Improving Access to Mental Health Care Among Children Who Receive Subspecialist Care

Abstract

Objectives:

Children and Youth with Special Healthcare Needs (CYSHCN) have high rates of unmet health care need, particularly mental health. To increase access to mental health care, policymakers support pediatric subspecialists providing mental health care. Yet it is unclear how great the need for this role might be. This study described mental health care needs among CYSHCN who needed pediatric subspeciality care, and rates at which needs go unmet.

Methods:

We conducted a retrospective cohort study of 20,335 CYSHCN who needed subspecialist care from 2016 to 2021 using pooled National Survey of Children’s Health data. Analysis described rates of mental health care need and unmet need.

Results:

Forty percent (N=8,538) of CYSHCN who needed subspecialist care had mental health care needs. CYSHCN receiving care from a specialist had a significantly lower unmet need for mental health care, compared to those who did not receive specialist care (12.5% vs. 43.5%). Receiving subspecialist care was associated with a 24-percentage point decrease in unmet mental health need.

Conclusions for Practice:

CYSHCN who receive subspecialist care have high rates of mental health care need, most need is met. Future work should explore strategies to support subspecialists in the provision of holistic, physical, and mental, health care without assuming roles as mental health care providers.

Children in the United States have increasing health care need associated with rising rates of chronic illness and mental health conditions. More than one-third of children have a chronic illness, and many require care from pediatric subspecialists for episodic or long-term management (The National Academies of Sciences, Engineering and Medicine [NASEM], 2023) Collectively these children, children and youth with special health care needs (CYSHCN), “have or are at 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 by children generally” (McPherson et al., 1998). Children with chronic medical conditions frequently have co-occurring mental health conditions (Glassgow et al., 2020). Recent estimates indicate more than one-third of children with chronic medical conditions have a mental health condition, with increasing prevalence as medical complexity increases (Leyenaar et al., 2024). Yet, many CYSHCN go without necessary mental health care (Gigli & Graaf, 2023; Health Resources Services Administration [HRSA], 2022). As a result, their chronic illnesses are often more difficult to manage, and long-term health outcomes are worse for children who do not receive needed mental health care services (Bright et al., 2016).

Given the prevalence of co-occurring physical and mental health care needs in CYSHCN, to increase access to mental health care, the role of pediatric subspecialists in meeting physical and mental health care needs has taken greater prominence (NASEM, 2023). Accrediting bodies and professional societies endorse a greater role for pediatric subspecialists in meeting pediatric mental health care need (Accreditation Council for Graduate Medical Education [ACGME], 2023; Foy et al., 2019; Reardon et al., 2020). Educational changes are expected to increase the knowledge of pediatric medical subspecialists in providing mental health care (ACGME, 2023). However, it is unclear how these changes will address unmet mental health needs, which types of mental health care services pediatric subspecialists can most effectively provide, or if the subspecialists may be best equipped not to provide mental health care but, to connect CYSHCN to mental health specialists (Reardon et al., 2020).

Given that many CYSHCN already access the health care system through pediatric subspecialist care (NASEM, 2023), it may be possible that they already have access to mental health care as well. However, the extent to which CYSHCN who receive subspecialist care face barriers to accessing mental health care has yet to be documented. As a result, the extent to which pediatric subspecialists might be called upon to provide mental health care in conjunction with specialty care is unclear. To address these knowledge gaps, the purpose of this study is to 1) describe mental health care needs among CYSHCN who need pediatric subspeciality care and 2) identify the rates at which mental health care needs go unmet among CYSHCN who need pediatric subspeciality care, and 3) assess the association between receipt of subspecialist care and unmet mental health need.

Methods

This study used pooled data from the publicly available National Survey of Children’s Health (NSCH) from 2016 through 2021. The NSCH is an annual, population-based survey conducted by the US Census Bureau for the US Department of Health and Human Services, Health Resources and Services Administration, and Maternal and Child Health Bureau. The data are weighted and enable state and nationally representative estimates indicative of the population of non-institutionalized, housed children, ages 0 through 17 years old, in the United States. Data include parent reported indicators of children’s health and well-being, families’ experiences of health care, and qualities of children’s social and physical environment. Details about the survey are provided elsewhere (Ghandour et al., 2018). This analysis focused on a subsample of CYSHCN within the NSCH, identified using the Child with Special Health Care Needs screening tool (Bethell et al., 2015).

