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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 Characteristics	Value	Overall
Sex	Male	126 (42.1%)
	Female	173 (57.9%)
Rural residence *		63 (21.1%)
Primary care provider	Pediatrician	38 (12.7%)
	GP	136 (45.5%)
	Pediatrician and GP	68 (22.7%)
	None	57 (19.1%)
Age at time of Spina bifida procedure (days)	0 - 14	227 (75.9%)
	15 - 30	11 (3.7%)
	31 - 180	33 (11.0%)
	181 - 365	18 (6.0%)
	366+	10 (3.3%)
Previous urologic surgery		89 (29.8%)
Mitrofanoff		10 (3.3%)
Nephrectomy		<=10
Urinary tract drainage		<=5
Stoma revision		16 (5.4%)
Uretric reimplantation		40 (13.4%)
Stone surgery		22 (7.4%)
Bladder augmentation		25 (8.4%)
Bladder neck repair		9 (3.0%)
Urinary diversion		39 (13.0%)
Cecostomy		6 (2.0%)
Ureteral dilation		9 (3.0%)
Age at which care transitioned**	16	13 (12.3%)
	17	43 (40.6%)
	18	31 (29.2%)
	19	10 (9.4%)
	20 or 21	9 (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: Outcomes	Year 1 (age 16)Pediatric Care	Average of Years 4-6Adult Care
Outcome	Mean (SD)	Mean (SD)	p-value
Primary outcome	0.96 (1.94)	1.18 (2.15)	0.0918
Unplanned ER visits	0.7 (1.43)	0.98 (1.90)	0.0036
Hospital admissions	0.25 (0.74)	0.18 (0.44)	0.1096
Emergency surgical procedures	0.01 (0.23)	0.02 (0.1)	0.0171
GP visits	1.91 (3.43)	2.65 (3.04)	<.0001
Specialist consults	0.28 (0.57)	0.27 (0.4)	0.9453
Diagnostic imaging	0.07 (0.4)	0.09 (0.22)	0.0032
Urologic surgery	0.1 (0.65)	0.06 (0.27)	0.5115
Total cost of health care	12,624.64 (38,175.81)	8,708.22 (18,858.4)	0.0338

Table 3 – Multivariable Analysis:Primary outcome	Relative Risk	CI	p-value
Sex (ref= female)	0.90	0.65-1.24	0.5237
Rural residence	1.78	1.30-2.44	0.0003
Previous surgery	1.11	0.81-1.53	0.5133
SB procedure within 14-days of birth	1.28	0.88-1.88	0.1968
Pediatrician primary care provider	1.27	0.91-1.77	0.1567
Number of primary outcome events in baseline year	1.16	1.11-1.22	<.0001
Healthcare cost
Sex (ref= female)	0.94	0.69-1.27	0.6691
Rural residence	1.15	0.80-1.64	0.4509
Previous surgery	1.91	1.41-2.57	<.0001
SB procedure within 14-days of birth	1.82	1.12-2.96	0.016
Pediatrician primary care provider	2.14	1.53-2.99	<.0001
Total Healthcare cost (in 1000s) in baseline year	1.01	1.00-1.01	<.0001

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