OBJECTIVE

To describe the prevalence, types, and trends over time of medical technology assistance (TA) in patients at the age of transition to adult care with childhood onset chronic conditions (COCCs) cared for at children’s hospitals.

PATIENTS AND METHODS

In this retrospective repeated annual cross-sectional cohort study of the Pediatric Health Information Systems inpatient data, patients with at least 1 hospitalization from January 1, 2008, to December 31, 2018 with a selected COCC were included. The COCCs investigated were brain and spinal cord malformation, cerebral palsy, heart and great vessel malformation, cystic fibrosis, sickle cell anemia, and chronic renal failure. TA was defined as requiring an indwelling medical device to maintain health status. Trends over time in TA were analyzed with the Cochran–Armitage test and generalized linear models.

RESULTS

During the study, 381 289 unique patients accounted for 940 816 hospitalizations. Transition-aged patients (19–21 years old) represented 2.4% of all included hospitalizations over the 11-year period, whereas patients ages 21 and above represented 2.7%. The annual proportion of patients with TA increased significantly from 31.3% in 2008 to 36.9% in 2018, a 17.9% increase (P < .001).

CONCLUSIONS

In this cohort of patients with select COCCs hospitalized at children’s hospitals, a substantial and growing number of patients at the age of transition to adult care required TA. Identifying adult providers with resources to manage COCCs and maintain medical devices placed in childhood is challenging. These trends warrant special attention to support the timely and successful transition of medically complex patients from pediatric to adult care.

As the life expectancy of patients with childhood onset chronic conditions (COCCs) improves with advancements in medical care, the need for a smooth process of transition from pediatric to adult care increases. Given the complex landscape of this transition, patients with COCCs experience poor health outcomes around the time of transfer to adult care.1  Adverse effects attributed to transition have been reported in a variety of health outcome metrics and a range of disease conditions.24  Measures of health service use, including patients lost to follow-up, acute care use, and readmissions, have all been noted to increase around the time of transition.57  Calls for improved transitional care to mitigate these outcomes have come from major medical societies including the American Academy of Pediatrics, the American Academy of Family Physicians, as well as subspecialty groups for cystic fibrosis, spina bifida, and others.811  A more comprehensive understanding of specific barriers to successful transition of care in patients with COCCs is critical to bridge the care “gap” between child and adult services.12 

One major factor that may complicate transition from pediatric to adult care is the presence of technology assistance (TA), defined as an indwelling medical device required to maintain health status.13  The presence of TA often signifies involvement of multiple subspecialty services, increased requirement for care coordination, increased inpatient use, and increased risk of readmission.1416  Patients with COCCs and TA seeking to transition from pediatric care have the additional challenge of identifying adult providers who have training and resources to manage TA devices placed by pediatric providers.17  Smoothing the transition process for patients with COCCs will likely require specific resources dedicated to lifelong management of medical devices placed in childhood.

The prevalence and types of TA in pediatric patients preparing to transition to adult care to inform allocation of resources, however, is not well described.13  In 1 previous study, researchers demonstrated that 20% of inpatients at a single quaternary children’s hospital were technology dependent. However, in this relatively small sample size, medical devices were not linked to diagnosis. Understanding the burden of TA in specific COCCs is important for disease-specific transition clinics and interventions. Furthermore, understanding trends over time is critical to anticipate future needs of patients with COCCs.

In this study, we sought to describe the prevalence and types of TA among patients with COCCs around the age of transition to adult care over a 10-year period who received care at children’s hospitals. We also aimed to describe trends in prevalence of TA in different age cohorts and disease states over time to inform future needs to support patients with TA. We hypothesized that the prevalence of TA increased over time as the number of patients with COCCs surviving to adulthood increased.

We conducted a retrospective repeated annual cross-sectional cohort study using the Pediatric Health Information System (PHIS; Children’s Hospital Association, Lenexa, KS) data for patients with at least 1 inpatient or observation hospital encounter from January 1, 2008 to December 31, 2018. The PHIS database contains demographic data, up to 41 International Classification of Disease, Ninth Revision (ICD-9) and 10th Revision (ICD-10) diagnosis and procedure codes, and resource use data from 52 tertiary care children’s hospitals.18  Located in 27 states and the District of Columbia, PHIS represents ∼20% of the national pediatric volume excluding normal newborn hospitalizations. Furthermore, inpatient care for patients with COCCs is concentrated in tertiary care children’s hospitals represented in the PHIS. For our analysis, we included only patients who were discharged from 40 hospitals that consistently participated in PHIS throughout the study period.

