Estimating the prevalence of neurosurgical interventions in adults with spina bifida using the Health Facts data set: implications for transition planning and the development of adult clinics

Joseph S. Domino Department of Neurosurgery, University of Kansas Medical Center, Kansas City, Kansas;

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Paige Lundy Department of Neurosurgery, University of Kansas Medical Center, Kansas City, Kansas;

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Earl F. Glynn Children’s Mercy Research Institute, Children’s Mercy Kansas City, Kansas City; and

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Michael Partington Department of Neurosurgery, University of Kansas Medical Center, Kansas City, Kansas;
Division of Neurosurgery, Children’s Mercy Kansas City, Kansas City, Missouri

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OBJECTIVE

As the care of patients with spina bifida continues to evolve, life expectancy is increasing, leading to a critical need for transition planning from pediatric-based to adult-based care. The burden of neurosurgical care for adults with spina bifida remains unknown. In this study, the authors sought to use a large national data set to estimate the prevalence of neurosurgical interventions in adults with spina bifida.

METHODS

This study utilized Health Facts, which is a de-identified proprietary data set abstracted from all Cerner electronic health records. It includes 69 million unique patients with > 500 million encounters in 580 centers. Validation, technical exclusions, and data filters were applied to obtain an appropriate cohort of patients. The ICD-9 and ICD-10 codes for all types of spinal dysraphism, as well as the Current Procedural Terminology (CPT) codes for hydrocephalus procedures, spinal cord untethering, and Chiari decompression, were queried and records were retrieved. Demographic variables along with differences in age groups and temporal trends were analyzed.

RESULTS

Overall, 24,764 unique patients with ≥ 1 encounter with a spinal dysraphism diagnosis between 2000 and 2017 were identified. The pediatric cohort included 11,123 patients with 60,027 separate encounters, and the adult cohort included 13,641 patients with 41,618 separate encounters. The proportion of females was higher in the adult (62.9%) than in the pediatric (51.4%) cohort. Annual encounters were stable from 2 to 18 years of age, but then decreased by approximately half with a precipitous drop after age 21 years. The sex distribution of adults and children who underwent procedures was similar (54.6% female adults vs 52.4% female children). Surgical interventions in adults were common. Between 2013 and 2017, there were 4913 procedures for hydrocephalus, with 2435 (49.6%) adult patients. Similarly, 273 (33.3%) of the 819 tethered cord procedures were performed in adults, as were 307 (32.9%) of 933 Chiari decompressions.

CONCLUSIONS

The Health Facts database offered another option for studying care delivery and utilization in patients aging with spina bifida. The median age of this population has now reached early adulthood, and a significant number of neurosurgical procedures were performed in adults. An abrupt drop in the rate of encounters occurred at 21 years of age, possibly reflecting transition issues such as access-to-care problems and lack of coordinated care.

ABBREVIATIONS

CPT = Current Procedural Terminology; EHR = electronic health record; HCUP = Healthcare Cost and Utilization Project; MDC = major diagnostic category; NIS = National (Nationwide) Inpatient Sample; NSBPR = National Spina Bifida Patient Registry.

OBJECTIVE

As the care of patients with spina bifida continues to evolve, life expectancy is increasing, leading to a critical need for transition planning from pediatric-based to adult-based care. The burden of neurosurgical care for adults with spina bifida remains unknown. In this study, the authors sought to use a large national data set to estimate the prevalence of neurosurgical interventions in adults with spina bifida.

METHODS

This study utilized Health Facts, which is a de-identified proprietary data set abstracted from all Cerner electronic health records. It includes 69 million unique patients with > 500 million encounters in 580 centers. Validation, technical exclusions, and data filters were applied to obtain an appropriate cohort of patients. The ICD-9 and ICD-10 codes for all types of spinal dysraphism, as well as the Current Procedural Terminology (CPT) codes for hydrocephalus procedures, spinal cord untethering, and Chiari decompression, were queried and records were retrieved. Demographic variables along with differences in age groups and temporal trends were analyzed.