Key Variables

The need and unmet need for specialist and mental health care variables assessed the subjective, caregiver-reported, perception that healthcare was needed and that the need for care went unmet (Allin et al., 2010).

Specialist Care.

The need for specialist care was constructed through responses to the survey question, “During the past 12 months, did this child see a specialist other than a mental health professional? Specialists are doctors like surgeons, heart doctors, allergy doctors, skin doctors, and others who specialize in one area of health care.” CYSHCN for whom caregivers responded “Yes” or “No but this child needed to see a specialist,” were included in the sample as having need for specialist care. CYSHCN for whom caregivers responded “Yes” were coded as having received care from a specialist (1), while those whose caregiver responded “No but this child needed to see a specialist” were coded as not receiving specialist care (0).

Met and Unmet Need for Mental Health Care.

This outcome was defined using the NSCH question, “During the past 12 months, has this child received any treatment or counseling from a mental health professional? Mental health professionals include psychiatrists, psychologists, psychiatric nurses, and clinical social workers.” Caregivers responding “Yes” were coded as having a need for mental health care (mental health need = 1) and no unmet need (unmet mental health need = 0). Caregivers responding “No, but this child needed to see a mental health professional” were coded as having a mental health need (mental health need = 1) and an unmet mental health need (unmet mental health need = 1). Observations in which caregivers responded “No, this child did not need to see a mental health professional,” were coded as having no mental health need (mental health need = 0) and no unmet mental health need (unmet mental health need = 0).

Covariables.

The Andersen Behavioral Model for Health Care Utilization provided the theoretical framework to examine mental health care utilization (Andersen, 1995). We examined individual characteristics of CYSHCN in comparing met and unmet needs for mental health care. Specifically, predisposing characteristics included CYSHCNs’ sex, age, and race and ethnicity. Enabling factors included family resources: caregiver education level (high school or less, more than high school), household language (English or not English), household income (below 200% FPL or above 200% FPL), family structure (single caregiver or other family type, two caregiver family), continuity of child’s health insurance (continuously insured for last 12 months or not), type of child’s health insurance (private only, public only, both public and private, or not insured) and parent report of having a usual care provider (yes or no). Need factors included having impairments in daily functioning (daily activities are never or minimally affected; daily activities are moderately or consistently affected), and whether the child was identified as having an emotional, behavioral, or developmental problem (EBDP) on the CYSHCN screener (yes or no).

Analysis

The study sample included all CYSHCN whose caregiver reported a need for specialist care in the past twelve months (n=20,335). For all CYSHCN who needed subspecialist care, we conducted bivariate analysis to assess rates of need and unmet need for mental health care, stratified by receipt of specialist care. Chi-squares estimated the significance of differences across individual characteristics for both mental health care need and unmet mental health care need. Additional bivariate analysis assessed sample sizes and proportions for covariates, stratifying the sample by receipt of specialist care. Multivariable logistic regression assessed associations between receipt of specialty care and unmet mental health need for CYSHCN with need for both specialist care and mental health care. Post estimation command “dy/dx*” generated average marginal effects (AME) for each predictor and covariate.

Analyses were conducted in STATA MP 16.1 and accounted for the survey’s complex sampling design and weighting, allowing for national estimates of outcomes. Less than 5% of the national sample was missing non-imputed data for individual characteristics or outcome variables. Up to 10% of observations with missingness can be dropped without compromising the national representativeness of the data, its weighing, and analytic outcomes and list-wise deletion was used to address missing data in covariates (Langkamp et al., 2010).