In this patient-level analysis, patients were assigned non–mutually exclusive diagnoses and procedures to provide meaningful estimates of both overall and year-to-year trends. Patients could be assigned to multiple diagnostic and medical device categories. In the overall analysis, patients were only counted once, and their hospitalization information was aggregated across the years of the study with demographics assessed on their initial hospitalization. In the year-to-year analysis, we aggregated each patient’s hospitalization data during the year and used their initial hospitalization in the year to assess demographics. Patients were included in multiple years and age cohorts if they had encounters in different years of the study. Trends were examined by COCC, age, and presence or absence of TA.

This study was approved by our internal institutional review board.

As has been done previously,15  we included patients with at least 1 of 6 commonly studied conditions originating in childhood using ICD-9 and ICD-10 codes (Supplemental Table 3). The 6 conditions were chosen for analysis because they have associations with complex medical needs, require strong caregiver and/or self-management skills to optimize well-being, and represent a range of organ systems, neurologic impairment (and thus capacity for the patient to participate in the transition process), and need for TA.7,15  The conditions studied were brain and spinal cord malformation, cerebral palsy, heart and great vessel malformation, cystic fibrosis, sickle cell anemia, and chronic renal failure. Cystic fibrosis and sickle cell disease were expected to have lower prevalence of TA in comparison with brain and spinal cord malformation, cerebral palsy, heart and great vessel malformation, and chronic renal failure.

Demographic variables included age (pediatric <16 years old; pretransition 16–18 years; transitional 19–21 years; and adult >21 years), sex, race and ethnicity, and primary payer. These age brackets were selected to align with the time line for transition supported by national guidelines: prepare youth ages 16 to 18 for transfer of care to adult setting, transfer patients ages 19 to 21, and integrate patients over the age of 21 into adult care.8 

Patients were classified as having TA if they required an indwelling medical device to maintain health status.15  TA was identified by using a previously developed coding algorithm from diagnostic and procedural codes and grouped into 7 categories: enteral feeding tube, permanent vascular access device, tracheostomy, cranial nerve stimulator, central nervous system shunt, cardiac implant, and peritoneal dialysis catheter.19  These device types were chosen because they are among the most common medical devices,13  representing a range of maintenance requirements, rates of complications, and need for revision in adulthood. Additional data collected to describe clinical characteristics included discharge diagnoses, number of encounters per year, and length of stay for each encounter.

Demographic and clinical characteristics were summarized at the patient-level across the study period and annually with frequencies and percentages or geometric means (because of the nonnormal distribution) with 95% confidence intervals. These characteristics were tested across years for linear trends by using the Cochran–Armitage test or generalized linear models as appropriate. All models were adjusted for patient clustering within hospitals with a random intercept for hospital and patient. To identify needs for disease-specific transitions programs, the proportions of hospitalized children with TA were calculated each year for each diagnosis of interest in aggregate and stratified by age groups. To identify most common types of TA, the proportion of each device type was calculated each year overall and by diagnosis of interest. All statistical analyses were performed by using SAS v.9.4 (SAS Institute, Inc, Cary, NC), and P values <.05 were considered statistically significant.

During the study period, there were 381 289 unique patients with an inclusion diagnosis, accounting for 940 816 encounters (Table 1). Transition-aged patients (19–21 years old) represented 2.4% of all included patients over the 11-year period. Adult patients (≥21 years old) represented 2.7% of patients. Over the study period, the overall proportion of patients with COCCs over the age of 21 increased by 26.9%. There were similar proportions of TA across the age ranges (29.6% <16 years old, 29.7% 16–18 years old, 35.0%, 19–21 years old, 34.0% >21 years old).