RESULTS

Overall, 24,764 unique patients with ≥ 1 encounter with a spinal dysraphism diagnosis between 2000 and 2017 were identified. The pediatric cohort included 11,123 patients with 60,027 separate encounters, and the adult cohort included 13,641 patients with 41,618 separate encounters. The proportion of females was higher in the adult (62.9%) than in the pediatric (51.4%) cohort. Annual encounters were stable from 2 to 18 years of age, but then decreased by approximately half with a precipitous drop after age 21 years. The sex distribution of adults and children who underwent procedures was similar (54.6% female adults vs 52.4% female children). Surgical interventions in adults were common. Between 2013 and 2017, there were 4913 procedures for hydrocephalus, with 2435 (49.6%) adult patients. Similarly, 273 (33.3%) of the 819 tethered cord procedures were performed in adults, as were 307 (32.9%) of 933 Chiari decompressions.

CONCLUSIONS

The Health Facts database offered another option for studying care delivery and utilization in patients aging with spina bifida. The median age of this population has now reached early adulthood, and a significant number of neurosurgical procedures were performed in adults. An abrupt drop in the rate of encounters occurred at 21 years of age, possibly reflecting transition issues such as access-to-care problems and lack of coordinated care.

In Brief

The life expectancy of patients with spina bifida continues to increase, escalating the need for coordinated adult care. A large, national data set was used to estimate the burden of neurosurgical care in this population. The neurosurgical needs of patients with spina bifida were found to remain high into adulthood as those patients continued to require neurosurgical interventions, despite an abrupt drop in encounters after 21 years of age. This study has underscored the unmet need of coordinated neurosurgical care of adults with spina bifida.

Spina bifida is a relatively common birth defect affecting approximately 3.17 to 3.5 per 10,000 live births in the US each year.1,2 As care of children with spina bifida continues to improve, the 25-year survival rate has increased 82.5%, thereby emphasizing the need for improved care coordination as these children become adults.3 While healthcare utilization and surgical interventions have been well described in the pediatric population, little is known about the adult spina bifida population. A previous study used the National Spina Bifida Patient Registry (NSBPR) to describe the age distribution of surgeries up to young adulthood, dividing these into 6 major categories: gastrointestinal, neurological, orthopedic, dermatological, urological, and other.4 The authors showed that surgical interventions were taking place in patients 25 years of age and older; however, these were primarily dermatological, gastrointestinal, or urological in nature, with this age group accounting for only 2% of the 10,269 neurological procedures for the entire study cohort.4 Additionally, only 8.5% of patients in their cohort were 25 years of age or older, limiting a more granular and accurate description of neurosurgical interventions occurring in the adult population.4 The NSBPR has provided high-quality data that have led to many impactful publications.5 However, it may not reflect the experience of patients in the general community or at smaller, less-specialized centers.

Little is known about patient utilization of care and the rate of neurosurgical intervention in adults with spina bifida. The Health Facts database (Cerner Corp.) is well positioned to fill this gap in knowledge. Many studies have used the Healthcare Cost and Utilization Project (HCUP) National (Nationwide) Inpatient Sample (NIS) from the Agency for Healthcare Research and Quality for population-based estimates from administrative databases. Leveraging electronic health record (EHR)–generated databases can increase the granularity and flexibility of health services research. A group compared the Health Facts database with the HCUP NIS and found them to have comparable patient distribution statistics, lending credence to the validity of the Health Facts estimates.6 This database offers prime opportunity for hypothesis-generating work that can then be expanded on with focused institutional studies. The Health Facts database has been used previously to answer similar clinical questions in other fields of medicine.79 Better understanding of the neurosurgical needs of adults with spina bifida will help to improve their care.

