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Cohort Profile of the International Spinal Cord Injury Community Survey Implemented in 22 Countries

  • Christine Fekete
    Correspondence
    Corresponding author Christine Fekete, PhD, Swiss Paraplegic Research, Guido A. Zäch Institute, Guido A. Zäch Strasse 4, 6207 Nottwil, Switzerland.
    Affiliations
    Swiss Paraplegic Research, Guido A. Zäch Institute, Nottwil, Switzerland

    Department of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland
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  • Mirjam Brach
    Affiliations
    Swiss Paraplegic Research, Guido A. Zäch Institute, Nottwil, Switzerland

    Department of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland
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  • Cristina Ehrmann
    Affiliations
    Swiss Paraplegic Research, Guido A. Zäch Institute, Nottwil, Switzerland

    Department of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland
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  • Marcel W.M. Post
    Affiliations
    Swiss Paraplegic Research, Guido A. Zäch Institute, Nottwil, Switzerland

    University of Groningen, University Medical Center Groningen, Department of Rehabilitation Medicine, Center for Rehabilitation, Groningen, the Netherlands

    Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Utrecht, the Netherlands
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  • Author Footnotes
    ∗ The members of the InSCI group are: James Middleton, John Walsh Centre for Rehabilitation Research, Sydney Medical School, Northern Clinical School, The University of Sydney, Sydney, Australia; Linamara Battistella, School of Medicine, University of São Paulo, São Paulo, Brazil; Jianan Li, Department of Rehabilitation Medicine, Nanjing Medical University, Nanjing, China; Brigitte Perrouin-Verbe, University Hospital of Nantes, St Jacques Hospital, Nantes, France; Christoph Gutenbrunner, Department of Rehabilitation Medicine, Hannover Medical School, Hannover, Germany; Christina-Anastasia Rapidi, Department of Physical and Rehabilitation Medicine, General Hospital "G.Gennimatas", Athens, Greece; Luh Karunia Wahyuni, Medicine and Rehabilitation Department Dr. Cipto Mangunkusumo National General Hospital - Faculty of Medicine, Universitas Indonesia, Jakarta, Indonesia; Mauro Zampolini, Department of Rehabilitation, San Giovanni Battista Hospital, Foligno, Perugia, Italy; Eiichi Saitoh, Department of Rehabilitation Medicine I, School of Medicine, Fujita Health University, Toyoake, Japan; Bum Suk Lee, Department of Rehabilitation Medicine, National Rehabilitation Center and Hospital, Seoul, South Korea; Alvydas Juocevicius, Rehabilitation, Physical and Sport Medicine Center Department of Vilnius University Hospital Santariskiu Klinikos, Medical Faculty Vilnius University, Vilnius, Lithuania; Nazirah Hasnan, Department of Rehabilitation Medicine, University of Malaya, Kuala Lumpur, Malaysia; Abderrazak Hajjioui, Department of Rehabilitation Medicine, Clinical Neuroscience Laboratory, Faculty of Medicine, Mohammed Ben Abdallah University, Fez, Morocco; Johan K. Stanghelle, Department of Physical Medicine and Rehabilitation, Faculty of Medicine, University of Oslo, Oslo, Norway; Piotr Tederko, Department of Rehabilitation, First Faculty of Medicine, Medical University of Warsaw, Poland; Daiana Popa, Clinical Rehabilitation Hospital Felix-Spa Bihor County, Oradea, Romania; Conran Joseph, Division of Physiotherapy, Stellenbosch University, Cape Town, South Africa; Mercè Avellanet, Research group in Health Sciences and Health Services, Universitat d’Andorra, Spain; Michael Baumberger, Swiss Paraplegic Center, Nottwil, Switzerland; Apichana Kovindha, Department of Rehabilitation Medicine, Faculty of Medicine, Chiang Mai University, Chiang Mai, Thailand; and Reuben Escorpizo, The University of Vermont, Department of Rehabilitation and Movement Science, Burlington, VT, United States.
    InSCI
    Footnotes
    ∗ The members of the InSCI group are: James Middleton, John Walsh Centre for Rehabilitation Research, Sydney Medical School, Northern Clinical School, The University of Sydney, Sydney, Australia; Linamara Battistella, School of Medicine, University of São Paulo, São Paulo, Brazil; Jianan Li, Department of Rehabilitation Medicine, Nanjing Medical University, Nanjing, China; Brigitte Perrouin-Verbe, University Hospital of Nantes, St Jacques Hospital, Nantes, France; Christoph Gutenbrunner, Department of Rehabilitation Medicine, Hannover Medical School, Hannover, Germany; Christina-Anastasia Rapidi, Department of Physical and Rehabilitation Medicine, General Hospital "G.Gennimatas", Athens, Greece; Luh Karunia Wahyuni, Medicine and Rehabilitation Department Dr. Cipto Mangunkusumo National General Hospital - Faculty of Medicine, Universitas Indonesia, Jakarta, Indonesia; Mauro Zampolini, Department of Rehabilitation, San Giovanni Battista Hospital, Foligno, Perugia, Italy; Eiichi Saitoh, Department of Rehabilitation Medicine I, School of Medicine, Fujita Health University, Toyoake, Japan; Bum Suk Lee, Department of Rehabilitation Medicine, National Rehabilitation Center and Hospital, Seoul, South Korea; Alvydas Juocevicius, Rehabilitation, Physical and Sport Medicine Center Department of Vilnius University Hospital Santariskiu Klinikos, Medical Faculty Vilnius University, Vilnius, Lithuania; Nazirah Hasnan, Department of Rehabilitation Medicine, University of Malaya, Kuala Lumpur, Malaysia; Abderrazak Hajjioui, Department of Rehabilitation Medicine, Clinical Neuroscience Laboratory, Faculty of Medicine, Mohammed Ben Abdallah University, Fez, Morocco; Johan K. Stanghelle, Department of Physical Medicine and Rehabilitation, Faculty of Medicine, University of Oslo, Oslo, Norway; Piotr Tederko, Department of Rehabilitation, First Faculty of Medicine, Medical University of Warsaw, Poland; Daiana Popa, Clinical Rehabilitation Hospital Felix-Spa Bihor County, Oradea, Romania; Conran Joseph, Division of Physiotherapy, Stellenbosch University, Cape Town, South Africa; Mercè Avellanet, Research group in Health Sciences and Health Services, Universitat d’Andorra, Spain; Michael Baumberger, Swiss Paraplegic Center, Nottwil, Switzerland; Apichana Kovindha, Department of Rehabilitation Medicine, Faculty of Medicine, Chiang Mai University, Chiang Mai, Thailand; and Reuben Escorpizo, The University of Vermont, Department of Rehabilitation and Movement Science, Burlington, VT, United States.
    Authors List
  • Gerold Stucki
    Affiliations
    Swiss Paraplegic Research, Guido A. Zäch Institute, Nottwil, Switzerland