TABLE 1

Demographic and Clinical Characteristics of Patients With Select COCCs in Children’s Hospitals From 2008 to 2018

n (%)
Unique patients, n 381 289 
Sex  
 Male 206 155 (54.1) 
 Female 175 055 (45.9) 
Age, y  
 <16 336 307 (88.2) 
 16–18 25 449 (6.7) 
 19–21 9282 (2.4) 
 >21 10 251 (2.7) 
Payer  
 Government 210 677 (55.3) 
 Private 150 172 (39.4) 
 Other 20 440 (5.4) 
Presence of TA by age, y  
 <16 99 600 (29.6) 
 16–18 7567 (29.7) 
 19–21 3253 (35.0) 
 >21 3482 (34.0) 
Use  
 No. encounters per patient, geometric mean (95% CI) 1.67 (1.67–1.67) 
 Total bed days per patient, geometric mean (95% CI) 8.7 (8.7–8.8) 
n (%)
Unique patients, n 381 289 
Sex  
 Male 206 155 (54.1) 
 Female 175 055 (45.9) 
Age, y  
 <16 336 307 (88.2) 
 16–18 25 449 (6.7) 
 19–21 9282 (2.4) 
 >21 10 251 (2.7) 
Payer  
 Government 210 677 (55.3) 
 Private 150 172 (39.4) 
 Other 20 440 (5.4) 
Presence of TA by age, y  
 <16 99 600 (29.6) 
 16–18 7567 (29.7) 
 19–21 3253 (35.0) 
 >21 3482 (34.0) 
Use  
 No. encounters per patient, geometric mean (95% CI) 1.67 (1.67–1.67) 
 Total bed days per patient, geometric mean (95% CI) 8.7 (8.7–8.8) 

CI, confidence interval.

The proportion of patients with TA increased significantly over the course of the study period, from 31.3% in 2008 to 36.9% in 2018 (P < .001, Fig 1). This increase was reflected in all age groups (P < .001), with the exception of the >21 age group, where the proportion of TA remained constant over time (P = .874). The increase was significant in all diagnostic conditions with the exception of brain and spinal cord malformation, which remained stable over the course of the study period (Fig 2, Supplemental Table 4). The most prevalent technologies overall at the end of the study period (Table 2) were enteral feeding tubes (24.9% of patients with COCCs in 2018) and central nervous system shunts (10.2% of patients with COCCs in 2018). Although enteral feeding tubes were the most prevalent technology for each condition, other prevalent technologies varied as expected based on primary organ system involved. For instance, central nervous system shunts and cranial nerve stimulators were more prevalent in the neurologic COCCs (infantile CP and brain and spinal cord malformation) relative to the other conditions. The relative prevalence of device types remained stable from year to year (data not shown).

FIGURE 1

Proportion of patients with TA in each age group over time. All trends significantly increasing at P < .001 with the exception of >21 years old (P = .874).

FIGURE 1

Proportion of patients with TA in each age group over time. All trends significantly increasing at P < .001 with the exception of >21 years old (P = .874).

Close modal
FIGURE 2

Proportion of patients with TA by diagnosis over time. CP, cerebral palsy.

FIGURE 2

Proportion of patients with TA by diagnosis over time. CP, cerebral palsy.

Close modal
TABLE 2

Prevalence of TA by Device and COCC Among Inpatients in 2018

Percentage of Patients With Device in 2018, %
Feeding TubeCNS ShuntTracheostomyPermanent PacemakerVascular Access DevicePeritoneal Dialysis CatheterCN Stimulator
Overall 24.9 10.2 5.5 3.1 1.8 1.0 0.6 
Infantile C 57.8 18.8 12.8 0.7 0.5 0.0 1.2 
Brain and spinal cord malformation 32.5 25.7 8.0 0.6 1.0 0.2 1.2 
Chronic renal failure 26.2 4.3 5.2 3.3 6.1 7.4 0.5 
Cystic fibrosis 26.9 0.9 1.3 0.3 3.1 0.0 0.3 
Heart and great vessel malformation 16.7 2.1 4.3 7.2 2.2 1.3 0.3 
Sickle cell anemia 2.8 0.9 0.8 0.2 1.6 0.1 0.1 
Percentage of Patients With Device in 2018, %
Feeding TubeCNS ShuntTracheostomyPermanent PacemakerVascular Access DevicePeritoneal Dialysis CatheterCN Stimulator
Overall 24.9 10.2 5.5 3.1 1.8 1.0 0.6 
Infantile C 57.8 18.8 12.8 0.7 0.5 0.0 1.2 
Brain and spinal cord malformation 32.5 25.7 8.0 0.6 1.0 0.2 1.2 
Chronic renal failure 26.2 4.3 5.2 3.3 6.1 7.4 0.5 
Cystic fibrosis 26.9 0.9 1.3 0.3 3.1 0.0 0.3 
Heart and great vessel malformation 16.7 2.1 4.3 7.2 2.2 1.3 0.3 
Sickle cell anemia 2.8 0.9 0.8 0.2 1.6 0.1 0.1 

CP, cerebral palsy; CNS, central nervous system; CN, cranial nerve.