Methods

Database

The patient cohort used in the analysis was derived from the Health Facts database, which is a de-identified proprietary data set abstracted from all Cerner EHRs. At the time of this study, it included 69 million unique patients with more than 500 million encounters at 664 facilities.10 We utilized the Health Facts 2018 version of the database. These data are from facilities within the US. The Health Facts database is a large and underexplored clinical database that our institution has access to under a data use agreement. Previous work has shown that the Health Facts database is comparable to the HCUP NIS.6 Additionally, there are data from multiple major pediatric referral hospitals as well as a variety of primarily adult health centers ranging from academic medical centers to community hospitals. This diversity of input provides an excellent representation of the healthcare experience for a large proportion of the US population.

Technical Exclusions and Validation

Validation techniques using technical exclusions were applied to the raw data to filter out duplicate or incomplete records. Patients were included if they were aged 0 to 90 years, had been admitted between 2000 and 2017, and had valid admission and discharge times with a length of stay > 0 minutes. Encounters mapped to > 1 unique patient as well as those without any documented diagnosis code were excluded in the validation round. A previous study validated an earlier version of the data set.6 As an additional check in the de-identified data set, each health system is aware of its own system identifier; therefore, we were able to confirm on institutional review that our encounter numbers were comparable to those listed in the Health Facts data set.

Patient Cohorts

Data filters were applied to narrow the cohort from the base population to the desired spina bifida population. The 12 ICD-9 codes (741, 741.0, 741.00–03, 741.9, 741.90–93, and 742.5) and 18 ICD-10 codes (Q05, Q05.0–9, Q06.0–4, and Q06.8–9) for all types of spinal dysraphism were applied to the base population. Most of these codes are for spina bifida with regional descriptors; however, we did include several additional codes for other types of spinal dysraphism such as diastematomyelia. These additional codes account for only a small portion of the data set. Specific Current Procedural Terminology (CPT)–4 codes for hydrocephalus procedures (62201, 62223, 62225, and 62230), spinal cord untethering (63200 and 63272), and Chiari decompression (61343) were also applied to define the cohort of patients who underwent neurosurgical intervention. For the purposes of comparative analysis, the spina bifida cohort was then split into a pediatric cohort (aged 2–18 years) and an adult cohort (aged 19–90 years). Sex, race and ethnicity, census region, and payer source were collected from the database for baseline group comparisons between the pediatric and adult patients.

Statistical Analysis

Descriptive statistics for encounters and interventions were performed by pediatric versus adult cohorts. The data were broken up into smaller age groups to examine variability in encounters and neurosurgical interventions. Temporal trends were analyzed across the study period. Subgroup analysis of those encounters with complete admission type and major diagnostic category (MDC) was undertaken to identify patterns in care settings as well as admission diagnoses (Supplementary Table 1).

Results

After technical exclusions were applied, the base population consisted of 37.1 million patients with 214.2 million encounters. Age, admission year, and spina bifida–related ICD code data filters were applied, resulting in a final spina bifida cohort of 24,764 patients with 101,645 encounters (Fig. 1). The most populous codes in the data set were those with less specificity. For example, ICD-9 codes 741.00 (spina bifida with hydrocephalus, unspecified region) and 741.90 (spina bifida without mention of hydrocephalus, unspecified region) comprise approximately 60% of the data set. There was an average of 3.1 encounters per patient in the adult cohort compared with 5.4 encounters per patient in the pediatric cohort. Patient demographics are detailed in Table 1. There was a notably larger proportion of females in the adult cohort compared with the pediatric cohort, 62.9% versus 51.4%, respectively. This is consistent with prior studies, as a larger number of young males are lost to follow-up.11 A smaller proportion of pediatric patients identified as White (57.6%) compared with the adult cohort (75.4%). Interestingly, the population of Hispanic patients seems underrepresented throughout the entire cohort, given that reported data have shown the rate of spina bifida in the Hispanic population to be significantly higher than other groups over the past decade.1,12

FIG. 1.
FIG. 1.

Data flow diagram.

TABLE 1.

