Development of the International Spinal Cord Injury Activities and Participation Basic Data Set.
METHODS
Consensus decision-making process.


OBJECTIVE
The objective of this study was to develop an International Spinal Cord Injury (SCI) Activities and Participation (A&P) Basic Data Set.


METHODS
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.


CONCLUSIONS
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.
Brain Center Rudolf Magnus and Center of Excellence in Rehabilitation Medicine, University Medical Center Utrecht and De Hoogstraat Rehabilitation Centre, Utrecht, The Netherlands.|Department of Rehabilitation Medicine, Center for Rehabilitation, University of Groningen, University Medical Center Groningen, Groningen, The Netherlands.
M W
MW
Post
Craig Hospital, Englewood, CO, USA.
S
S
Charlifue
Department for Spinal Cord Injuries, Rigshospitalet and Glostrup Hospital, University of Copenhagen, Copenhagen, Denmark.
F
F
Biering-Sørensen
Loewenstein Rehabilitation Hospital, Raanana, and Tel-Aviv University, Tel-Aviv, Israel.
A
A
Catz
Icahn School of Medicine at Mount Sinai, New York, NY, USA.
M P
MP
Dijkers
The European Spinal Cord Injury Federation, Copenhagen, Denmark.
J
J
Horsewell
The Rick Hansen Institute, Vancouver, BC, Canada.
V K
VK
Noonan
Université Laval and Center for Interdisciplinary Research in Rehabilitation and Social Integration (CIRRIS), Quebec City, QC, Canada.
L
L
Noreau
University of Michigan, Department of Physical Medicine and Rehabilitation, Ann Arbor, MI, USA.
D G
DG
Tate
Burwood Academy of Independent Living, Christchurch, New Zealand.
K A
KA
Sinnott
D016208:Databases, Factual; D005260:Female; D006801:Humans; D007391:International Cooperation; D008297:Male; D012720:Severity of Illness Index; D013119:Spinal Cord Injuries / Q000453:epidemiology* / Q000503:physiopathology / Q000523:psychology*; D013997:Time Factors