M W Post1,2, S Charlifue3, F Biering-Sørensen4, A Catz5, M P Dijkers6, J Horsewell7, V K Noonan8, L Noreau9, D G Tate10, K A Sinnott11. 1. Brain Center Rudolf Magnus and Center of Excellence in Rehabilitation Medicine, University Medical Center Utrecht and De Hoogstraat Rehabilitation Centre, Utrecht, The Netherlands. 2. Department of Rehabilitation Medicine, Center for Rehabilitation, University of Groningen, University Medical Center Groningen, Groningen, The Netherlands. 3. Craig Hospital, Englewood, CO, USA. 4. Department for Spinal Cord Injuries, Rigshospitalet and Glostrup Hospital, University of Copenhagen, Copenhagen, Denmark. 5. Loewenstein Rehabilitation Hospital, Raanana, and Tel-Aviv University, Tel-Aviv, Israel. 6. Icahn School of Medicine at Mount Sinai, New York, NY, USA. 7. The European Spinal Cord Injury Federation, Copenhagen, Denmark. 8. The Rick Hansen Institute, Vancouver, BC, Canada. 9. Université Laval and Center for Interdisciplinary Research in Rehabilitation and Social Integration (CIRRIS), Quebec City, QC, Canada. 10. University of Michigan, Department of Physical Medicine and Rehabilitation, Ann Arbor, MI, USA. 11. Burwood Academy of Independent Living, Christchurch, New Zealand.
Abstract
STUDY DESIGN: Consensus decision-making process. OBJECTIVES: The objective of this study was to develop an International Spinal Cord Injury (SCI) Activities and Participation (A&P) Basic Data Set. SETTING: International working group. METHODS: A committee of experts was established to select and define A&P data elements to be included in this data set. A draft data set was developed and posted on the International Spinal Cord Society (ISCoS) and American Spinal Injury Association websites and was also disseminated among appropriate organizations for review. Suggested revisions were considered, and a final version of the A&P Data Set was completed. RESULTS: Consensus was reached to define A&P and to incorporate both performance and satisfaction ratings. Items that were considered core to each A&P domain were selected from two existing questionnaires. Four items measuring activities were selected from the Spinal Cord Independence Measure III to provide basic data on task execution in activities of daily living. Eight items were selected from the Craig Handicap Assessment and Reporting Technique to provide basic data on the frequency of participation. An additional rating of satisfaction on a three-point scale for each item completes the total of 24 A&P variables. CONCLUSION: Collection of the International SCI A&P Basic Data Set variables in all future research on SCI outcomes is advised to facilitate comparison of results across published studies from around the world. Additional standardised instruments to assess activities of daily living or participation can be administered, depending on the purpose of a particular study.
STUDY DESIGN: Consensus decision-making process. OBJECTIVES: The objective of this study was to develop an International Spinal Cord Injury (SCI) Activities and Participation (A&P) Basic Data Set. SETTING: International working group. METHODS: A committee of experts was established to select and define A&P data elements to be included in this data set. A draft data set was developed and posted on the International Spinal Cord Society (ISCoS) and American Spinal Injury Association websites and was also disseminated among appropriate organizations for review. Suggested revisions were considered, and a final version of the A&P Data Set was completed. RESULTS: Consensus was reached to define A&P and to incorporate both performance and satisfaction ratings. Items that were considered core to each A&P domain were selected from two existing questionnaires. Four items measuring activities were selected from the Spinal Cord Independence Measure III to provide basic data on task execution in activities of daily living. Eight items were selected from the Craig Handicap Assessment and Reporting Technique to provide basic data on the frequency of participation. An additional rating of satisfaction on a three-point scale for each item completes the total of 24 A&P variables. CONCLUSION: Collection of the International SCI A&P Basic Data Set variables in all future research on SCI outcomes is advised to facilitate comparison of results across published studies from around the world. Additional standardised instruments to assess activities of daily living or participation can be administered, depending on the purpose of a particular study.
Authors: F Biering-Sørensen; M S Alexander; S Burns; S Charlifue; M DeVivo; V Dietz; A Krassioukov; R Marino; V Noonan; M W M Post; T Stripling; L Vogel; P Wing Journal: Spinal Cord Date: 2010-11-09 Impact factor: 2.772
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Authors: Marcel W M Post; Carlijn H van der Zee; Jolanda Hennink; Caroline G Schafrat; Johanna M A Visser-Meily; Steven Berdenis van Berlekom Journal: Disabil Rehabil Date: 2011-10-06 Impact factor: 3.033
Authors: Kim Anderson; Sergio Aito; Michal Atkins; Fin Biering-Sørensen; Susan Charlifue; Armin Curt; John Ditunno; Clive Glass; Ralph Marino; Ruth Marshall; Mary Jane Mulcahey; Marcel Post; Gordana Savic; Giorgio Scivoletto; Amiram Catz Journal: J Spinal Cord Med Date: 2008 Impact factor: 1.985
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Authors: Vanessa K Noonan; Elaine Chan; Kent Bassett-Spiers; David J Berlowitz; Fin Biering-Sørensen; Susan Charlifue; Marnie Graco; Keith C Hayes; Jane Horsewell; Phalgun Joshi; Debora Markelis; Verna Smith; Zeina Waheed; Douglas J Brown Journal: J Neurotrauma Date: 2017-10-27 Impact factor: 5.269