Patient characteristics

Pediatric (2–18 yrs)Adult (19–90 yrs)Totalp Value
Pts, n (%)11,123 (44.9)13,641 (55.1)24,764
Pt encounters, n (%)*60,027 (59.1)41,618 (40.9)101,645
Sex, n (%)<0.001
 F5722 (51.4)8580 (62.9)14,302
 M5401 (48.6)5054 (37.1)10,455
 Unspecified0 (0.0)7 (0.05)7
Race & ethnicity, n (%)<0.001
 African American1,251 (11.2)1,499 (11.0)2,750
 Asian/Pacific Islander370 (3.3)127 (0.9)497
 Multiracial113 (1.0)27 (0.2)140
 White6,403 (57.6)10,288 (75.4)16,691
 Hispanic342 (3.1)112 (0.8)454
 South Asian2 (0.02)0 (0.0)2
 Native American81 (0.7)113 (0.8)194
 Unspecified2,561 (23.0)1,475 (10.8)4,036
Census region, n (%)<0.001
 Midwest2,774 (24.9)2,900 (21.3)5,674
 Northeast1,577 (14.2)2,919 (21.4)4,496
 South3,663 (32.9)5,382 (39.5)9,045
 West3,109 (28.0)2,440 (17.9)5,549
Payer source per encounter, n (%)<0.001
 Commercial10,426 (17.4)6,174 (14.8)16,600
 Government33,965 (56.6)22,929 (55.1)56,894
 Self-pay1,083 (1.8)1,539 (3.7)2,622
 Other6,529 (10.9)3,884 (9.3)10,413
 Unspecified8,024 (13.4)7,092 (17.0)14,602
Spina bifida diagnosis, n<0.001
 Unspecified level67,55645,858113,414
 Cervical region7318181,549
 Thoracic region2,7691,1903,959
 Lumbar region22,4735,58128,054
 Sacral region9355191,454
 Other congenital spinal abnormality5,5082,7758,283
Neurosurgical interventions, all pts, n<0.001
 Chiari decompression626307933
 CSF shunt2,3582,3374,695
 ETV12098218
 Tethered spinal cord release546273819

ETV = endoscopic third ventriculostomy; pts = patients.

All types of clinical encounters, including clinic outpatient, inpatient, emergency department, and same-day surgery.

Encounters may have more than one associated diagnosis; multiple ICD-9 and ICD-10 codes are collapsed into each diagnosis category.

The number of patient encounters related to spina bifida was shown to sharply decrease around 19 to 21 years of age, then continued to steadily decrease as age increased (Fig. 2). Patient encounters have been recorded in adults with a spina bifida diagnosis code extending well into the 7th and 8th decades of life. The majority of patient encounters were recorded after 2008 as the Health Facts database underwent rapid expansion at that time. The number of yearly encounters in the Health Facts database stabilized after 2013, and the temporal trend in our data likely reflects the growth of the database rather than an independent increase in spina bifida–related encounters (Fig. 3).

FIG. 2.
FIG. 2.

Bar graph showing patient encounters with a spina bifida–related diagnosis, separated by age group and sex. Figure is available in color online only.

FIG. 3.
FIG. 3.

Line graph showing patient encounters with a spina bifida–related diagnosis over time, separated by pediatric versus adult patients. Figure is available in color online only.

In subgroup analysis of encounters in which both an admission/encounter type and an MDC for the admission diagnosis were present, only 22.7% of the total encounters contained both. In the adult cohort, encounters were elective in 56.3%, urgent in 6.1%, and emergency in 37.5%. In the pediatric cohort, 77.7% encounters were elective, 4.1% urgent, and 18.2% emergency (Fig. 4). The sex distribution in each setting remains relatively constant in the pediatric cohort (51% female); however, in the adult cohort, an increase in the proportion of males seeking emergency care compared with elective care was seen (Table 2). The 5 most frequent MDCs for all encounters combined were nervous system, kidney and urinary tract, musculoskeletal and connective tissue, skin and subcutaneous tissue, and other contacts with health services, which is a category that includes rehabilitation services (Supplementary Table 2). The breakdown of admission diagnosis MDCs did not differ by sex across any of the encounter types. The most frequent admission diagnosis MDCs, separated by encounter type and age cohort, are shown in Supplementary Tables 3 and 4. In the pediatric cohort, the MDC distribution is similar across all encounter types, with nervous system and kidney/urinary tract diagnoses making up the bulk of the reported concerns. In the adult cohort, kidney and urinary tract diagnoses overtake those of the nervous system in urgent and emergency encounters. Skin disorders become more prevalent in the adult cohort compared with the pediatric cohort.

