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Background
As part of the CDC National Spina Bifida Registry (NSBPR), urologic management and continence information is collected annually via patient/parent questionnaire (self-report) and/or review of provider notes in the hospital electronic medical record (EMR). Anecdotally, we have noted discrepancies between self-report and EMR for these prospectively collected data. We examine agreement between these two data sources to identify potential demographic or medical factors that might contribute to the reporting/documentation of discordant information.
Methods
Patients enrolled in the NSBPR who had an annual visit between 12/1/14-1/31/16 were identified. Hospital EMRs were reviewed and data from urology provider notes was collected and categorized into 10 corresponding NSBPR self-reported urologic domains. Due to numerous answer options in NSBPR for bladder and bowel daytime incontinence (BBDI), we stratified BBDI into two categories: “wet” (reports of daily or weekly incontinence) and “dry” (reports of monthly, less than monthly, or no incontinence). Complete pairs of self -report and EMR were identified, and total agreement (number of agreeing pairs/number of complete pairs) was reported for each domain and for the two stratified BBDI categories. Strength of agreement was measured using a kappa statistic, with greater than 0.90 considered good agreement. Continence domains were assessed in children ≥5 and in younger toilet trained children. Analyses were further stratified by ethnicity, diagnosis and type of bladder management.
Results
Our cohort included 176 patients (median age 11.4years, range 0.4-24.1) 52% female, 80% white and 27% Hispanic. Diagnoses included Myelomeningocele (MM) (41%), Fatty filum (30%) and Lipoma (19%). Bladder management included clean intermittent catheterization (CIC) in 47%, volitional voiding in 38% and no established program in 14%. Total agreement between self-report and EMR was greater than 90% for 8/10 domains (range 69-99%) (Table 1). For the documentation of daytime incontinence, agreement varied by patient diagnosis: 58% agreement for urinary incontinence in MM vs 78% in non-MM patients and 62% agreement for stool incontinence in MM vs 83% in non-MM patients. Similarly, agreement in documentation varied by bladder management program: 57% for CIC vs 78% for voiders. For the BBDI categories, total agreement was higher when stratifying into “wet” vs “dry” than when analyzing each category in the domain. br />Conclusions
Overall we found good agreement between self-reported NSBPR urologic domains and the hospital EMR. Agreement increased when patients were grouped into only “wet” and “dry” categories. Lower rates of agreement for the continence domains were more likely in more complex patients: MM and those on CIC. Consideration should be given to use of structured provider notes that more closely reflect the NSBPR self-reported domains. Future studies are needed to determine whether provider or patient factors contribute to discordant reporting and the broader implications of discordant reporting on the assessment of urologic outcomes in the NSBPR.
Table 1. Agreement between self-report and EMR for 10 urologic NSBPR domains

Data parameter/Urologic domain N=176	Complete data pairs, n (%)	Total agreement	Kappa coefficient (95% CI)
Bladder Management Type*	172 (98)	0.98	0.97 (0.94-1.0)
Instructed to Perform Timed Voiding/Catheterization	138 (78)	0.96	0.92 (0.85-0.98)
Presence of Bladder Medications Prescribed If Yes, Groups of Meds Prescribed*	150 (85) 75 (43)	0.97 0.92	0.93 (0.87-0.99) 0.74 (0.55-0.93)
Frequency of Daytime Urinary Incontinence*	146 (83)	0.69	0.53 (0.43-0.63)
Presence of Nighttime Urinary Incontinence	92 (52)	0.90	0.79 (0.65-0.92)
Undergarment Worn During Day*	60 (34)	0.93	0.87 (0.75-0.99)
Currently on Bowel Program	156 (89)	0.96	0.91 (0.84-0.98)
Type of Bowel Management*	150 (85)	0.99	0.97 (0.92-1.0)
Oral Bowel Medications Taken*	141 (80)	0.91	0.82 (0.72-0.92)
Frequency of Daytime Stool Incontinence*	95 (54)	0.74	0.54 (0.41-0.67)
Wet vs Dry for Daytime Urinary Incontinence	146 (83)	0.86	0.68 (0.55-0.80)
Wet vs Dry for Daytime Stool Incontinence	95 (54)	0.89	0.70 (0.53-0.88)

*domain has multiple response options- any disagreement counted