There was considerable variation across diseases in the proportion of encounters with TA (Fig 2, Supplemental Table 4). In 2018, patients with infantile cerebral palsy and brain and spinal cord malformation had the highest proportion of patients with TA at 68.8% (n = 8168) and 52.8% (n = 9364), respectively. In contrast, only 5.3% of patients (n = 364) with sickle cell anemia had TA.

There was also variation across diseases in the direction of trends in TA for the different age groups (Fig 2, Supplemental Table 4). Brain and spinal cord malformations, infantile cerebral palsy, and congenital heart disease all had increasing prevalence of TA over time in older age groups. Cystic fibrosis, sickle cell disease, and chronic renal failure all had decreasing prevalence of TA over time in older age groups.

In this large, longitudinal sample of inpatients with COCCs in children’s hospitals across the United States, almost one-third of patients required TA. Although the proportion of patients with TA was essentially even across age ranges, an overall increase of 17.9% occurred over the 11-year study period. This trend is likely due to advances in medical technology and pharmaceuticals to support patients with chronic conditions.13  The most prevalent technologies were enteral feeding tubes and central nervous system shunts. As noted in previous studies,7  significant variation in the proportion of patients with TA existed across disease diagnoses, with prevalence of TA over 50% in patients with cerebral palsy or brain and spinal cord malformation ranging to <6% in patients with sickle cell anemia.

The findings in this study are consistent with previous literature indicating that children’s hospitals are caring for increasing numbers of transition-aged and adult patients.20  This trend was observed despite joint statements from major medical societies promoting the importance of purposeful transition from pediatric to adult care when the patient is 18 to 22 years of age.8,9  Although adults in this study comprised only a small fraction of total admissions, thousands of patients over the age of 18 with COCCs still seek care at these 40 children’s hospitals each year.

Overall, these findings indicate that TA plays a substantial and growing role in the medical management of patients with COCCs, particularly those at the age of transition to adult care whose TA may raise additional challenges in this process. The trends observed warrant special attention from pediatric and adult providers tasked with overseeing the transition from pediatric to adult care. Given that <15% of youth with special health care needs receive adequate transition planning support,21  the challenges of pediatric to adult transfer preparation for patients with TA may be particularly daunting. Ensuring a smooth and safe transition for patients with TA requires a multifaceted and multidisciplinary approach.

Some guidance exists to address this need, such as that from The Center for Health Care Transition, a federally funded national resource center with a comprehensive framework to support stakeholders through the transition from pediatric to adult care.22  The transition process for all patients starts with pediatric providers, who must collaborate with patients, caregivers, and adult providers to lay the groundwork for eventual transfer of care. This process involves compiling and summarizing relevant medical documentation to inform adult providers of the patient’s history and anticipated ongoing needs. The health care summary is particularly salient for the growing population of patients with TA, who require a clear plan for long-term device management. In addition to a written summary, patients with medical complexity and TA are well served by a warm handoff from the pediatric provider. Ideally, pediatric providers serve as an ongoing resource for adult providers with less training and experience in dealing with COCCs and pediatric indwelling medical devices.22  Coding and reimbursement practice resources are available to providers to ensure adequate compensation for services necessary to support seamless transfer of care.23  This is particularly relevant to providers caring for patients with TA who require additional support in transition planning. Nevertheless, insurance barriers to transition remain, with high rates of insurance loss during the transition period.24 

Another key component of health care transition is identifying adult providers who are comfortable overseeing the longitudinal medical and technological needs of patients with COCCS. Identifying adult providers is a particular barrier for patients with TA, who are often managed by a team of surgical and nonsurgical subspecialists.17,25  Existing research indicates that adult providers lack training, experience, and comfort managing patients with COCCs.2628  Incorporation of a transition curriculum into internal medicine residency training, as well as post graduate continuing medical education for practicing physicians is warranted to increase comfort in assuming care of these patients. High-yield training during residency and continuing medical education for adult providers should be targeted at neurologic COCCS, such as brain and spinal cord malformation and cerebral palsy, because these diseases had the highest prevalence of TA in our study. In addition, training should focus on management of the most prevalent forms of TA across all COCCs, enteral feeding tubes and central nervous system shunts.