FIG. 4.
FIG. 4.

Pie charts showing pediatric and adult patient encounter types. Figure is available in color online only.

TABLE 2.

Encounter types by female sex

ElectiveUrgentEmergencyp Value
Pediatric, n (%)9053 (51.4)481 (50.9)2118 (51.9)0.23
Adult, n (%)6428 (58.0)697 (59.8)4284 (55.4)0.01

Percentages are the proportion of female patients within each encounter type.

CPT codes began to be regularly recorded in the Health Facts database in 2013, meaning that our data regarding neurosurgical interventions are mostly derived from 2013 to 2017. The sex distribution was similar between cohorts, with 54.6% females in the adult group and 52.4% females in the pediatric group. Using patients between 2013 and 2017 as the denominator, 1.48% of adults and 4.65% of children underwent a neurosurgical intervention during the study period. The estimated intervention percentage is approximately 3.14 times higher in the pediatric cohort compared with adults. The number of neurosurgical procedures (hydrocephalus treatment, spinal cord untethering, and Chiari decompression) occurring in pediatric and adult patient encounters using a spina bifida–related diagnosis code over time is shown in Fig. 5. A variety of procedures were recorded in adults well into their 40s and 50s, including Chiari decompression. The distribution of endoscopic third ventriculostomy was more restricted, with all procedures occurring in patients between the ages of 10 and 39 years. When neurosurgical interventions within spina bifida encounters are broken down by age, an abrupt decrease in frequency after age 20 years is seen (Fig. 6). There remains a consistent frequency of interventions for patients in their 20s and 30s, after which there is a low number of interventions.

FIG. 5.
FIG. 5.

Line graph showing neurosurgical procedures that occurred in patient encounters with a spina bifida–related diagnosis over time. Figure is available in color online only.

FIG. 6.
FIG. 6.

Component bar graph showing specified neurosurgical procedures that occurred in patient encounters with a spina bifida–related diagnosis, separated by age group. ETV = endoscopic third ventriculostomy. Figure is available in color online only.

Discussion

Adult Utilization of Neurosurgical Care Over Time

The primary goal of our study was to assess healthcare utilization by adults with spina bifida using a large database, in particular, the frequency of neurosurgical interventions. Our results demonstrate that, while adults utilized care at a much lower frequency than pediatric patients, they continued to undergo neurosurgical interventions as their age increased. Previous studies of patient data acquired from institutional databases have shown similar trends. An institutional database analysis from the University of Alabama and Children’s Hospital of Alabama showed a steady decrease in shunt revision rates as age increased, with the exception of a small increase during the early teenage years.13 However, in that cohort, shunt revisions were recorded for patients up to the age of 43 years, demonstrating that while rates decreased with age, adults with spina bifida continued to require neurosurgical care.13 Recent cross-sectional analysis of a population-based cohort in Sweden showed that the younger cohort (< 46 years) had a higher prevalence of neurological conditions such as hydrocephalus, tethered spinal cord, and Chiari II malformation, suggesting that as this cohort continues to age, they will require higher levels of neurosurgical care than the current, older, spina bifida population.11 As care of patients with spina bifida continues to advance, we expect to see a shift in the demographics toward more patients surviving into middle and late adulthood with more complex needs compared with previous generations.

