The current state of adult metabolic medicine in the United States: Results of a nationwide survey

Abstract

Purpose:

Patients with inherited metabolic disorders (IMDs) now have improved health outcomes and increased survival into adulthood. There is scant evidence on managing adults with IMDs. We present an analysis of current care practices for adults with IMDs in the United States.

Methods:

We created and distributed an online survey to US members of the Society of Inherited Metabolic Disorders. The survey addressed ambulatory care, acute management, and health care transition (HCT) practices of adults with IMDs.

Results:

The survey was completed by 91 providers from 73 institutions. Most adult patients with IMDs receive lifelong care from a single metabolic clinician, predominantly in pediatric clinic settings. Adults receive comprehensive ambulatory metabolic care, but fewer trainees participate compared with pediatric visits. Most acute IMD management occurs in pediatric hospitals. Clinician comfort with HCT increased the frequency of HCT planning. Overall, all respondents felt that providing specialized care to adults with IMDs is high value.

Conclusion:

Our survey demonstrates the paucity of clinical resources dedicated to adult metabolic medicine. Care is fragmented and varies by medical system. Interest in HCT is robust but would benefit from standardized practices. Our findings reinforce the need for greater focus on adult metabolic medicine in the United States.

Introduction

Advances in screening, diagnosis, and management of inherited metabolic disorders (IMDs) have led to improved health outcomes, increased life expectancy, and new recognition of adult-onset phenotypes.^1,2 From these successes, a growing cohort of adults with IMD (AIMDs) has emerged. Recent European reports suggest that adults may comprise 50% of the IMD population.^3,4 In the United States, the demographics and current state of care for AIMDs are unknown.

The need for clinicians experienced in adult metabolic medicine was first recognized nearly 3 decades ago.⁵ Despite this call, AIMDs are primarily under the care of pediatrics-trained providers, owing to the scarcity of metabolic providers, or lack metabolic follow-up.^3,6 Given the progressive and multiorgan nature of many IMDs, new adult-onset comorbidities, and varied support systems, pediatrics-trained providers may not be comfortable serving the aging IMD population. Health care transition (HCT), the purposeful, planned passage from pediatric care to adult-centered care, is increasingly emphasized for adolescents with IMD.^7–12 Yet, clinicians with training in metabolic medicine, particularly those specifically dedicated to the care of adults, are scarce and few clinical management guidelines exist.^13,14 Furthermore, the complexity of US health care complicates standardization of care.^13,14

To facilitate care of this unique population and create best practices, the current state of care for AIMDs must be defined. We conducted a national survey of metabolic providers to characterize medical care and HCT for AIMDs.

Materials and Methods

Study population

Society of Inherited Medical Disorders members affiliated with a medical practice in the United States were considered eligible. Physicians, physician extenders, nurses, dieticians, and genetic counselors were included. Exclusion criteria were US members not associated with a clinic or members practicing internationally, because of differences in health care models. A total of 113 institutions and 266 eligible participants were identified (Supplemental Table 1).

Survey distribution

An email containing a short invitation to complete the survey and a direct link with the survey’s URL was sent to all eligible participants. Invitations were resent to non-responders a total of 4 times at 2-week intervals between June 2020 and July 2020.

Survey instrument

We created an online survey to assess the availability of specialized care for AIMDs (Supplemental Information). Previous frameworks on HCT for young adult cancer survivors informed survey design, including the 5 main categories queried: institutional information, pediatric clinic structure, adult ambulatory care, inpatient management of AIMDs, and HCT policies and practices.¹⁵ The survey contained 64 multiple choice questions and 9 open-ended questions. When applicable, questions with an “other” answer choice had an opportunity for free-text entry. Adults were defined as patients 21 years and older for all survey questions. Adult-centered care was defined as a model of health care that focuses on adult medical issues through developmentally appropriate interactions primarily with the patient and was adapted from Got Transition and previous HCT surveys.^15,16