Results

In the pooled sample of CYSCHN who needed specialist care (n = 20,335), most (n = 18,581, 87.3%) received specialist care, while only 12.7% (n = 1,754) had unmet need for specialist care (see Table 1). Overall, two in five (n = 8,538, 43.9%) of these CYSHCN needed mental health care (see Table 1). CYSHCN receiving care from a specialist had a significantly lower unmet need for mental health care, compared to those who did not receive specialist care (12.5% vs. 43.5%). In the adjusted model (see Table 2), receipt of specialty care was associated with a 24 percentage point reduction in unmet need for mental health care (p < 0.001, 95% confidence intervals = −0.30, −0.19).

Table 1.

CYSHCNs Need and Unmet Need for Mental Health Care, Stratified by use of Subspecialist Care

	Received Care from a Subspecialist (n=18,581) (87.3%*)		Unmet Need for Subspecialist Care (n=1,754) (12.7%*)			Total
	n	%	n	%	p	n	%
Need for Mental Health Care (last 12 months)
Needed Mental Health Care	7,331	40.1%	1,207	69.7%	<.001	8,538	43.9%
Did Not Need Mental Health Care	11,250	59.9%	547	30.3%		11,797	56.1%
Unmet Need for Mental Health Care (last 12 months)
Received Treatment from a Mental Health Professional	6,556	87.5%	718	56.5%	<.001	7,274	83.4%
Did Not Receive Treatment, but Needed it	775	12.5%	489	43.5%		1,264	16.6%

Data Source: National Survey of Children’s Health (NSCH), 2016–2021

^*Weighted Proportions

Abbreviation: CYSHCN, Children and Youth with Special Health Care Needs

Table 2.

Characteristics of Children and Youth with Special Health Care Needs with need for Subspecialist Care and Mental Health Care (n= 8,538)

	Unmet Need for Subspecialist Care		Received care from a Subspecialist			Multivariable Regression: The Association of Receipt of Subspecialist Care with Unmet Mental Health Need, Among CYSHCN with Need for Specialist Care and Mental Health Care (n=8,195*)
	n	%	n	%	p	AME	SE	t	p	95% CI
CYSHCN Who Received Specialist Care						−0.24	0.03	−9.25	<0.001	−0.30	−0.19
Child Sex					0.673
Male	709	53.0%	3,796	54.5%
Female	498	47.0%	3,535	45.5%		0.04	0.02	1.73	0.08	0.00	0.08
Child Race/Ethnicity					<.001
White, non-Hispanic	696	37.7%	5,262	56.9%
Black, non-Hispanic	147	26.1%	471	15.2%		0.05	0.03	1.44	0.15	−0.02	0.12
Hispanic	206	28.8%	807	19.6%		−0.05	0.03	−1.38	0.17	−0.11	0.02
Other/Multiracial	158	7.4%	791	8.3%		0.03	0.04	0.82	0.41	−0.04	0.10
Child Age					0.023
3–5 years	111	10.5%	509	9.0%
6–11 years	434	41.3%	2,093	33.5%		−0.11	0.04	−2.74	0.01	−0.20	−0.03
12–17 years	662	48.1%	4,729	57.5%		−0.17	0.04	−4.06	<0.001	−0.25	−0.09
Household Income					<.001
Below 200% FPL	589	61.9%	2,230	44.6%
Above 200% FPL	618	38.1%	5,101	55.5%		−0.03	0.02	−1.21	0.23	−0.07	0.02
Insurance Type					<.001
Private	505	33.4%	4,267	46.1%
Public	483	45.6%	2,047	40.7%		−0.01	0.03	−0.38	0.70	−0.06	0.04
Public and Private	94	11.1%	742	9.9%		0.01	0.04	0.34	0.73	−0.07	0.09
Not Insured	84	9.9%	189	3.3%		0.00	0.08	0.05	0.96	−0.15	0.16
Insured Continuously for prior 12 months					<.001
No	145	14.5%	314	5.9%
Yes	1,052	85.5%	6,992	94.1%		−0.03	0.05	−0.63	0.53	−0.13	0.07
Source of Usual Care					<.001
No	114	13.3%	175	3.9%
Yes	1088	86.7%	7,134	96.1%		−0.07	0.05	−1.33	0.19	−0.17	0.03
Child has an ongoing Emotional, Behavioral or Developmental
Problem					0.49
No	207	17.5%	1,589	19.7%
Yes	1,000	82.5%	5,742	80.3%		−0.10	0.03	−3.20	<0.001	−0.15	−0.04
Impairment in Daily Activities					0.612
Daily activities not affected	295	24.2%	1,710	22.8%
Daily activities moderately or greatly affected	912	75.8%	5,621	77.2%		−0.01	0.02	−0.57	0.57	−0.06	0.03
Parent Education Level					<.001
Less than High School	65	14.8%	153	7.0%
High School	230	21.5%	849	20.2%		0.04	0.05	0.83	0.41	−0.06	0.14
More than High School	902	63.7%	6,293	72.8%		0.03	0.05	0.55	0.59	−0.07	0.12
Family Structure					<.001
Single parent or other structure	503	35.0%	4,376	52.5%
Two parent family	678	65.0%	2,860	47.5%		0.04	0.02	1.59	0.11	−0.01	0.08
Household Language					0.017
English	1,115	88.4%	7,063	93.5%
Not English	83	11.6%	227	6.5%		0.15	0.05	2.91	0.004	0.05	0.25
Year					0.091
2016	234	14.1%	1,606	17.7%		0.00	0.01	−0.56	0.57	−0.01	0.01
2017	128	16.5%	701	15.8%
2018	129	11.6%	994	17.3%
2019	163	20.0%	1,053	18.3%
2020	246	18.9%	1,468	16.0%
2021	307	19.0%	1,509	14.9%