Need for Pediatric-to-Adult Transitional Care

Interestingly, we found that adults use emergency services for a significantly greater proportion of their care compared with the pediatric patients, in whom more than 75% of encounters are elective. One possible explanation for the much higher use of emergency services for adults is a lack of continuity in their routine medical care. There remains an unmet need for bridging the gap between the well-coordinated, multidisciplinary care present in pediatric spina bifida and the fragmented care these patients receive in adulthood. A survey of American Society of Pediatric Neurosurgeons members found that 80% of respondents participated in a multidisciplinary clinic for pediatric spina bifida.14 Differences emerged when looking at the transition period in those multidisciplinary clinics: 33% see pediatric and adult patients, 33% have a formal transition program, and 33% had no transition program.14 The impact of successful transition is significant, as young adults with spina bifida who have not transitioned to adult care have much greater usage of emergency and inpatient care.15

Surveys of young adults with spina bifida have shown that social participation declines in young adulthood.16 This decrease in social participation coincides with a decreasing number of primary care physician visits, which is especially notable in young males.17 Despite decreasing primary care visits, hospitalization rates increased with age from the young-adulthood to middle-adulthood period.17 HCUP, data-tracking ICD-9 codes connected to hospital admissions also demonstrated a steady increase from 2001 to 2010 in the codes related to myelomeningocele.18 Coordinated care is important not only for patient-level outcomes but also for controlling healthcare costs; children with spina bifida have 13 times higher healthcare expenditures, and adults with spina bifida have 3 to 6 times higher expenditures, than children or adults without spina bifida.19

Transition Models and Performance Metrics

A complete transitional care plan and clinic should involve a multidisciplinary effort including primary, neurosurgical, urological, orthopedic, physiatry, gastrointestinal, and cognitive/psychological care, and women’s health and social work.20 Reproductive health and sexuality are not readily discussed in many of the multidisciplinary clinics based in pediatric facilities, and, therefore, transition programs play a critical role in this regard.21 Le and Mukherjee have described 5 key elements for a transition program: 1) preparation, 2) flexible timing, 3) coordination of care, 4) transition clinic visits, and 5) healthcare providers interested in the long-term care of adults with spina bifida.20 Individualization of a transition plan is important as there exists a wide range of functional levels in the spina bifida population. The spina bifida program at Children’s of Alabama has seen success with a Lifetime Care Model, which includes specific goals for each stage from prenatal care to the final transition into an adult clinic.22 Several authors have suggested taking lessons learned from the lifetime management of cystic fibrosis, which found success with modifications of the Chronic Care Model.23,24 Additionally, the use of nurse care coordinators to assist patients and families has been shown to increase patient confidence in transitioning to adult care.25

To measure the successes or failures of spina bifida transition clinics, it is important to have structured outcome measures. Fremion et al. have made recommendations for specific previously validated tools to be used in the “triple aim” framework consisting of patient experience, population health, and cost and access to care.23,26 Data derived from such measures will be critical for driving quality improvement initiatives.

The importance of pediatric-to-adult transitional care in patients with spina bifida is not a new concept and the need is well recognized. More data on utilization, patient-level barriers to care, social support, and other specialized-care needs in adulthood are necessary to help guide and improve transition programs.

Limitations

Our study is retrospective in nature and employs a large database accessed from Cerner EHRs, meaning that it relies on the information that has been input by providers. Quality checks are performed during the data gathering and analysis phase; however, the original data quality may be variable. This database also covers only those hospitals using the Cerner EHR system.

Conclusions

The Health Facts database offers another option for studying care delivery and utilization in the aging spina bifida patient population. The median age of this population is now in early adulthood, and a significant number of neurosurgical procedures are performed in adults. An abrupt drop in the rate of encounters occurs around the age of 21 years, possibly reflecting transition issues such as access-to-care problems and lack of coordinated care.

Acknowledgments

Project support was funded internally at Children’s Mercy Kansas City.

Disclosures

The authors report no conflict of interest concerning the materials or methods used in this study or the findings specified in this paper.

