ProgrAm - American Academy for Cerebral Palsy and ...

Friday, October 18, 20134:00 pm – 6:00 pm Instructional Courses 14-25IC 22 - FETAL ALCOHOL SYNDROMELocation: 201 C&DAuthors: Peter A. Blasco, MD; Melissa Svoboda, MDLevel: IntermediatePurpose: To present the evolution of the recognition of the Fetal Alcohol Syndrome as an entity and to delineate the clinical diagnosticfeatures of FAS.Target Audience: All clinicians involved in the evaluation and/or care of children with neurodevelopmental disabilities.Course Summary: Alcohol is ubiquitous, and 15% of women of child-bearing age consume alcohol regularly to a moderate or heavydegree. In child development clinics the presumed diagnosis of or question of FAS frequently comes up. Less than half of the referredchildren will actually have FAS. The diagnostic criteria that have evolved for FAS will be discussed, and FAS epidemiology will be reviewed.The pathology and physiology of alcohol as a teratogen will be described. Long-term neurodevelopmental problems and functionaloutcomes will be reviewed. Recommendations for alcohol intake during pregnancy, and resources available for children, families, andpregnant women will be covered.Learning Objectives:1) To describe the precise criteria for making the diagnosis of fetal alcohol syndrome.2) To provide the tools for objectively identifying the physical features of FAS.3) To understand the pathophysiologic mechanisms by which alcohol acts as a teratogen.4) To understand the long-term neurodevelopmental problems that children with FAS encounter.IC 23 - WHOSE LIFE IS IT ANYWAY? MEASURING MEANINGFUL OUTCOMES FOR CHILDREN WITH SEVERE DISABILITIESLocation: 101 B-DAuthors: Unni G. Narayanan, MBBS MSc FRCSC; Shannon Weir, BSc MScLevel: IntermediatePurpose: Explore the concepts of QOL/HRQL in children with severe chronic disabilities, using the Caregiver Priorities and Child HealthIndex of Life with Disabilities (CPCHILD©) Questionnaire as a working example.Target Audience: Health care professionals involved in the care of, or clinical research with, children with chronic disabilities.Course Summary: The impact of health care interventions is more meaningfully assessed using patient based outcome measures such asquality of life. This course will explore the concepts of patient priorities, quality of life (QOL) and health related quality of life (HRQL), and theimperative for, and the challenges involved in, conceptualizing these constructs for children with severe disabilities, using the example of theCPCHILD Questionnaire. The development of the CPCHILD will be used as an example to illustrate the science behind the measurement ofoutcomes. Participants will become familiar with the conceptual underpinnings and the validation of this instrument as well as the potentialapplications of the questionnaire in the evaluation of the effectiveness of the different interventions used to treat children with severedisabilities.Learning Objectives:1) Define the concepts of quality of life (QOL) and health related quality of life (HRQL).2) Discuss the challenges inherent to the measurement of children’s QOL/HRQL and the major domains to select and evaluate QOLinstruments for children. Introduce the framework of patient priorities.3) Demonstrate how QOL/HRQL instruments are constructed, using the development of the CPCHILD and other examples to understandthe properties of reliability, validity and responsiveness.4) Discuss the application, scoring and interpretation of the CPCHILD Questionnaire.FRIday, October 18AACPDM 67 th Annual Meeting • Research & Practice 47