocation: using national provider identified data to assess primary care and behavioral health colocation. Fam Syst Health. 2020;38(1):16-23. doi:10.1037/fsh0000465.

10.

Grazier

Smiley

Bondalapati

KS.

Overcoming barriers to integrating behavioral health and primary care services. J Prim Care Community Health. 2016;7(4):242-248. doi:10.1177/2150131916656455.

11.

Grazier

Smith

Song

Smiley

ML.

Integration of depression and primary care: barriers to adoption. J Prim Care Community Health. 2014;5(1):67-73. doi:10.1177/2150131913491290.

12.

Unmet mental health care needs in U.S. children with medical complexity, 2005-2010. J Psychosom Res. 2016;82:1-3. doi:10.1016/j.jpsychores.2015.12.007.

13.

Kuo

Goudie

Cohen

, et al. Inequities in health care needs for children with medical complexity. Health Aff (Millwood). 2014;33(12):2190-2198. doi:10.1377/hlthaff.2014.0273.

14.

Kuo

Berry

Glader

Morin

Johaningsmeir

Gordon

Health services and health care needs fulfilled by structured clinical programs for children with medical complexity. J Pediatr. 2016;169:291-296. doi:10.1016/j.jpeds.2015.10.010.

15.

Leyenaar

Arakelyan

Schaefer

, et al. Neurodevelopmental and mental health conditions in children with medical complexity. Pediatrics. 2024;154(3):e2024065650. doi:10.1542/peds.2024-065650.

16.

Leyenaar

Schaefer

Freyleue

, et al. Prevalence of children with medical complexity and associations with health care utilization and in-hospital mortality. JAMA Pediatr. 2022;176(6):e220687. doi:10.1001/jamapediatrics.2022.0687.

17.

Ramgopal

Goodman

Kan

Smith

Foster

CC.

Children with medical complexity and mental and behavioral disorders in the emergency department. Hosp Pediatr. 2023;13(1):9-16. doi:10.1542/hpeds.2022-006835.

18.

Kuo

Melguizo-Castro

Goudie

Nick

Robbins

Casey

PH.

Variation in child health care utilization by medical complexity. Matern Child Health J. 2015;19(1):40-48. doi:10.1007/s10995-014-1493-0.

19.

Hogan

Galligan

Stack

, et al. A tertiary care-based complex care program: improving care for children with medical complexity. Med Care. 2020;58(11):958-962. doi:10.1097/MLR.0000000000001388.

20.

Barreda

Ehlenbach

Nackers

, et al. Complex care program enrollment and change in ED and hospital visits from medical device complications. Pediatr Qual Saf. 2021;6(5):e450. doi:10.1097/pq9.0000000000000450.

21.

Sander

Albert

Okeke

, et al. Building a Medicaid ambulatory complex care program within an urban medical home. Popul Health Manag. 2018;21(6):446-453. doi:10.1089/pop.2017.0200.

22.

Mosquera

Avritscher

Samuels

, et al. Effect of an enhanced medical home on serious illness and cost of care among high-risk children with chronic illness: a randomized clinical trial. JAMA. 2014;312(24):2640-2648. doi:10.1001/jama.2014.16419.

23.

Kelly

Golnik

Cady

A medical home center: specializing in the care of children with special health care needs of high intensity. Matern Child Health J. 2008;12(5):633-640. doi:10.1007/s10995-007-0271-7.

24.

Complex Care Journal. Accessed August 22, 2025. complexcarejournal.org.

25.

Children and youth with special health care needs national research network. Maternal and Child Health Bureau, Health Resources and Services Administration (HRSA). Accessed August 22, 2025. https://cyshcnet.org/.

26.

Coller

Berry

Kuo

, et al. Health system research priorities for children and youth with special health care needs. Pediatrics. 2020;145(3):e20190673. doi:10.1542/peds.2019-0673.

27.

Willis

GB.

Cognitive Interviewing: A Tool for Improving Questionnaire Design. London: Sage Publications; 2005.

28.

Sharma

Minh Duc

Luu Lam Thang

, et al. A consensus-based checklist for reporting of survey studies (CROSS). J Gen Intern Med. 2021;36(10):3179-3187. doi:10.1007/s11606-021-06737-1.

29.

Complex Care Listserv. Accessed August 22, 2025. http://www.complexcarehome.com/.

30.

Qualtrics. Version: 2021-2022. Accessed August 22, 2025. https://www.qualtrics.com.

31.

Hacker

Myagmarjav

Harris

Suglia

Weidner

Link

Mental health screening in pediatric practice: factors related to positive screens and the contribution of parental/personal concern. Pediatrics. 2006;118(5):1896-1906. doi:10.1542/peds.2006-0026.

32.

StataCorp. Stata Statistical Software: Release 17. College Station, TX: StataCorp LLC; 2021.

33.

Dedoose. Version 9 Cloud Application for Managing Analyzing Presenting Qualitative Mixed Method Research Data. Los Angeles, CA: SocioCultural Research Consultants, LLC; 2022. Accessed August 22, 2025. www.dedoose.com.

34.

Fetters Michael

. The Mixed Methods Research Workbook: Activities for Designing, Implementing, and Publishing Projects. London: Sage Publications Inc; 2020.

35.

Bitsko

Claussen

Lichtstein

, et al. Surveillance of children’s mental health—United States, 2013–2019. MMWR. 2022;71(suppl 2):1-42.

36.

Witt

Kasper

Riley

AW.

Mental health services use among school-aged children with disabilities: the role of sociodemographics, functional limitations, family burdens, and care coordination. Health Serv Res. 2003;38(6, pt 1):1441-1466. doi:10.1111/j.1475-6773.2003.00187.x.

37.

Rast

Roux

Connor

, et al. The medical home and mental health services in children and youth with special health care needs. Matern Child Health J. 2023;27(6):1097-1106. doi:10.1007/s10995-023-03652-1.

38.

Ghandour

Sherman

Vladutiu

, et al. Prevalence and treatment of depression, anxiety, and conduct problems in US children. J Pediatr. 2019;206:256-267. doi:10.1016/j.jpeds.2018.09.021.

39.

Bayer

Wang

Kuo

Halterman

A national mental health profile of parents of children with medical complexity. Pediatrics. 2021;148(2):e2020023358. doi:10.1542/peds.2020-023358.

40.

Cohn

Pechlivanoglou

Lee

, et al. Health outcomes of parents of children with chronic illness: a systematic review and meta-analysis. J Pediatr. 2020;218:166-177. doi:10.1016/j.jpeds.2019.10.068.

41.

Bayer

Beach

Kuo

Houtrow

AJ.

A national profile of families and caregivers of children with disabilities and/or medical complexity. Acad Pediatr. 2022;22(8):1489-1498. doi:10.1016/j.acap.2022.08.004.

42.

Zhu

Chung

Giliberti

Integrated behavioral health care in pediatric practices: the dollars don’t add up. Health Aff Sch. 2025;3(4):qxaf046. doi:10.1093/haschl/qxaf046.