Author Contributions

Conception and design: Domino, Lundy, Partington. Acquisition of data: Glynn. Analysis and interpretation of data: Domino, Glynn, Partington. Drafting the article: Domino, Lundy. Critically revising the article: all authors. Reviewed submitted version of manuscript: Domino, Lundy, Partington. Approved the final version of the manuscript on behalf of all authors: Domino. Statistical analysis: Domino, Glynn. Administrative/technical/material support: Glynn, Partington. Study supervision: Partington.

Supplemental Information

Online-Only Content

Supplemental material is available with the online version of the article.

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    Kelly MS, Thibadeau J, Struwe S, Ramen L, Ouyang L, Routh J. Evaluation of spina bifida transitional care practices in the United States. J Pediatr Rehabil Med. 2017;10(3-4):275281.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 22

    Hopson B, Rocque BG, Joseph DB, Powell D, McLain ABJ, Davis RD, et al. The development of a lifetime care model in comprehensive spina bifida care. J Pediatr Rehabil Med. 2018;11(4):323334.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 23

    Fremion E, Morrison-Jacobus M, Castillo J, Castillo H, Ostermaier K. A chronic care model for spina bifida transition. J Pediatr Rehabil Med. 2017;10(3-4):243247.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 24

    Sawyer SM, Macnee S. Transition to adult health care for adolescents with spina bifida: research issues. Dev Disabil Res Rev. 2010;16(1):6065.

  • 25

    Seeley A, Lindeke L. Developing a transition care coordination program for youth with spina bifida. J Pediatr Health Care. 2017;31(6):627633.

  • 26

    Prior M, McManus M, White P, Davidson L. Measuring the “triple aim” in transition care: a systematic review. Pediatrics. 2014;134(6):e1648e1661.

Supplementary Materials

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Illustration from Pettersson et al. (pp 467–475).
  • FIG. 1.

    Data flow diagram.

  • FIG. 2.

    Bar graph showing patient encounters with a spina bifida–related diagnosis, separated by age group and sex. Figure is available in color online only.

  • FIG. 3.

    Line graph showing patient encounters with a spina bifida–related diagnosis over time, separated by pediatric versus adult patients. Figure is available in color online only.

  • FIG. 4.

    Pie charts showing pediatric and adult patient encounter types. Figure is available in color online only.

  • FIG. 5.

    Line graph showing neurosurgical procedures that occurred in patient encounters with a spina bifida–related diagnosis over time. Figure is available in color online only.

  • FIG. 6.

    Component bar graph showing specified neurosurgical procedures that occurred in patient encounters with a spina bifida–related diagnosis, separated by age group. ETV = endoscopic third ventriculostomy. Figure is available in color online only.

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    Le JT, Mukherjee S. Transition to adult care for patients with spina bifida. Phys Med Rehabil Clin N Am. 2015;26(1):2938.

  • 21

    Kelly MS, Thibadeau J, Struwe S, Ramen L, Ouyang L, Routh J. Evaluation of spina bifida transitional care practices in the United States. J Pediatr Rehabil Med. 2017;10(3-4):275281.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 22

    Hopson B, Rocque BG, Joseph DB, Powell D, McLain ABJ, Davis RD, et al. The development of a lifetime care model in comprehensive spina bifida care. J Pediatr Rehabil Med. 2018;11(4):323334.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 23

    Fremion E, Morrison-Jacobus M, Castillo J, Castillo H, Ostermaier K. A chronic care model for spina bifida transition. J Pediatr Rehabil Med. 2017;10(3-4):243247.

    • PubMed
    • Search Google Scholar
    • Export Citation
  • 24

    Sawyer SM, Macnee S. Transition to adult health care for adolescents with spina bifida: research issues. Dev Disabil Res Rev. 2010;16(1):6065.

  • 25

    Seeley A, Lindeke L. Developing a transition care coordination program for youth with spina bifida. J Pediatr Health Care. 2017;31(6):627633.

  • 26

    Prior M, McManus M, White P, Davidson L. Measuring the “triple aim” in transition care: a systematic review. Pediatrics. 2014;134(6):e1648e1661.

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