    Department of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland

    ICF Research Branch, Swiss Paraplegic Research, Nottwil, Switzerland
    Search for articles by this author
  • Author Footnotes
    ∗ The members of the InSCI group are: James Middleton, John Walsh Centre for Rehabilitation Research, Sydney Medical School, Northern Clinical School, The University of Sydney, Sydney, Australia; Linamara Battistella, School of Medicine, University of São Paulo, São Paulo, Brazil; Jianan Li, Department of Rehabilitation Medicine, Nanjing Medical University, Nanjing, China; Brigitte Perrouin-Verbe, University Hospital of Nantes, St Jacques Hospital, Nantes, France; Christoph Gutenbrunner, Department of Rehabilitation Medicine, Hannover Medical School, Hannover, Germany; Christina-Anastasia Rapidi, Department of Physical and Rehabilitation Medicine, General Hospital "G.Gennimatas", Athens, Greece; Luh Karunia Wahyuni, Medicine and Rehabilitation Department Dr. Cipto Mangunkusumo National General Hospital - Faculty of Medicine, Universitas Indonesia, Jakarta, Indonesia; Mauro Zampolini, Department of Rehabilitation, San Giovanni Battista Hospital, Foligno, Perugia, Italy; Eiichi Saitoh, Department of Rehabilitation Medicine I, School of Medicine, Fujita Health University, Toyoake, Japan; Bum Suk Lee, Department of Rehabilitation Medicine, National Rehabilitation Center and Hospital, Seoul, South Korea; Alvydas Juocevicius, Rehabilitation, Physical and Sport Medicine Center Department of Vilnius University Hospital Santariskiu Klinikos, Medical Faculty Vilnius University, Vilnius, Lithuania; Nazirah Hasnan, Department of Rehabilitation Medicine, University of Malaya, Kuala Lumpur, Malaysia; Abderrazak Hajjioui, Department of Rehabilitation Medicine, Clinical Neuroscience Laboratory, Faculty of Medicine, Mohammed Ben Abdallah University, Fez, Morocco; Johan K. Stanghelle, Department of Physical Medicine and Rehabilitation, Faculty of Medicine, University of Oslo, Oslo, Norway; Piotr Tederko, Department of Rehabilitation, First Faculty of Medicine, Medical University of Warsaw, Poland; Daiana Popa, Clinical Rehabilitation Hospital Felix-Spa Bihor County, Oradea, Romania; Conran Joseph, Division of Physiotherapy, Stellenbosch University, Cape Town, South Africa; Mercè Avellanet, Research group in Health Sciences and Health Services, Universitat d’Andorra, Spain; Michael Baumberger, Swiss Paraplegic Center, Nottwil, Switzerland; Apichana Kovindha, Department of Rehabilitation Medicine, Faculty of Medicine, Chiang Mai University, Chiang Mai, Thailand; and Reuben Escorpizo, The University of Vermont, Department of Rehabilitation and Movement Science, Burlington, VT, United States.

      Abstract

      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.

      Keywords

      List of abbreviations:

      GDP PPP (gross domestic product based on purchasing power parity), ICF (International Classification of Functioning, Disability and Health), InSCI (International Spinal Cord Injury), ISCoS (International Spinal Cord Society), Q (quartile), SCI (spinal cord injury), TSI (time since injury), WHO (World Health Organization)
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