Survey analysis

Respondents were divided into 3 groups based on their characterization of their home institution in question 9. Health systems where pediatric and adult providers work together with one electronic health record (EHR), one credentialing process, uniform health insurance acceptance, and a common pharmacy and clinical laboratory were defined as “affiliated” institutions. Examples of affiliated institutions include Massachusetts General Hospital, Johns Hopkins, and Duke University. Health systems that contain only pediatric or adult providers were defined as “nonaffiliated” institutions. For metabolism providers, nonaffiliated institutions are primarily stand-alone children’s hospitals, such as Children’s Hospital of Philadelphia, Children’s Hospital Boston, or Texas Children’s Hospital. In these health care systems, providers must undergo separate credentialing at the pediatric and adult hospitals, and there are no common lab, pharmacy, or nutrition services. Only 1 respondent from a nonaffiliated institution worked at a stand-alone adult hospital. Their responses are reported in respondent characteristics but excluded from analysis owing to the inability to generate representative comparisons. A total of 7 respondents work in systems that they classified as “other,” mainly private metabolism practices unaffiliated with academic medical centers.

We received responses from more than 1 provider from 12 institutions. Nearly all respondents reported a lack of institutional standards regarding AIMD care. Responses were analyzed independently and not grouped by institution due to this lack of standard institutional practices.

Statistical analysis

Survey responses were analyzed using descriptive statistics. Logistic regression was used to identify factors associated with care for AIMDs. Results were reported as odds ratios (ORs) with 95% confidence intervals. For categorical variables, χ²tests or Fisher’s exact tests were used, as appropriate. Two-sided P values < .01 were considered statistically significant owing to the need to perform multiple comparisons. All analyses were conducted using Stata 16.1.

Results

Respondent characteristics

The survey completion rate by institution was 64.6% (73/113) and by individual was 34.2% (91/266). Institution and participant demographics are shown in Supplemental Tables 1 and 2. Physicians were the primary respondents (86.8%, 79/91). All respondents regularly provided care to adult patients, and 98.9% (90/91) saw patients of all ages.

Adult-centered ambulatory metabolism care

Approximately half of the respondents (57.8%, 52/90) reported offering adult-centered care based on the introductory definitions. However, the wording of these definitions did not account for the complexity of the AIMD experience. Respondents may have answered “no” if their institution lacks an adult-specific clinic rather than providers not offering adult models of health care. Likewise, a negative response may indicate the limitations of adult-focused care for individuals with intellectual or learning disabilities. In all health systems, AIMDs predominantly receive care in a pediatric clinic setting (Figure 1A). Only 16.7% (15/90) of respondents reported that their institution has a designated provider for AIMDs. For institutions with a designated adult provider, only 43.8% (7/16) have a clinician trained in adult medicine, either through internal medicine, combined internal medicine/pediatrics, or neurology residencies (Supplemental Figure 1).

Figure 1. Ambulatory care models for AIMDs differ based on institution type, including variation in offering adult-centered care, training of designated providers, and ease of identifying subspecialty providers.

A. Clinical care setting for AIMDs by institution type. B. Training of the primary care provider for AIMD. C. Training of non–IMD subspecialty providers for AIMD by health system type. D. Training of mental health providers for AIMD. E. Ease of identifying subspecialty providers and mental health providers for AIMD. A, affiliated; AIMD, adults with inherited metabolic disorders; IMD, inherited metabolic disorder; NA, non affiliated; O, other.

Respondents indicated which clinical staff are routinely present at pediatric IMD visits and AIMD visits. ORs for staff attendance were calculated for each health system type (Supplemental Figure 2). Routine AIMD care in all systems is equally likely to include physician extenders, genetic counselors, dietitians, and social workers. AIMDs followed in nonaffiliated institutions are significantly less likely to see neuropsychology or behavioral health at their ambulatory IMD visits. Genetics trainees are significantly absent from ambulatory adult metabolic care in nonaffiliated systems and trend toward significance in affiliated and other systems.

Medical home for AIMDs

Most AIMDs see a primary care doctor with training in adult medicine (Figure 1B). Continuation of nonmetabolic pediatric subspecialty care into adulthood occurs more frequently at nonaffiliated institutions (OR = 2.91, CI = 1.15–7.35, P = .024) (Figure 1C). In affiliated and other centers, 28% of respondents reported that their adult patients follow up with at least 1 pediatric nonmetabolic subspecialist. For mental health care, 55% of respondents refer their AIMDs to an adult-trained provider (Figure 1D). This percentage is less among respondents practicing in nonaffiliated settings (30%), where many indicated that their mental health resources were unknown (48.5%). Identifying appropriate non-metabolic providers for subspecialty and mental health care is a common difficulty across all health care systems (Figure 1E).