Data Source: National Survey of Children’s Health (NSCH), 2016–2021

^**Sample size after listwise deletion for missing values on covariates

Abbreviation: CYSHCN, Children and Youth with Special Health Care Needs

Discussion

The need for pediatric mental health care is growing in the United States and CYSHCN experience significant rates of unmet need for mental health care (HRSA, 2022; Lebrun-Harris et al., 2022). Given that CYSHCN often access the healthcare system to receive medical care from pediatric subspecialists (NASEM, 2023), this study analyzed data from the NSCH to understand the need for mental health care among the population of CYSHCN who need subspecialist care. We compared rates of need and unmet need for mental health care between those who have access to subspecialist care with those who needed subspecialist care but did not receive it. Study results have practice and policy implications for improving access to pediatric mental health care.

Study findings suggest CYSHCN who needed subspecialist care commonly have mental health care need, at a similar rate to the mental health care need in the overall population of CYSHCN (Rast et al., 2023). Unmet need in CYSHCN was less than the general child population (almost 50%) (Whitney & Peterson, 2019). Importantly, receipt of subspecialist care was associated with statistically significantly lower rates of unmet mental health care need in CYSHCN compared to those who had unmet need for subspecialist care, suggesting that access to subspeciality care has some correlation with receipt of mental health care. Further, as mental health care needs increased for the general child population in the U.S (Lebrun-Harris et al., 2022), rates of unmet mental health care need among CYSCHN who received specialist care are comparable with prior examination of unmet mental health care need for children with medical complexity (An, 2016; Rast et al., 2023). This suggests CYSCHN who received specialist care are not facing increasing difficulty accessing mental health care, even as demand for pediatric mental health care increases nationwide. However, among the population of CYSHCN who had unmet need for specialist care, the unmet need for mental health care was significantly higher, suggesting need for care may result from more systemic barriers to care (NASEM, 2023). Future research should focus on identifying this population of CYSHCN to understand their barriers to care and develop strategies to support their access to needed health care.

Access to pediatric subspecialists for medical care appears to confer benefits to those who also have mental health care needs. It may be that the pediatric subspecialists assume a role in meeting the holistic, physical, and mental healthcare needs of CYSHCN, as study findings suggest that the mental health care needs of CYSHCN who receive subspecialist care are largely being met. In this instance, pediatric subspecialists may moderate the need for CYHSCN to receive mental health care from mental health care professionals. Yet, their role may also be one of care coordination and referral, effectively connecting CYSHCN who have mental health care needs with mental health providers (Foy et al., 2019).

