The Future Pediatric Subspecialty Physician Workforce Meeting the Needs of Infants, Children, and Adolescents (2023) / Chapter Skim
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2 Children's Health Care Needs and Access to Subspecialty Care
2 Children's Health Care Needs and Access to Subspecialty Care
Pages 41-80
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From page 41... ...
A well-functioning health system needs to be organized to ensure good access to care for both common and uncommon acute and chronic health problems. While this chapter discusses some issues of access to health care in general, a framework is presented for understanding access to pediatric subspecialty physician care specifically in the context of the changing health care needs of infants, children, and adolescents.
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From page 42... ...
outpatient settings • Organizational accessibility • Wait times • Demographic and Cultural Factors • Racial/ethnic concordance • Language barriers • Transitions from pediatric to adult care Use • Short-term non-procedural consultation • Short-term procedural consultation • Long-term co-management • Principal care Outcomes • Patient outcomes • Clinical outcomes • Survival • Well-being • Family well-being • Clinician well-being* FIGURE 2-1 Framework for understanding overall access to pediatric subspecialty care.
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From page 43... ...
. The patient with likely celiac disease described above had a need for subspecialty care, but may have deferred treatment if they experienced disincentives to seeking such care, such as high deductibles or long wait times.
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, a growing proportion of children are affected by long-term (i.e., expected to last more than one year) medical and behavioral health conditions.
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. Therefore, pediatric subspecialty care can help children with chronic conditions to maintain and optimize their quality of life by maximizing their function and minimizing symptom burden.
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. Mental Health Mental and behavioral health conditions are prevalent among the children cared for by pediatric subspecialists, particularly children with chronic medical conditions (Reardon et al., 2020)
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are effective for common child mental health disorders (AHRQ, 2017, 2022; Cheung et al., 2013; Fristad and MacPherson, 2014; Müller et al., 2014; Slocum et al., 2014) , nearly half (49.4 percent)
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. Source of Demand for Subspecialty Care Subspecialty consultation and referral demand can be driven by patients, families, or primary care clinicians who perceive a need for consult with a subspecialist.
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But some of them, I need you to see this, I need to see you.3 Primary Care Clinicians Primary care clinicians may believe a subspecialty referral is needed if the health condition is rare and they lack the necessary expertise, they need advice on diagnosis or treatment for a complex problem, the patient needs a technical procedure, the patient needs ancillary services provided by a subspecialty team, or the patient has not responded to conventional therapy in primary care settings. An important determinant of primary care physicians' subspecialty referral behavior, which drives demand, is the breadth of their service provision.
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(For more on primary care–subspecialty collaboration and referrals, see Chapter 7.) Hospitalization and Inpatient Consultations Inpatient pediatric subspecialty consultation is not well described in the literature, but existing studies indicate there is likely wide variation in consultative practice related to patient, provider, and system factors (Darby et al., 2019; Kern-Goldberger et al., 2023; Sump et al., 2020)
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From page 51... ...
This is a national tragedy in a time of a mental health crisis for youth." – Developmental-Behavioral Pediatrician, Boston, MA "In southern California, there is a backlog of many [pediatric subspe cialists] , which results in long, worrisome at times, waits for families, especially in the realms of neurology, endocrinology, dermatology, rheu matology, and autism care." – Pediatric Nurse Practitioner, Orange County, CA These quotes were collected from the committee's online call for trainee, clinician, and family perspectives.
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(2020) found that the number of pediatric subspecialists in the United States increased by 77 percent between 2003 and 2019, with increases varying across subspecialties.
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, "the practice locations of pediatric subspecialists parallel the geographic distribution of children in the United States." The committee recognizes that more rural communities, for example, will not likely support full subspecialty practices, and so traveling for subspecialty care will likely always be necessary for various populations. Factors contributing to the regionalization of subspecialists include "that highly specialized physicians would be unlikely to have enough patients to attend to in any single community" and that access to technologies and other resources for care would be more available in centralized care centers (Gans et al., 2013)
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. Closure of inpatient pediatric units impacts access to pediatric subspecialty inpatient care, but also limits outpatient pediatric subspecialty care in those communities as well (Chang, 2018; França and McManus, 2018; Krugman and Rauch, 2022; VonAchen et al., 2022)
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However, callers with Medicaid/CHIP were given a 40-day longer wait time on average by these academic specialty clinics than callers with private insurance. Additionally, a meta-analysis of appointment availability audit studies that examined both pediatric and adult patients found that patients with Medicaid insurance experienced more difficulty securing an appointment for specialty care compared with primary care (Hsiang et al., 2019)
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Some health insurance plans may not cover out-of-state care or may have greater out-of-pocket costs if the out-of-state care is not considered innetwork; this varies by type of insurance (e.g., commercial, or public) and by type of plan (e.g., Health Management Organizations, Preferred Provider Organizations, Exclusive Provider Organizations, Point of Service Plans)
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From page 57... ...
