1. Amy Houtrow, MD, PhD, MPH No relevant disclosures
Funded by NICHD and CDC for Spina Bifida Research

2. Peds/DD Council Special Thanks to: Maura McManus Pam Wilson Mike Green
Sally Evans
Elaine Pico

3. The Toolbox for Spina Bifida
Review Articles
KnowledgeNow
Clinical Practice Guidelines
Core Constructs
Assessment Instruments
Quality Metrics
Patient Education Materials

4. Review Articles

5. Knowledge Now Mary McMahon, MD 11/11, modified 5/13

6. Clinical Practice Guideline

7. From the American Academy of Pediatrics
Clinical practice guideline
Clinical report

8. Core Constructs Body systems –impairments
Activity limitations and participation restrictions
Self care, mobility, social cognition
Quality of Life
Family centered care
Multidisciplinary management
Developing functional independence

9. Assessment Instruments
Pediatric Evaluation of Disability Inventory (PEDI) –was developed to evaluate functional skills and abilities. Has 3 subsets related to self care, mobility and social function. Age range is 6 months to 7.5 years. There is a computerized version available (CAT). Not free
Functional Independence Measure for Children (WeeFIM) – global assessment of disability and amount of care giver assistance required for functional tasks. Age range …..The domains included are self care, mobility and cognition. In relations to spina bifida the self care and mobility domains are the most useful. Not free Uniform Data System

10. Assessment Instruments
Pediatric Outcomes Data Collection Instruments (PODCI) – tool is used to assess overall health, pain and the ability to participated in different levels of activity. Eight scales include: upper extremity and physical function, mobility and transfers, sports physical functioning, pain and comfort, treatment expectations, happiness, satisfaction and global functioning scale. Age range is under 19 years. Not free
Pediatric Quality of Life Inventory (PEDS QL) –measures health related quality of life items related to physical, emotional, social and school functioning. There are 23 items and the age range is 2-18 years. Not free

11. Quality Metrics National Quality Measures Clearinghouse
Pressure Ulcer: rate per 1,000 discharges
Developmental Screening in the first 3 years of life
Have to use general measures as no specific ones have been vetted

12. Patient and Family Education

13. Spina Bifida Association