Hospital management

Inpatient management of AIMDs depends on institution type. Most institutions admit adults (≥21 years) for metabolic emergencies (Figure 2A); however, adults in nonaffiliated institutions are significantly more likely to be admitted to a pediatric inpatient service (Figure 2B). Training of the inpatient clinician is highly variable and independent of institution type (Supplemental Figure 3). Across all systems, less than 40% of adult patients are seen by a provider with any formal training in adult medicine during inpatient admissions. If transfer to an adult hospital for metabolic admissions occurs, it is usually after 22 years of age (Figure 2C; stratified by institution in Supplemental Figure 4A). Disposition for metabolic emergencies frequently depends on individual patient characteristics, such as neurocognitive status and therapy needs. Only 7 respondents (7.7%) reported formalized guidelines for determining patient disposition for metabolic emergencies.

Figure 2. Inpatient management of AIMDs varies based on institution type.

A. Percentage of institutions that admit AIMDs (≥21 years) for metabolic decompensation by institution type. B. Admission location for metabolic decompensation for AIMDs by institution type. *P < .01. A, n = 44; NA, n = 26; O, n = 6. C. Age when patient is admitted to adult ward or hospital for metabolic decompensation. D. Percentage of institutions that admit AIMDs (≥21 years) for acute medical issues other than metabolic decompensation by institution type. E. Admission location for acute medical issues other than metabolic decompensation for AIMDs by institution type. *P < .01. A, n = 41; NA, n = 8; O, n = 5. F. Age when a patient is admitted to adult ward or hospital for medical issues other than metabolic decompensation. G. Locations where metabolic formula is on formulary by institution type. *P < .01. H. Locations where emergency medicine for metabolic decompensations is on formulary by institution type. *P < .01. I. Percentage of institutions that perform in-house metabolic laboratories by institution type. *P < .01. A, affiliated; AIMD, adults with inherited metabolic disorders; NA, nonaffiliated; O, other.

Disposition for non-metabolic hospital admissions significantly depends on health system type. Only 24.2% of nonaffiliated institutions admit adults for acute care unrelated to their underlying IMD (Figure 2D). If admission occurs at a nonaffiliated institution, there is a high likelihood that AIMDs will be admitted to a pediatric service. In contrast, affiliated and other institutions admit nearly all patients to adult services (Figure 2E). Generally, admission to adult hospitals for nonmetabolic acute care occurs at younger ages. Among 18- to 21-year-olds, 38.7% receive non-metabolic care at adult hospitals vs 16.7% of 18- to 21-year-olds presenting for IMD-related care (Figure 2F; stratified by institution in Supplemental Figure 4B).

The ability to provide acute comprehensive metabolic management is determined by health system. Affiliated and other hospitals are significantly more likely to have metabolic formula available at both pediatric and adult hospitals (Figure 2G). Fewer nonaffiliated institutions (31.2%) have metabolic formula available on formulary at their corresponding adult hospital. Similarly, medications for metabolic emergencies, such as intravenous sodium phenylacetate and sodium benzoate, are significantly more likely to be on formulary at both pediatric and adult hospitals for affiliated and other centers compared with nonaffiliated centers (affiliated: 66.7%, nonaffiliated: 12.9%, other: 66.6%; P < .01) (Figure 2H). In-house biochemical laboratories are available to 63.7% of respondents; however, the ability to perform in-house biochemical testing, such as plasma amino acids and urine organic acids, depends on institution type. Nonaffiliated systems are significantly more likely to house a biochemical laboratory than affiliated systems (Figure 2I).

HCT services for young adults

HCT planning

A key component to providing adult-centered care is preparing adolescents for greater medical and social autonomy. HCT is an organized process for evaluating and improving adolescents’ ability to care for themselves. When queried about their practices, nearly 80% reported regularly providing education on HCT (Figure 3A). Fewer respondents employed other key elements of HCT planning, such as transition readiness assessments (13.1%) or completion of portable health care summaries (39.2%). This was consistent across all health systems. Nationally, HCT education is led by physicians and dietitians, occurs during ambulatory visits, and includes topics such as medical autonomy, insurance, educational supports, and guardianship (Supplemental Figure 5A–C). Portable medical summaries are completed as a collaboration between physicians, physician extenders, nursing, genetic counselors, and dietitians and prominently communicate emergency management (Supplemental Figure 6A and B). They are given as paper documents or exist in the EHR (Supplemental Figure 6C). Assessment of medical self-management abilities is only performed by 13% of respondents, and no respondents reported using a validated, standardized readiness tool (Supplemental Figure 7).

