TY - JOUR
T1 - Cohort profile of the international spinal cord injury community survey implemented in 22 countries
AU - InSCI
AU - Fekete, Christine
AU - Brach, Mirjam
AU - Ehrmann, Cristina
AU - Post, Marcel W.M.
AU - Stucki, Gerold
AU - Middleton, James
AU - Battistella, Linamara
AU - Li, Jianan
AU - Gutenbrunner, Christoph
AU - Rapidi, Christina Anastasia
AU - Wahyuni, Luh Karunia
AU - Saitoh, Eiichi
AU - Lee, Bum Suk
AU - Juocevicius, Alvydas
AU - Hajjioui, Abderrazak
AU - Stanghelle, Johan K.
AU - Popa, Daiana
AU - Avellanet, Mercè
AU - Baumberger, Michael
AU - Kovindha, Apichana
AU - Escorpizo, Reuben
AU - Engkasan, Julia Patrick
AU - Bickenbach, Jerome
AU - Thyrian, Christine
AU - Perrouin-Verbe, Brigitte
AU - Zampolini, Mauro
AU - Hasnan, Nazirah
AU - Tederko, Piotr
AU - Joseph, Conran
N1 - Funding Information:
This study is based on data from the International Spinal Cord Injury (InSCI) Community Survey, providing the evidence for the Learning Health System for Spinal Cord Injury (LHS-SCI; see Am J Phys Med Rehabil 2017;96(Suppl):S23-34). The LHS-SCI is an effort to implement the recommendations described in the WHO report “International Perspectives on Spinal Cord Injury” (Bickenbach et al. Geneva: WHO Press; 2013). The members of the InSCI Steering Committee are: Julia Patrick Engkasan (International Society of Physical Rehabilitation and Medicine representative, Malaysia), James Middleton (ISCoS representative, Member Scientific Committee, Australia), Gerold Stucki (Chair Scientific Committee, Switzerland), Mirjam Brach (Representative Coordinating Institute, Switzerland), Jerome Bickenbach (Member Scientific Committee, Switzerland), Christine Fekete (Member Scientific Committee, Switzerland), Christine Thyrian (Representative Study Center, Switzerland), Linamara Battistella (Brazil), Jianan Li (China), Brigitte Perrouin-Verbe (France), Christoph Gutenbrunner (Member Scientific Committee, Germany), Christina-Anastasia Rapidi (Greece), Luh Karunia Wahyuni (Indonesia), Mauro Zampolini (Italy), Eiichi Saitoh (Japan), Bum Suk Lee (Korea), Alvydas Juocevicius (Lithuania), Nazirah Hasnan (Malaysia), Abderrazak Hajjioui (Morocco), Marcel W.M. Post (Member Scientific Committee, the Netherlands), Johan K. Stanghelle (Norway), Piotr Tederko (Poland), Daiana Popa (Romania), Conran Joseph (South Africa), Mercè Avellanet (Spain), Michael Baumberger (Switzerland), Apichana Kovindha (Thailand), and Reuben Escorpizo (Member Scientific Committee, United States). The use of InSCI survey data is currently restricted to participating countries. For further information or any request on future collaboration, please contact the InSCI study center at [email protected].
Publisher Copyright:
© 2020 American Congress of Rehabilitation Medicine
PY - 2020/12
Y1 - 2020/12
N2 - Objectives: To detail the methodological features of the first International Spinal Cord Injury (InSCI) Community Survey by describing recruitment and data collection procedures, and to report on the recruitment results and basic characteristics of participants by country and income setting. Design: Cross-sectional survey. Setting: Community setting in 22 countries representing all 6 World Health Organization regions. Participants: Individuals (N=12,591) with traumatic or non-traumatic spinal cord injury (SCI) aged over 18 years. Interventions: Not applicable. Main Outcome Measures: Recruitment and data collection procedures, recruitment results, and basic sociodemographic and lesion characteristics of participants. Results: Eight countries used predefined sampling frames and 14 countries applied convenience sampling for recruitment. Most countries recruited participants through specialized rehabilitation facilities, patient organizations, or acute and general hospitals. Modes of approaching potential participants depended on the sampling strategy and multiple response modes were offered to maximize participation. Contact rates ranged from 33% to 98%, cooperation rates ranged from 29% to 90%, and response rates ranged from 23% to 54%. The majority of participants were men (73%), the median age was 52 years (interquartile range, 40-63y), 60% had a partner, 8% reported that they were born in another country than where they were currently residing, and the median length of education was 12 years (interquartile range, 9-15y). Paraplegia was the main diagnosis (63%), traumatic etiologies were the major cause of injury (81%), and the median time since injury (TSI) was 9 years (interquartile range, 4-19y). Compared with participants from lower income settings, participants from higher income settings were over-represented and, in general, were older, more often diagnosed with tetraplegia, had a longer TSI, higher education, and were more often born in a country different than their current residence country. Conclusions: The successful implementation of the InSCI survey enables the comparison of the situation of individuals with SCI around the world and constitutes a crucial starting point for an international learning experience.
AB - Objectives: To detail the methodological features of the first International Spinal Cord Injury (InSCI) Community Survey by describing recruitment and data collection procedures, and to report on the recruitment results and basic characteristics of participants by country and income setting. Design: Cross-sectional survey. Setting: Community setting in 22 countries representing all 6 World Health Organization regions. Participants: Individuals (N=12,591) with traumatic or non-traumatic spinal cord injury (SCI) aged over 18 years. Interventions: Not applicable. Main Outcome Measures: Recruitment and data collection procedures, recruitment results, and basic sociodemographic and lesion characteristics of participants. Results: Eight countries used predefined sampling frames and 14 countries applied convenience sampling for recruitment. Most countries recruited participants through specialized rehabilitation facilities, patient organizations, or acute and general hospitals. Modes of approaching potential participants depended on the sampling strategy and multiple response modes were offered to maximize participation. Contact rates ranged from 33% to 98%, cooperation rates ranged from 29% to 90%, and response rates ranged from 23% to 54%. The majority of participants were men (73%), the median age was 52 years (interquartile range, 40-63y), 60% had a partner, 8% reported that they were born in another country than where they were currently residing, and the median length of education was 12 years (interquartile range, 9-15y). Paraplegia was the main diagnosis (63%), traumatic etiologies were the major cause of injury (81%), and the median time since injury (TSI) was 9 years (interquartile range, 4-19y). Compared with participants from lower income settings, participants from higher income settings were over-represented and, in general, were older, more often diagnosed with tetraplegia, had a longer TSI, higher education, and were more often born in a country different than their current residence country. Conclusions: The successful implementation of the InSCI survey enables the comparison of the situation of individuals with SCI around the world and constitutes a crucial starting point for an international learning experience.
KW - Rehabilitation
KW - Spinal cord injuries
KW - Surveys and questionnaires
UR - http://www.scopus.com/inward/record.url?scp=85089461153&partnerID=8YFLogxK
U2 - 10.1016/j.apmr.2020.01.022
DO - 10.1016/j.apmr.2020.01.022
M3 - Article
C2 - 32533933
AN - SCOPUS:85089461153
SN - 0003-9993
VL - 101
SP - 2103
EP - 2111
JO - Archives of Physical Medicine and Rehabilitation
JF - Archives of Physical Medicine and Rehabilitation
IS - 12
ER -