Miriam Hwang1, Marika Augutis2, Cristina Sadowsky3, Wiebke Höfers4, Lawrence C Vogel1, Marcel Post5, Susan Charlifue6, Peter Wayne New7,8,9, Rhona Fisher10, Joan Carney3, Kathryn Dent11, M J Mulcahey11. 1. 1Research Department, Shriners Hospitals for Children, Chicago, IL USA. 2. 2Department of Neurobiology, Core Sciences and Society, Karolinska Institute, Stockholm, Sweden. 3. Rehabilitation Department, Kennedy Krieger Rehabilitation Institute, Baltimore, MD USA. 4. 4Physiotherapy Department, Sunnaas Hospital, Akershus, Norway. 5. 5Center of Excellence for Rehabilitation Medicine, Brain Center Rudolf Magnus, University Utrecht and De Hoogstraat Rehabilitation, Utrecht, Netherlands. 6. 6Research Department, Craig Hospital, Englewood, CO USA. 7. 7Spinal Rehabilitation Service, Caulfield Hospital, Melbourne, VIC Australia. 8. 8Epworth-Monash Rehabilitation Unit, Monash University, Melbourne, VIC Australia. 9. 9Department of Epidemiology and Preventitive Medicine, School of Public Health and Preventiative Medicine, Monash University, Melbourne, VIC Australia. 10. Fisher Association, Baltimore, MD USA. 11. Department of Occupational Therapy, Center for Outcomes and Measurement, Jefferson College of Rehabilitation Sciences, Jefferson (Philadelphia University+Thomas Jefferson University), Philadelphia, PA USA.
Abstract
Study design: International focus groups. Objectives: The objective of this project was to develop the International Spinal Cord Injury (SCI) Pediatric Activity and Participation (A&P) Basic Data Set. Methods: A focus group of experts in pediatric and adult SCI, and contributors of the existing adult International SCI Adult A&P Basic Data Set convened to develop an initial draft of the data set, which was iteratively refined over a 12 month period based on relevant literature and existing outcome measures that evaluate pediatric activity and participation. The draft was reviewed and approved by the larger project working group and then distributed to the International Spinal Cord Society (ISCoS), American Spinal Injury Association (ASIA), and relevant expert groups for review. Feedback received was considered before the final data set was approved. Results: The International SCI Pediatric A&P Basic Data Set is comprised of 13 variables: administration date, mobility, dressing, feeding, toileting, communication, family outings, spending time with friends, being out with friends, participating in team or club activity, paid work, dating, and physical activity. It is intended for children between 6 and 17 years of age, who have been discharged from initial rehabilitation/hospitalization for a minimum of 3 months. Conclusion: The International SCI Pediatric A&P Basic Data Set was developed to standardize the recording of a minimal amount of information about activities and participation in children with SCI. Further work on reliability and cultural validation is needed. Sponsorship: This study was funded by the Rick Hansen Institute, Research Award #G2015-27 (Mulcahey, PI).
Study design: International focus groups. Objectives: The objective of this project was to develop the International Spinal Cord Injury (SCI) Pediatric Activity and Participation (A&P) Basic Data Set. Methods: A focus group of experts in pediatric and adult SCI, and contributors of the existing adult International SCI Adult A&P Basic Data Set convened to develop an initial draft of the data set, which was iteratively refined over a 12 month period based on relevant literature and existing outcome measures that evaluate pediatric activity and participation. The draft was reviewed and approved by the larger project working group and then distributed to the International Spinal Cord Society (ISCoS), American Spinal Injury Association (ASIA), and relevant expert groups for review. Feedback received was considered before the final data set was approved. Results: The International SCI Pediatric A&P Basic Data Set is comprised of 13 variables: administration date, mobility, dressing, feeding, toileting, communication, family outings, spending time with friends, being out with friends, participating in team or club activity, paid work, dating, and physical activity. It is intended for children between 6 and 17 years of age, who have been discharged from initial rehabilitation/hospitalization for a minimum of 3 months. Conclusion: The International SCI Pediatric A&P Basic Data Set was developed to standardize the recording of a minimal amount of information about activities and participation in children with SCI. Further work on reliability and cultural validation is needed. Sponsorship: This study was funded by the Rick Hansen Institute, Research Award #G2015-27 (Mulcahey, PI).
Authors: F Biering-Sørensen; A S Burns; A Curt; L A Harvey; M Jane Mulcahey; P W Nance; A M Sherwood; S A Sisto Journal: Spinal Cord Date: 2012-09-04 Impact factor: 2.772