Figure 3. HCT planning was similar across medical systems, lacks use of standardized tools, and positively correlates with comfort.

A. Percentage of respondents reporting regular practice of HCT elements, including education, assessment of transition readiness, and portable health care summary completion. B. Age that HCT is introduced. C. Frequency of transfer to adult metabolism provider by institution type. D. Age at which transfer occurs by institution type. A, n = 10; NA, n = 9; O, n = 1. E. Respondents reported comfort with HCT concepts. F. Frequency of completion of HCT-related activities: transition readiness assessment (left), portable health care summaries (middle), and HCT education (right) stratified by provider comfort with HCT. A, affiliated; HCT, health care transition; NA, nonaffiliated; O, other; PHS, portable health summary; TRA, transition readiness assessment.

Across respondents, there was less consensus on the age for introducing HCT (Figure 3B). Less than one-quarter of respondents begin HCT at the recommended age of 12 to 14 years old.¹⁶ Affiliated institutions are more likely to introduce HCT before legality at 18 years, whereas a high proportion of nonaffiliated and other institutions initiated discussions after 18 years of age.

Health care transfer

Transfer to a new designated adult metabolism provider was reported by 22% of respondents. There is no significant difference in the rate of transfer by medical system (Figure 3C). Affiliated systems are most likely to transfer between the ages of 18 and 21 years old (Figure 3D). Nonaffiliated and other institutions are more likely to wait until after 22 years.

Provider comfort with HCT

HCT is increasingly recognized as a central facet for improving well-being for youth with IMD.^17–19 Among metabolism providers, most reported being “somewhat comfortable” or “very comfortable” with the concept of HCT (Figure 3E). Providers who reported being very comfortable with HCT practices are the most likely to educate their patients (Figure 3F, left panel). Completion of transition readiness assessments also directly correlated with provider comfort (Figure 3F, right panel), whereas completion of portable health care summaries was unrelated to provider comfort level (Figure 3F, middle panel).

Barriers for adult-centered care

Respondents identified several challenges to caring for AIMDs and addressing HCT and transfer (Table 1). There is near universal agreement that offering dedicated adult-centered care to AIMDs is important.

Table 1.

Reported barriers to adult metabolic medicine and health care transition and transfer

	Respondents Endorsing (%)
Perceived Barriers	A	NA	O
Barriers to Adult Metabolic Medicine
Dietary nonadherence	82.4	63.6	71.4
Mental health needs	58.8	69.7	85.7
Insurance gaps	70.6	63.6	57.1
Medication noncompliance	56.9	51.5	42.9
Lack of IMD follow-up	47.1	45.5	57.1
Identifying non-IMD subspecialists	37.3	60.6	42.9
Finding community supports	49	48.5	28.6
Designating a decision maker	19.6	36.4	14.3
Need for guardianship	21.6	24.2	14.3
Substance abuse	13.7	9.1	28.6
Barriers to Health Care Transition and Transfer
Lack of available adult IMD providers	60.8	75	57.1
Insurance limitation	39.2	56.3	85.7
Patients desire continuation of current care	37.3	50	57.1
Caregivers desire continuation of current care	37.3	40.6	42.9
Defining location for inpatient admissions	21.6	46.9	42.9
Lack of non-IMD subspecialty providers	21.6	37.5	42.9
Appointment nonadherence	39.2	31.3	28.6
Lack of a primary medical decision maker	17.6	21.9	0

A, affiliated; IMD, inherited metabolic disorder; NA, nonaffiliated; O, other.

Discussion

Why dedicated care for AIMDs?

Thanks to early diagnosis and better medical care, life expectancy has increased for patients with inborn errors of metabolism. Transitioning from family-centered, developmentally focused pediatric care to a less supportive adult health care system that is unfamiliar with IMD is a big challenge. When we also add the fact that many patients with IMD have intellectual limitations, it increases the complexity of care for AIMDs. To prepare metabolic clinicians to support this population, knowledge of the current national landscape of adult metabolic medicine is a crucial step.