Incorporating transition care into pediatric residency and postresidency training is also warranted. Our study confirmed trends in existing literature that children’s hospitals are caring for growing numbers of adult patients with COCCs. Additional training and support for pediatric providers is necessary to ensure that patients receive appropriate care not only for their chronic conditions and TA but also for acquired conditions associated with aging, such as hypertension and increased propensity for deep venous thrombosis while hospitalized. Additionally, best practices for transitioning medically complex patients can be incorporated as a competency during pediatric residency in light of the growing number of patients with TA who require additional coordination during the process. At minimum, both pediatric and adult clinicians must be cognizant of the types of technology used, communicate openly on management, and, ideally, each become adept at the most prevalent devices in each environment.

Dual-trained internal medicine-pediatrics (med-peds) and family medicine providers may play a particularly important role in caring for medically complex patients at the age of transition, as their medical training inherently bridges the gap between pediatric and adult care. Furthermore, presence of an inpatient pediatric to adult transition program is more common at institutions with practicing med-peds providers.29  However, the supply of med-peds and family medicine–trained physicians is unlikely to meet the needs of a significant and growing population of young adults with medical complexity, necessitating special attention to processes of transition during residency training for pediatric and internal medicine providers.

The particularly high prevalence of TA among patients with certain COCCs in this study suggests a role for disease-specific patient advocacy groups to support both providers and patients by promoting attention to TA as part of the transition process. For instance, organizations like the Spina Bifida Association, the Hydrocephalus Association, the National Kidney Foundation, and the Cystic Fibrosis Foundation can educate patients and providers on the importance of including TA specific considerations into transition planning. Resources can be made available for patients and providers to document and track a transition plan specific to indwelling medical devices. TA device fact sheets with maintenance, common complications, and sizing can be incorporated into these plans, which will complement the transition toolkits maintained by the Center for Healthcare Transition. Additionally, future work can examine specific devices and their prevalence, rates of complications, and maintenance over time to understand if particular devices types pose barriers to transition independent from the patient’s underlying disease process. Finally, patients, patient advocacy groups, and providers across the age spectrum can advocate for policy interventions to improve insurance stability throughout the transition process among youth with COCCs.

This study has several important limitations. The cohort of patients was ascertained from hospitalization, so patients with CCOCs who were not hospitalized over the study period were not included. The use of inpatient data from children’s hospitals potentially biases our results with a sicker, more medically complex patient population. The degree to which results can be generalized to nonchildren’s hospitals is also unclear. Previous studies have revealed that the care of patients with complex medical conditions is increasingly concentrated in pediatric referral centers30 ; however, more recent studies indicate that a substantial proportion of children with select TA and lower disease severity receive care at nonchildren’s hospitals.31 

This study was focused on patients with select CCOCs and TA. Although the COCCs were selected to represent a range of organ system involvement and TA, it is unclear the extent to which these findings are generalizable to patients with other CCOCs and TA not included in the study. In addition, the inclusion criteria were limited to the use of ICD-9 and ICD-10 diagnostic codes, and TA was ascertained by using a combination of diagnostic and procedural codes. The sensitivity and specificity of the diagnostic and procedural codes used in this study have not been formally assessed.

Our findings indicate that a significant and growing proportion of patients with COCCs are dependent on TA devices that were placed during childhood. These trends warrant special attention to support the successful transition of medically complex patients from pediatric to adult care. Further study is needed on technology-specific outcomes around the time of transition and how to support adult providers in maintaining indwelling medical devices placed in childhood.

FUNDING: No external funding.

Dr Boggs conceptualized and designed the study, and drafted the initial manuscript; Drs Foster, Shah, Goodman and Garfield conceptualized and designed the study; Dr Hall performed data collection and conducted the initial analysis; and all authors reviewed and revised the manuscript.

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Competing Interests

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

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

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