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Utilization of a patient portal questionnaire in the pediatric spina bifida population to capture NSBPR data points
Kiersten M. Craig, MD/MSE1, Katie Mueller, APRN, CNP1, Thomas FitzGibbon, Jr., MD2, Andrew Strine, MD/MPH1, Eugene Minevich, MD1, Bob Defoor, Jr., MD1, Pramod Reddy, MD1, Brian VanderBrink, MD1, Michael Daugherty, MD1.
1Cincinnati Children's Hospital, Cincinnati, OH, USA, 2Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.

Title: Utilization of a patient portal questionnaire in the pediatric spina bifida population to capture NSBPR data points
Background: The National Spina Bifida Patient Registry (NSBPR) collects data annually for all patients included within the registry. There are many of these data points that can be considered patient reported outcomes. However, often most of the information reported within the registry is through the provider's documentation and does not necessarily include the patient's or family's perspective. The adoption of EHR patient portals allows new modalities to communicate with patients and their families. Understanding acceptance by parents to use these modalities and their willingness to respond to surveys can help providers choose optimal ways in which to deliver a questionnaire.
Methods: A patient-entered questionnaire was built within our EHR to capture data points that are part of the annual NSBPR survey. All patients seen within our institution's multidisciplinary spina bifida clinic since 6/1/2020 were reviewed. A patient portal message with the spina bifida questionnaire attached was sent to all patients that had an activated patient portal account and spoke English as a primary language in the week preceding the clinic visit. The questionnaire was built with nested logic to limit unnecessary questions for families. Information was collected regarding whether the message was read and if the questionnaire was completed.
Results: There was a total of 353 patients that were seen in the spina bifida clinic during the study period.304 (85.4%) had an activated patient portal account. 26 of these patients did not receive a survey due toEnglish not being the primary language. A total of 601 questionnaires were sent prior to the clinic visit. Of these surveys, 455 (75.7%) were read and 288 (47.9%) were completed. 63.2% of families that read the message went on to complete the survey. For the messages that were not read initially, at the follow-up visit 17.4% filled out the questionnaire. For the families that read the initial message only, 39.7% filled out the questionnaire at their next visit. Of those that filled out the questionnaire initially, 69.4% filled out the questionnaire at the next visit.
Conclusion: Questionnaires sent through the electronic health record have good utilization in the spina bifida population. There is a proportion of families that did not read the message or fill out the survey initially that subsequently filled out the questionnaire at follow-up visit. This strategy offers the opportunity to gain more information from the patients and families themselves. This may potentially lead to more reliable and accurate data collection for this national registry.
Figure 1. Example of questionnaire output from a patient's documentation


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