Clinical Care Meeting

Clinical Care Meeting Agenda

Friday, June 28, 2019

6:00 – 8:00pm    Opening Reception

Saturday, June 29, 2019

7:00 – 8:00 am Breakfast

8:00 – 8:10 am Welcome

Timothy Brei, MD, SBA Medical Director

8:10 – 8:30 am SBA Plans to Improve Care and Outcomes

Sara Struwe, MPA, SBA President and CEO

8:30 – 9:00 am The Spina Bifida Collaborative Care Network & SBA Care Partners

Judy Thibadeau, RN, MN, SBA Director of Research & Services

9:00 – 9:30 am Presentations

Nicole Gower, Chair of the SBA Board of Directors

9:30 – 9:45 am  Break

9:45 – 10:15 am Guidelines for the Care of People with Spina Bifida Research Priorities

Brad Dicianno, MD, SBA Associate Medical Director

10:15 – 10:45 am Lifespan Model of Care

Betsy Hopson, MSHA, Spina Bifida Program Coordinator

Children’s of Alabama

10:45 am-Noon  National Spina Bifida Program Background & Emerging Research

Kimberly Newsome, MPH, BSN, Health Scientist, Spina Bifida Program Lead

Division on Human Development and Disability, CDC

Noon – 1:00 pm  Lunch

1:00 – 2:30 pm Breakout Sessions

Enhancing/ Improving / Supporting Care Coordination in Spina Bifida

Transition Practices/Programs

How to Get What You Need to Become an SBA Clinic Care Partner

Sexual Function, Relationships, Resources, & Education

2:30 – 3:00 pm   Break

3:00 – 4:30 pm Breakout Sessions

Enhancing/ Improving / Supporting Care Coordination in Spina Bifida

Transition Practices/Programs

How to Get What You Need to Become an SBA Clinic Care Partner

Sexual Function, Relationships, Resources and Education

4:30 pm Adjourn

Sunday, June 30, 2019

7:30 – 8:30 am  Breakfast

8:30 – 9:00 am  Spina Bifida Care at Lurie: Triumphs & Challenges

Robin Bowman, MD, Lurie Children’s Hospital

9:00 – 10:00 am  Highlights from Breakout Sessions

Brad Dicianno, MD

Sara Struwe, MPA, SBA President and CEO

Alex Van Speybroeck, MD

John Wiener, MD

10:00 – 10:15 am  Break

10:15 – 10:45 am  Transition: CDC Activities & the AAP Learning Collaborative

Kimberly Newsome, MPH, BSN, Health Scientist

Spina Bifida Program Lead

Division on Human Development and   Disability, CDC

10:45 – 11:45 am   Adult Panel: Preparing for Transition & Care Coordination

Julie Yindra, Facilitator

Whitney Branham

Chase Phillips

Robert Owens

11:45 am-Noon  Closing Remarks

Sara Struwe, MPA, SBA President and CEO

SATURDAY BREAKOUT SESSIONS

Enhancing/ Improving / Supporting Care Coordination in Spina Bifida

Session Facilitator, Alex Van Speybroeck

The Spina Bifida Care Coordination Guideline will be presented and will include samples of Care Coordination processes and tools used by some SB Clinics that may be adapted for use by others. Additionally, clinics that have participated in a QI Learning Collaborative led by Boston Children’s Hospital will present their experiences relative to use of a Care Coordination Practices Quantification Tool and a Patient Integrative Care Satisfaction Survey.  Finally, there will be a brief discussion to identify how the Spina Bifida Association can support participation in a learning collaborative to enhance care coordination and integration across the lifespan.

Transition Practices/Programs

Session Facilitator, Brad Dicianno

Successful transition to adult care in Spina Bifida is a key process to improving care across the lifespan. What it takes to develop a transition program, how to keep the program going, how to measure success, and barriers encountered will be discussed.  Panelists will present different models of transition programs/care. Discussion will also occur to identify what SBA might do to support you at your institution to organize the thoughtful transition of your patients from the pediatric to the adult world. This facilitated session will include information from another agency that has developed a Transition Tool Kit that could be modified for use by SBA clinics.

How to get what you need to become an SBA Clinic Care Partner

Session Facilitators, Sara Struwe, Judy Thibadeau

SBA will share at this Clinical Care Meeting, criteria for a designated clinic care partnership, which include processes and practices of importance to the care of people with SB and to those who care for them. This discussion session will be led by SBA and will provide an opportunity for participants to share ideas for inclusion of these practices and processes into their clinics.

Sexual Function, Relationships, Resources and Education

Session Facilitator, John Wiener

Issues of sexual knowledge, sexual health, reproduction, and relationships are important to people with Spina Bifida. Yet both families and providers often feel uncomfortable with a discussion around these topics. This session will review the Guidelines for the Care of People with Spina Bifida related to sexual education, women’s and men’s health, and will include information about developing healthy relationships and useful resources related to sexuality for use by clinicians.