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The costs of transition of Spina Bifida Care in Ontario: A retrospective population based cohort study comparing outcomes and health care costs longitudinally from adolescence into adulthood between 2004 to 2021
Matthew Playfair, MBCHB1, J Andrew McClure, BA, MSc1, Britney Le, BSc, MSc2, Peter Wang, BSc, MD, MEd, FRCS1, Blayne Welk, MD, FRCSC, MSC1, Sumit Dave, MD, MCh, MSc, FRCSC1.
1Western University, London, ON, Canada, 2ICES Institute for Clinical Evaluative Sciences, London, ON, Canada.

BACKGROUND: Transition from pediatric multidisciplinary to adult care results in a significant change in nature and intensity of care provided to complex spina bifida (SB) patients. The goal of this study is to track a single cohort of SB patients through this transition, describing planned and unplanned healthcare utilization in this population before and after transition.
METHODS: Through a retrospective population-based cohort study, newborn spina bifida patients requiring neurosurgery born in Ontario between from 1988- and 1999 requiring neurosurgery were studied using routinely collected data analysed at ICES. SB patients entered the study at 16 years and were longitudinally followed to 22 years. A composite primary outcome, including unplanned emergency room visits, hospitalizations and emergency surgical procedures, was compared for the same individual before and after transition to adult care. Secondary outcomes included these variables individually and measured the estimated total health care costs. Comparisons were made between the pediatric baseline year (age 16) to the first three years of adulthood (ages 19-21), with age 17-18 years being classified as years of transition.
RESULTS: In the 299 SB patients followed, no significant differences in health care utilization were noted from pediatric to adult care for the composite primary outcome (p=0.09). Emergency room visits (p=0.004) increased following transition into adult care with a mean of 0.98 (SD 1.9) visits, as compared to 0.7 visits (SD 1.43) in the baseline pediatric year (p=0.004). Similarly, unplanned surgery also increased with a mean of 0.02 (SD 0.1) vs a mean of <0.02 (SD 0.23) during the pediatric year (p=0.02). Despite this, the estimated individual total cost of care declined after transition of care, with a mean cost of $8,708/year (SD 18,858) versus the pediatric mean of $12,625/year (SD 38,176) (p=0.03). Further, multivariable analysis identified rural residence (RR 1.78, CI 1.30-2.44) and previous urologic surgery (RR 1.91, CI 1.41-2.57) as significant predictors of increased need for emergent care and overall healthcare costs respectively.
CONCLUSION: SB patients in Ontario have higher rates of emergency room usage and unplanned surgery after transition to adult care. Patient complexity and cost during pediatric care is likely a predictor of future healthcare utilization and cost, and may be an indication of need for specialist referral. While transition does not appear to drive an increase in healthcare costs, improvements in adult SB care, particularly for complex and rural patients with poor access to care, may decrease the requirement for emergent care.
Table 1: Cohort CharacteristicsValueOverall
SexMale126 (42.1%)
Female173 (57.9%)
Rural residence *63 (21.1%)
Primary care providerPediatrician38 (12.7%)
GP136 (45.5%)
Pediatrician and GP68 (22.7%)
None57 (19.1%)
Age at time of Spina bifida procedure (days)0 - 14227 (75.9%)
15 - 3011 (3.7%)
31 - 18033 (11.0%)
181 - 36518 (6.0%)
366+10 (3.3%)
Previous urologic surgery89 (29.8%)
Mitrofanoff10 (3.3%)
Urinary tract drainage<=5
Stoma revision16 (5.4%)
Uretric reimplantation40 (13.4%)
Stone surgery22 (7.4%)
Bladder augmentation25 (8.4%)
Bladder neck repair9 (3.0%)
Urinary diversion39 (13.0%)
Cecostomy6 (2.0%)
Ureteral dilation9 (3.0%)
Age at which care transitioned**1613 (12.3%)
1743 (40.6%)
1831 (29.2%)
1910 (9.4%)
20 or 219 (8.5%)
* Rural Residence missing for n=1 ** Percentage of patients with a pediatrician (n = 106)** Percentage of patients with a pediatrician (n = 106)

Table 2: OutcomesYear 1 (age 16)Pediatric CareAverage of Years 4-6Adult Care
OutcomeMean (SD)Mean (SD)p-value
Primary outcome0.96 (1.94)1.18 (2.15)0.0918
Unplanned ER visits0.7 (1.43)0.98 (1.90)0.0036
Hospital admissions0.25 (0.74)0.18 (0.44)0.1096
Emergency surgical procedures0.01 (0.23)0.02 (0.1)0.0171
GP visits1.91 (3.43)2.65 (3.04)<.0001
Specialist consults0.28 (0.57)0.27 (0.4)0.9453
Diagnostic imaging0.07 (0.4)0.09 (0.22)0.0032
Urologic surgery0.1 (0.65)0.06 (0.27)0.5115
Total cost of health care12,624.64 (38,175.81)8,708.22 (18,858.4)0.0338

Table 3 Multivariable Analysis:Primary outcomeRelative RiskCIp-value
Sex (ref= female)0.900.65-1.240.5237
Rural residence1.781.30-2.440.0003
Previous surgery1.110.81-1.530.5133
SB procedure within 14-days of birth1.280.88-1.880.1968
Pediatrician primary care provider1.270.91-1.770.1567
Number of primary outcome events in baseline year1.161.11-1.22<.0001
Healthcare cost
Sex (ref= female)0.940.69-1.270.6691
Rural residence1.150.80-1.640.4509
Previous surgery1.911.41-2.57<.0001
SB procedure within 14-days of birth1.821.12-2.960.016
Pediatrician primary care provider2.141.53-2.99<.0001
Total Healthcare cost (in 1000s) in baseline year1.011.00-1.01<.0001

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