Future research is needed to characterize pediatric subspecialists' role in providing mental health care to CYSHCN, given that some accrediting and professional organizations promote increased mental health training for pediatric subspecialists to equip them to provide mental health care directly (ACGME, 2023; Foy et al., 2019; Reardon et al., 2020). Subspecialists may be most effective in addressing mental health needs of CYSHCN through screening and appropriate referral for mental health care, not through an increased role in the provision of mental health care directly (O’Connell et al., 2009). Identifying need and referral to mental health care is within the scope of practice of pediatric subspecialists, who are often pediatricians. Particularly in cases where subspecialists assume frequent, long-term care for CYSHCN, inclusion of routine screening for mental health care need and appropriate referral to mental health specialists for care is consistent with practice in primary care (McLellan et al., 2022; O’Connell et al., 2009). Pediatric subspecialists can adopt this strategy to identify CYSHCN with mental health care need and address unmet need more consistently. Additionally, it should be considered an essential component of providing holistic pediatric subspecialty care.

Beyond screening and referral, future research is needed to elucidate models of care and scopes of practice that make best use of the knowledge and skills of both mental health specialists and pediatric subspecialists when addressing CYSHCN mental health care needs (NASEM, 2023). This work is timely as integrated models of care—incorporating co-location of mental and physical health care and care coordination—are being implemented in primary care settings. Such models might reasonably be more widely adopted in subspecialty care to increase access to mental health services for subspecialists’ patients (Dillon-Naftolin et al., 2017; White & Belachew, 2022).

Limitations

This study has several limitations. First, it included data from the first two years of the COVID-19 pandemic. While this time was associated with a significant increase in mental health need, CYSCHN did not experience a health care access “shock” to the same extent as other children (Gigli & Graaf, 2023; Howard-Jones et al., 2022). As a result, the role of subspecialists in meeting mental health care needs should be reflected in the years of pooled data analyzed. In addition, the NSCH is a parent-report survey, and therefore, results may reflect differences in parent perceptions of need and unmet need for mental health care when compared to provider perceptions. Further, if a child received mental health care but it was not from a mental health provider, they may not answer the question affirmatively, resulting in an overestimation of unmet need. However, in this study, a caregiver’s report that their child didn’t see a mental health provider but should have implies that a non-mental health provider was not adequately meeting the mental health needs of their child, and that the caregiver believes a mental health professional would better meet their child’s mental health needs.

Conclusions

Pediatric subspecialists can assume a greater role in addressing the mental health care needs of CYSHCN, but may not need to play a greater role in directly providing mental health care to CYSHCN. Improved screening for mental health care need can be meaningful first steps towards increasing pediatric subspecialists’ role in addressing mental health care need. Further, increasing access to care for CYSHCN who have unmet need for pediatric subspecialist care and high rates of unmet mental health care requires additional attention. Future work should explore feasible strategies to support subspecialists in providing holistic, physical and mental health care to CYSHCN without assuming roles as mental health care providers.

Significance:

What’s Known on This Subject:

Children and youth with special healthcare needs (CYSHCN) have high rates of unmet physical and mental health care need. However, many CYSHCN receive medical care from pediatric subspecialists and policymakers support increasing their role in providing mental health care.

What This Study Adds:

CYSHCN who receive pediatric subspecialist care have high rates of mental health care need, but among those who see subspecialists, most of the need is met. This suggests pediatric subspecialists confer a benefit in addressing mental health needs of CYSHCN, while the extent of their role as providers of mental health care remains uncertain.

Abbreviations:

CYSHCN

children and youth with special health care needs

EBDP

emotional, behavioral, or developmental problem

NSCH

National Survey of Children’s Health

Data Statement:

All data used in analyses are publicly available from The National Survey of Children’s Health

Code Availability:

Code is available on request to the authors.