Transition from Pediatric to Adult Centered Care for Youth Living with Spina Bifida

Introduction
Thank you for your interest in the transition from pediatric to adult care for youth with spina bifida (SB) quality improvement project. Participating practices will have a unique opportunity to assess their current transition processes to facilitate transition to an adult provider for youth with SB.

This project is being implemented by the American Academy of Pediatrics (AAP) via a cooperative agreement (grant number NU38OT000282) with the Centers for Disease Control and Prevention. Both the Spina Bifida Association and Got Transition are partners in this project.

The American Academy of Pediatrics is recruiting up to 9 teams to participate in this project. At a minimum, teams must include a lead physician from both a pediatric (spina bifida) clinic and an adult provider (e.g., internal medicine, physical medicine & rehabilitation, or urology) who is accepting youth with spina bifida as new patients.

Note: This application requires answers on behalf of both the pediatric and adult providers. The AAP will accept the first 9 applicants who complete the application and meet the criteria for participation.

Pediatric primary care practices are being recruited. Practices that meet the following criteria will be given enrollment preference:

 - Utilization of an electronic health record.
 - Serve a population of at least 200 patients living with spina bifida per year.
 - Utilization of a pediatric transition readiness assessment.
 - Ability to establish a partnership between a pediatric (spina bifida) clinic and at least 1 adult provider (e.g., internal medicine, physical medicine & rehabilitation, or urology) who is accepting youth with spina bifida as new patients.
NOTE: this application requires responses from both the pediatric (spina bifida) clinic and adult provider
 - Ability to onboard local quality improvement team members and obtain buy-in from practice administration or employer for the duration of the 11-month project (8/2019 – 7/2020).

Please direct questions to Nkem Chineme, MPH (nchineme@aap.org or 630-626-6342) OR Rachel Daskalov, MHA (rdaskalov@aap.org or 630-626-6063).

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* 1. Please enter contact information in the boxes below for the lead physician from the pediatric (spina bifida) clinic:

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* 2. Are you a practicing primary care pediatrician?

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* 3. Number of individuals living with spina bifida seen per year?

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* 4. Have lead physicians participated in a practice-based quality improvement activity previously?

  Yes No
Pediatric (spina bifida) clinic
Adult clinic

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* 5. Please briefly describe why you would like to participate in this project.

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* 6. Does your clinic/practice utilize an electronic health record system?

  Yes No
Pediatric (spina bifida) clinic
Adult clinic

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* 7. Health care transition tracking and monitoring: Does the pediatric (spina bifida) clinic track and monitor youth with spina bifida as they go through the transition process?

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* 8. Healthcare transition readiness: Does the pediatric (spina bifida) clinic use a standardized transition readiness assessment tool?

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* 9. I understand that the American Academy of Pediatrics has obtained Institutional Review Board (IRB) approval for this project and that there is no Protected Health Information (PHI) that will be obtained in any of the data collection tools. Please indicate if you have inquired as to your need for local IRB approval at your institution.

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* 10. I understand that I am responsible for meeting all of the following completion requirements in order to be eligible for MOC Part 4 credit if the project receives MOC approval (please read each requirement below and check off whether you do understand or do not understand the requirement):

  I understand I do not understand
a. Participate in the project over a 11-month period (August 2019 – July 2020)
b. Complete one interview at the beginning of the project (approximately 60 minutes)
c. Participate in a 60-minute orientation webinar
d. Participate in a 60-minute project kick-off webinar
e. Identify strategies for pulling eligible patient charts from the previous 12-month period (July, 2018 – July 2019). Record the summary data into an online survey (SurveyMonkey) 
f. In addition to the initial baseline data, submit summary data about the patients age 16-22 who are transitioning between the pediatric (spina bifida) clinic and adult provider. De-identified data will be collected via online survey quarterly (Microsoft Form)
g. Submit up to 5 online progress report surveys (Microsoft Form) over the course of the entire project period (will be approximately 10 questions each)
h. Engage in 1 virtual learning collaborative (webinar/videoconference) in early October 2019. This session will last approximately 5 hours
i. Engage in 3 60-minute action period sessions (webinars/videoconferences) following a series of Plan-Do-Study-Act (PDSA) periods – or “action” periods

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* 11. Pediatric (spina bifida) clinic and adult provider practice team members. Please include name and email address for each team member.

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* 12. If selected, at least one member of the project team will be available to participate in the project orientation Webinar scheduled for mid-August 2019. This Webinar will orient you to the data collection components of the project and is required for project participation.

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