Amy Houtrow, MD, PhD, MPH No relevant disclosures

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Presentation transcript:

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

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

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

Review Articles

Knowledge Now Mary McMahon, MD 11/11, modified 5/13 http://me.aapmr.org/kn/article.html?id=227

Clinical Practice Guideline

From the American Academy of Pediatrics Clinical practice guideline Clinical report

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

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

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

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

Patient and Family Education

Spina Bifida Association http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8029565/k.90A7/SB_University.htm