Nathalie L Maitre1,2, Vera J Burton3,4, Andrea F Duncan5, Sai Iyer6, Betsy Ostrander7, Sarah Winter7, Lauren Ayala7, Stephanie Burkhardt8, Gwendolyn Gerner3,4, Ruth Getachew3, Kelsey Jiang6, Laurie Lesher7, Carrie M Perez5, Melissa Moore-Clingenpeel9, Rebecca Lam10, Dennis J Lewandowski8, Rachel Byrne10. 1. Center for Perinatal Research and nathalie.maitre@nationwidechildrens.org. 2. Department of Pediatrics, Nationwide Children's Hospital, Columbus, Ohio. 3. Division of Neurology and Developmental Medicine, Kennedy Krieger Institute, Baltimore, Maryland. 4. Department of Pediatrics and Neurosciences Intensive Care Nursery, School of Medicine, Johns Hopkins University, Baltimore, Maryland. 5. Department of Pediatrics, The University of Texas Health Science Center at Houston, Houston, Texas. 6. Program of Developmental Behavioral Pediatrics, Department of Pediatrics, Mattel Children's Hospital, and University of California, Los Angeles, Los Angeles, California. 7. Department of Pediatrics, School of Medicine, University of Utah, Salt Lake City, Utah; and. 8. Center for Perinatal Research and. 9. Biostatistics Core, The Abigail Wexner Research Institute, and. 10. Cerebral Palsy Foundation, New York, New York.
Abstract
BACKGROUND AND OBJECTIVES: Early diagnosis of cerebral palsy (CP) is critical in obtaining evidence-based interventions when plasticity is greatest. In 2017, international guidelines for early detection of CP were published on the basis of a systematic review of evidence. Our study aim was to reduce the age at CP diagnosis throughout a network of 5 diverse US high-risk infant follow-up programs through consistent implementation of these guidelines. METHODS: The study leveraged plan-do-study-act and Lean methodologies. The primary outcome was age at CP diagnosis. Data were acquired during the corresponding 9-month baseline and quarterly throughout study. Balancing measures were clinic no-show rates and parent perception of the diagnosis visit. Clinic teams conducted strengths, weaknesses, opportunities, and threats analyses, process flow evaluations, standardized assessments training, and parent questionnaires. Performance of a 3- to 4-month clinic visit was a critical process step because it included a Hammersmith Infant Neurologic Examination, a General Movements Assessment, and standardized assessments of motor function. RESULTS: The age at CP diagnosis decreased from a weighted average of 19.5 (95% confidence interval 16.2 to 22.8) to 9.5 months (95% confidence interval 4.5 to 14.6), with P = .008; 3- to 4-month visits per site increased from the median (interquartile range) 14 (5.2-73.7) to 54 (34.5-152.0), with P < .001; and no-show rates were not different. Parent questionnaires revealed positive provider perception with improvement opportunities for information content and understandability. CONCLUSIONS: Large-scale implementation of international guidelines for early detection of CP is feasible in diverse high-risk infant follow-up clinics. The initiative was received positively by families and without adversely affecting clinic operational flow. Additional parent support and education are necessary.
BACKGROUND AND OBJECTIVES: Early diagnosis of cerebral palsy (CP) is critical in obtaining evidence-based interventions when plasticity is greatest. In 2017, international guidelines for early detection of CP were published on the basis of a systematic review of evidence. Our study aim was to reduce the age at CP diagnosis throughout a network of 5 diverse US high-risk infant follow-up programs through consistent implementation of these guidelines. METHODS: The study leveraged plan-do-study-act and Lean methodologies. The primary outcome was age at CP diagnosis. Data were acquired during the corresponding 9-month baseline and quarterly throughout study. Balancing measures were clinic no-show rates and parent perception of the diagnosis visit. Clinic teams conducted strengths, weaknesses, opportunities, and threats analyses, process flow evaluations, standardized assessments training, and parent questionnaires. Performance of a 3- to 4-month clinic visit was a critical process step because it included a Hammersmith Infant Neurologic Examination, a General Movements Assessment, and standardized assessments of motor function. RESULTS: The age at CP diagnosis decreased from a weighted average of 19.5 (95% confidence interval 16.2 to 22.8) to 9.5 months (95% confidence interval 4.5 to 14.6), with P = .008; 3- to 4-month visits per site increased from the median (interquartile range) 14 (5.2-73.7) to 54 (34.5-152.0), with P < .001; and no-show rates were not different. Parent questionnaires revealed positive provider perception with improvement opportunities for information content and understandability. CONCLUSIONS: Large-scale implementation of international guidelines for early detection of CP is feasible in diverse high-risk infant follow-up clinics. The initiative was received positively by families and without adversely affecting clinic operational flow. Additional parent support and education are necessary.
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