Creating a medical home for AIMDs

Genetics workforce shortages may impede development of targeted adult metabolic medicine programs.^6,20 Respondents frequently voiced concerns about overall access for patients with IMD owing to long wait lists and inequitable geographic distribution. Although increasing recruitment of genetics trainees is critical, AIMDs continue to require care while workforce expansion is addressed. Current metabolism practitioners can reinforce adult models of health care by encouraging patient-led decision making and self-management in patients who have the capacity to participate in care discussions. Adult-oriented ancillary staff, such as social workers, case managers, or care navigators, have also been shown to improve health outcomes in other populations of adults with special health care needs.^21,22

To create a medical home for AIMDs, greater engagement and education of local adult primary care and subspecialty providers is necessary. Many respondents referenced a knowledge gap among adult non-metabolic practitioners on the basic care of people with IMD. Per respondents, adult non-metabolic clinicians often underestimate the complexity and fragility of patients with IMD and were disengaged from learning about rare genetic diseases. The specialists and primary care clinicians caring for AIMDs should work in concert to address the patient’s health concerns. Alternatively, adult complex care or coordinated care clinics may be established. Innovating models of healthcare delivery may offer AIMDs greater accessibility and more care continuity.

Addressing health systems barriers

The ability to deliver comprehensive health care to AIMDs depends on the medical system. Affiliated institutions demonstrate management stability. Adults who receive care in these systems benefit from a uniform EHR and the ease of communication between metabolic physicians and their surrounding colleagues. Intra-institutional referrals facilitates the multisystem management required for many IMDs. Because most metabolism practitioners provide lifelong care, it is beneficial to have pediatric and adult providers under the same medical umbrella.

In contrast, nonaffiliated health systems demonstrate greater care fragmentation. AIMDs lack a true medical home, frequently bouncing between multiple institutions for hospital admissions, primary care, and subspecialty visits. Nonaffiliated institutions require greater participation of non-IMD adult practitioners in outside health systems. Care may be cofounded by poor communication, a general lack of education on IMD, and the need for greater self-advocacy from AIMDs themselves. Robust educational outreach for non-IMD providers and HCT curriculum for AIMDs is critical for the success and safety of this adult population.

Standardizing HCT for IMD

Although HCT has traditionally been delegated to pediatricians, there is growing support for subspecialty-driven transition programs.²³ However, despite strong evidence of their utility, standardized transition toolkits are used rarely, even those specifically developed for IMD by the New England Consortium of Metabolic Programs.^24,25 The Socio-ecological Model of Adolescent/Young Adult Readiness for Transition, a framework of transition readiness originally developed for survivors of childhood cancer, has informed the practice of transition readiness among many childhood chronic health conditions.^26–28 Survivorship care plans (eg, Smart Adult Living After Childhood Cancer) provide information to enhance self-management, including risks, complications, and necessary care.^29,30 These tested transition tools could serve as the model for the development and dissemination of IMD-specific assessments and care plans.

HCT is more complex for adults who require dietary therapy or those with intellectual disability. Generally, these patients receive more intensive support from the clinician, dietitian, and social worker and greater parental oversight because of medical fragility. This style of care coordination does not translate easily to adult models of health care, and metabolic clinicians play an outsized role in their primary care management. HCT planning must be more rigorous and proactive, focusing on the substantial responsibility for self-care or the need to designate medical and financial decision makers.

International collaboration may be possible to develop IMD-specific HCT instruments. A recent survey of European providers echoes the US experience, including lack of institutional protocols, underutilization of standardized HCT tools, and a paucity of adult metabolic medicine clinicians.³¹ Integrating the American experience with that of our international colleagues will enrich the creation of HCT for AIMD.

HCT planning is necessary for all patients, even when receiving continuous care from the same provider. A common misconception among respondents is the difference between HCT and transfer of care. Transfer of care occurs when a young adult leaves their current pediatric provider and establishes care with a new adult provider. HCT promotes medical autonomy, prepares adolescents for reaching the age of majority, and prevents adverse medical and social outcomes.²³ As 1 respondent wrote, “Adult transition is everyone’s responsibility.”

Recommendations

Our survey illuminated current obstacles for adult metabolic medicine in the United States (Table 2). These themes were similar across all medical system types. Table 2 summarizes common barriers and potential solutions. Increasing the visibility of adult metabolic medicine among patients, caregivers, and the larger medical community is a necessary first step. The long-term success of adult metabolic medicine is dependent on adult providers trained in rare metabolic disorders.

