Clinical Care Meeting

Clinical Care Meeting Agenda*

Thursday, June 4, 2020

6:00 – 7:30 pm     Opening Reception, Loews Hotel Philadelphia

Friday, June 5, 2020

7:00 – 8:00 am
Breakfast, Stokes Rotunda, Children’s Hospital of Pennsylvania

8:00 – 8:15 am
Welcome
Sara Struwe, Spina Bifida Association, President and CEO
Timothy Brei, MD, Medical Director, Spina Bifida Association

8:15 – 8:30 am
Introduction to the Spina Bifida Clinical Care Meeting

8:30 – 9:00 am
Announcement of SBA Clinical Care Partners

9:00 – 9:45 am
Improving How We Care – The Family Experience

9:45 – 10:00 am
Break

10:00 – 10:45 am
Achieving Desired Outcomes using a Group Visit Approach

10:45 – Noon
The Neurocognitive Profile in Spina Bifida & Implications on Care

Noon – 1:00 pm
Lunch

1:00 – 2:30 pm
Breakout Sessions **

  1. Clinic Practices to Promote Decision Making, Transition Preparation, and Ways to Address Challenges to Developing Self-Advocacy
  2. Spina Bifida Clinics: A Philosophy of Care–Creative Ways to Deliver Guideline Implementation
  3. Legal Issues of “Adulting” Related to Medical Care

2:30 – 3:00 pm
Break

3:00 – 4:30 pm
Breakout Sessions repeated**

  1. Clinic Practices to Promote Decision Making, Transition Preparation, and Ways to Address Challenges to Developing Self-Advocacy
  2. Spina Bifida Clinics: A Philosophy of Care–Creative Ways to Deliver Guideline Implementation
  3. Legal Issues of “Adulting” Related to Medical Care

4:30 pm
Adjourn

Saturday, June 6, 2020

7:30 – 8:30 am
Breakfast, Stokes Rotunda, Children’s Hospital of Philadelphia

8:30 – 9:30 am
Spina Bifida Care–Children’s Hospital of Philadelphia: Successes and Challenges

9:00 – 9:30 am
The Management of Myelomeningocele Study (MOMS) Update

9:30 – 9:45
Break

9:45 – 11:15 am
Breakout Sessions repeated**

  1. Clinic Practices to Promote Decision Making, Transition Preparation, and Ways to Address Challenges to Developing Self-Advocacy
  2. Spina Bifida Clinics: A Philosophy of Care–Creative Ways to Deliver Guideline Implementation
  3. Legal Issues of “Adulting” Related to Medical Care

11:15 am – 11:45 am
Patient-Centered Care, Patient Engagement

11:45 am-Noon
Closing Remarks

BREAKOUT SESSION DESCRIPTIONS:
1. Clinic Practices to Promote Decision Making, Transition Preparation, and Ways to Address Challenges to Developing Self-Advocacy

DescriptionJoin this session for an opportunity to discuss tools and tips to facilitate the development of decision making in people with Spina Bifida beginning at a young age; how to address the challenges to develop self-sufficiency; and examples of the use of transition readiness data to support the transition preparation effort.

2. Spina Bifida Clinics: A Philosophy of Care–Creative Ways to Deliver Guideline Implementation

Description: Join this session for a discussion of the different ways Spina Bifida care can be delivered, including financial considerations, and challenges to implementing the Guidelines for the Care of People with Spina Bifida with examples of approaches that have proven successful.

3. Legal Issues of “Adulting” Related to Medical Care

Description: Join us for an information and education workshop for health care professionals. The topics covered in this workshop include guardianship, powers of attorney, microboards, wills, family trusts, special needs trust, SSI, SSA, Social Security Disability, Medicare/Medicaid, ABLE accounts, budget planning, and transition planning. This workshop will explain the necessity of these disability and special needs planning documents and what health care providers need to know about them.

* Agenda subject to change

CMEs and CEUs will be provided.

Saturday Afternoon Workshops

We are offering the following optional workshops for a $50.00 fee. Box lunches are included.

Introduction to the Spina Bifida Association’s Bowel Management Protocol

12:30 – 3:30 pm

Description: Less than 50 percent of people with Spina Bifida live with bowel continence.  Bowel incontinence is one of the most impactful issues people with Spina Bifida experience.  Parents and adults with Spina Bifida, clinical leaders in the field of bowel management, and the SBA have developed the Bowel Management Protocol that addresses this critical issue from birth to adulthood. Participate in this workshop to explore and discuss the importance of bowel management from birth and throughout life and how to address it.

Patient-Centered Research Gaps/Development of Research Questions

12:30 – 3:30 pm

Session Facilitator: Brad E. Dicianno, MD, Guideline Steering Committee Co-Chair; Associate Medical Director and Chair of Spina Bifida Association’s Professional Advisory Council; Associate Professor, Department of Physical Medicine and Rehabilitation, University of Pittsburgh School of Medicine

Description: The development of the Guidelines for the Care of People with Spina Bifida revealed many research gaps that affect care and outcomes of people living with Spina  Bifida. A survey of parents and adults living with Spina Bifida revealed what research topics are important to them. The National Spina Bifida Patient Registry collects large amounts of data on outcomes related to Spina Bifida. Join this session to discuss the intersection of all three and how to leverage researchers, clinicians, patient-reported outcomes, and the Spina Bifida Collaborative Care Network to identify and facilitate research that is important to people with Spina Bifida and their families.  

 Additional CMEs and CEUs will be provided for the workshops.