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Rehabilitation Institute
Amy Houtrow, MD, PhD, MPH
No relevant disclosures
Funded by NICHD and CDC for Spina Bifida Research
Rehabilitation Institute
Special Thanks to:
Peds/DD Council Maura McManus Pam Wilson Mike Green Sally Evans Elaine Pico
Rehabilitation Institute
The Toolbox for Spina Bifida
Review Articles KnowledgeNow Clinical Practice Guidelines Core Constructs Assessment Instruments Quality Metrics Patient Education Materials
Rehabilitation Institute
Review Articles
Rehabilitation Institute
Knowledge Now
Mary McMahon, MD 11/11, modified 5/13 http://me.aapmr.org/kn/article.html?id=227
Rehabilitation Institute
Clinical Practice Guideline
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From the American Academy of Pediatrics
Clinical practice guideline
Clinical report
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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
Rehabilitation Institute
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 www.pedicat.com
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 www.udsmr.org
Rehabilitation Institute
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 www.aaos.org/research/outcomes/outcomes_list.asp
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 www.pql.org
Rehabilitation Institute
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
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Patient and Family Education
Rehabilitation Institute
Spina Bifida Association
http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8029565/k.90A7/SB_University.htm