Table 2.

Recommendations for improving adult metabolic medicine in the United States

Current Barrier to Adult IMD Care	Potential Solution
• Scarcity of adult-trained biochemical geneticists.	• Employment of adult-oriented ancillary staff: social worker, case manager, care navigator. • Improved partnerships with local adult primary care providers.
• Limited trainee exposure to adult metabolic medicine.	• Implementation of logbook category specific to adult metabolic care for Medical Biochemical Genetics fellows.
• Difficulty identifying adult medicine specialist with an interest in IMD patients	• Outreach to local medical community clinicians interested in chronic childhood-onset disease and HCT (ie, physicians trained in internal medicine and pediatrics or family medicine). • Promote adult metabolic medicine at institution-wide educational opportunities (ie, grand rounds). • Development of adult complex/coordinated care clinics for better integration of health services.
• IMD clinicians are less familiar with management of adult-onset comorbid medical conditions	• Increase visibility of medical genetics in internal medicine and family medicine residencies to recruit trainees. • Develop more combined internal medicine/genetics residencies.
• Young adult patients unprepared for adult models of health care delivery	• Preemptive discussion about differences in adult care, including shorter appointments, greater emphasis on patient-driven decisions, limited care coordination, more fragmented care. • Schedule a debriefing session after patient’s first appointment with new adult providers.
• HCT readiness predominantly measured by provider opinion	• Use of validated or IMD-specific HCT readiness assessments, such as Transition Readiness Assessment Questionnaire or NECMP HCT checklist
• Lack of portable health care summaries	• Creation of comprehensive portable health care summaries using template provided by GotTransition or NECMP.
• HCT minimized for adolescents who remain with the same provider	• Using GotTransition's HCT toolkit for patients who will not be transferring providers
• Young adults on dietary therapy have increased complexity preventing medical autonomy	• More rigorous HCT planning that starts earlier and focused on the substantial responsibility for self-care, education on emergency signs and symptoms, and greater need for personal advocacy. • Extensive documentation for acute care in paper and electronic forms. Consider medical alert bracelet.
• Caregiver resistance to HCT and transfer	• Introduce HCT early and reinforce concepts at every visit. • Use patient and caregiver input to set goals for medical and social autonomy. Measure HCT progress through interval transition readiness assessments.

HCT, health care transition; IMD, inherited metabolic disorder; NECMP, New England Consortium of Metabolic Programs.

Limitations

Our study is limited by the nature of surveys. We queried members of the Society of Inherited Medical Disorders, the US professional society for IMD, who are likely more invested in IMD care than the general US genetics workforce. Self-selection bias may have led to survey completion by individuals with specific interest in adult metabolic medicine. These respondents may be more knowledgeable about HCT, leading to an overestimation of the frequency and depth of transition planning for adolescents with IMD. Our results on HCT planning may be skewed by physician overrepresentation. We chose to analyze responses by individual because of the lack of institutional standardization. It is possible that discrepancies exist among respondents from the same institution owing to differences in personal practice or patient-specific accommodations. The purpose of this study was to obtain a baseline on the state of adult metabolic medicine in the United States, including demonstrating the lack of formal institutional or societal guidelines, through detailed accounts from experienced practitioners. Future investigations into this field may be used to validate our results.

Conclusion

Our data revealed that most adults receive lifelong care from the same metabolic practice and face common challenges in the transition to adulthood. Metabolic providers in the United States need support to expand adult-centered metabolic care. AIMDs have distinct challenges in obtaining adult-centered care, including the rarity and complexity of their diagnoses, treatment considerations, and availability of appropriate providers. The ability to provide stable adult care is highly dependent on medical system infrastructure. Nonaffiliated institutions face greater challenges, including risks associated with admitting adults to pediatric hospitals. Clinicians within these systems will need to cultivate resources at local adult medical systems and adequately prepare their patients for transfer. Critical next steps in the care for AIMDs include improved education for adult primary care providers and non-metabolic specialists, greater acceptance of standardized HCT, and adult-focused IMD training. Metabolic medicine should celebrate the successes of our new population of AIMDs by further optimizing their care.

Data Availability

De-identified data is available on request to the corresponding author. All data have been stored on the Children’s Hospital of Philadelphia RedCap server. The corresponding author can be contacted for data access.