. CMS also released guidance in 2022 on a new Medicaid health home benefit for children with medically complex conditions that includes providing access to the full range of pediatric specialty and subspecialty medical services, including services from out-of-state providers (CMS, 2022)
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Organizational Accessibility How subspecialty care is organized within a health care system contributes to the accessibility of that care, a dimension that can be monitored to some degree by appointment wait times. Most clinics monitor appointment wait time, often operationalized as the time to first visit for new patients.
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The specialties with the longest appointment wait times included genetics (21 weeks) , developmental pediatrics (19 weeks)
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. However, the diversity of the pediatric health care workforce in general, and the pediatric subspecialty workforce specifically, does not reflect the diversity of the population it serves.
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. Transitioning from Pediatric to Adult Care Many adolescents with chronic conditions experience fragmented care as they transition from pediatric to adult subspecialty care and may receive care from pediatric clinicians into adulthood (Lebrun-Harris et al., 2018; McManus et al., 2020)
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62 TABLE 2-1 Summary of Six Core Elements approach for pediatric and adult practices #3: #1: Transition #4: Transition planning Transition #2: readiness and/ and/or integration into #6: Transition Practice or and/or care Tracking and or orientation to adult approach to care #5: Transfer of care and/ completion or ongoing Provider policy monitoring adult practice or practice or initial visit care Pediatric Create and Track progress Conduct Develop transition Transfer of care Obtain feedback on the discuss with of youth and/ transition plan, including needed with information transition process and youth and/or or family readiness readiness assessment skills and communication confirm young adult has family transition assessments and medical summary, including residual been seen by the new preparation and prepare youth for adult pediatric clinician's clinician transfer approach to care, and responsibility communicate with new clinician Adult Create and Track progress Share and Communicate with Review transfer backage, Confirm transfer discuss with of young adult's discuss welcome previous clinician, address young adult's completion with young adult integration into and FAQs with ensure receipt of transfer needs and concerns previous clinician, and guardian, adult care young adult package at initial visit, update provide ongoing care if needed and guardian, if self-care assessment and with self-care skill needed medical summary building and link to needed specialists NOTE: Clinicians who care for youth and/or young adults throughout the lifespan can use both the pediatric and adult sets of core elements without the transfer process components. SOURCES: White et al., 2020.
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. See Chapter 3 for data analyses on the use of pediatric subspecialty care and Chapter 7 for more on the primary care–subspecialist interface, including referral.
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for patients not treated at a pediatric cancer center (Howell et al., 2007)
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Medical advances in the twentieth century and more recently have resulted in more children with complex medical needs surviving past infancy, increasing the need for timely access to pediatric subspecialty care (Lonetti et al., 2019; Oh et al., 2022; Siegel et al., 2020)
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. Finding #2-5: Children covered by Medicaid, rural children, and children with chronic illness or special health care needs often face increased access barriers to pediatric subspecialty care.
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Conclusion #2-4: The pediatric workforce and the health care system more generally need to be nimble in their ability to be responsive to the changing health care needs of infants, children, and adolescents. Conclusion #2-5: A systematic approach to monitoring children's changing health needs and access to pediatric primary and subspecialty care is needed to inform interventions to improve equity in subspecialty care as well as to prepare the optimal workforce to be able to address those needs.
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From page 68... ...
Therefore, in order to achieve a goal of promoting collaboration and effective use of services between pediatric primary care clinicians and subspecialty physicians, the committee provides the following recommendation: RECOMMENDATION 2-1 The Agency for Healthcare Research and Quality should submit a biennial report to the Secretary of the Department of Health and Human Services summarizing the changing demands and needs for pediatric primary and subspecialty care, status of access to that care, and disparities in receipt of those services. This report should include information on the pediatric generalist and sub specialist workforce broadly (including data on clinicians from back grounds underrepresented in medicine)
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2012. Academic medical centers and equity in specialty care access for children.
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data query: Indicator 1.9: Does this child have current or lifelong health conditions? https://www.childhealthdata.org/browse/survey/ results?
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2005. Effects of the State Children's Health In surance Program expansions on children with chronic health conditions.
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2021. Editorial: The pediatric subspecialty workforce is more complex than meets the eye.
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2013. Assuring children's access to pediatric subspecialty care in California.
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youth with and without special health care needs. Pediatrics 142(4)
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2023. Prevalence and characteristics of autism spectrum disorder among children aged 8 years -- Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2020.
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2017. Medical comorbidities in children and adolescents with autism spectrum disorders and attention deficit hyperactivity disorders: A systematic review.
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2016. Family perspectives on high-quality pediatric subspecialty referrals.
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2019. Wait times, health care touchpoints, and nonattendance in an academic pediatric dermatology clinic.
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2007. The future pediatrician: The challenge of chronic illness.
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2004. Parent's language of interview and access to care for children with special health care needs.
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