OBJECTIVE 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 22 countries representing all six WHO regions, community setting. PARTICIPANTS n=12,591 persons with traumatic or non-traumatic SCI aged ≥18 years. INTERVENTIONS NA. MAIN OUTCOMES Recruitment and data collection procedures; recruitment results; basic participants' characteristics. 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, and/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%-98%; cooperation rates from 29%-90%, and response rates from 23%-54%. The majority of participants were males (73%), median age was 52 (IQR 40-63), 60% had a partner, 8% reported that they were born in another country than currently residing, and median education was 12 years (IQR 9-15). Paraplegia was the main diagnosis (63%), traumatic etiologies the major cause of injury (81%), and median time since injury (TSI) was 9 years (IQR 4-19). Participants from higher income quartiles were overrepresented, in general they were older, more often diagnosed with tetraplegia, had a longer TSI and a higher education, and were more often born in a foreign country to their current residing country than participants from lower quartiles. CONCLUSIONS The successful implementation of the InSCI survey enables to compare the lived experience of persons with SCI across the globe and constitutes a crucial starting point for an international learning experience in SCI.

中文翻译：

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在 22 个国家/地区实施的国际脊髓损伤 (InSCI) 社区调查的队列概况

目的通过描述招募和数据收集程序来详细说明第一次国际脊髓损伤 (InSCI) 社区调查的方法学特征，并报告按国家和收入设置划分的参与者的招募结果和基本特征。设计 横断面调查。设置代表所有六个世卫组织区域的 22 个国家，社区设置。参与者 n=12,591 名年龄≥18 岁的创伤性或非创伤性 SCI 患者。干预措施 不适用。主要结果 招聘和数据收集程序；招聘结果；参与者的基本特征。结果 8 个国家使用预定义的抽样框架，14 个国家使用便利抽样进行招聘。大多数国家通过专门的康复设施、患者组织、和/或急症和综合医院。接近潜在参与者的模式取决于抽样策略，并提供了多种响应模式以最大限度地提高参与度。接触率从33%-98%不等；合作率29%-90%，响应率23%-54%。大多数参与者是男性 (73%)，年龄中位数为 52 (IQR 40-63)，60% 有伴侣，8% 报告说他们出生在另一个国家而不是目前居住的国家，教育年限中位数为 12 年 (IQR 9-15）。截瘫是主要诊断 (63%)，外伤性病因是受伤的主要原因 (81%)，受伤后中位时间 (TSI) 为 9 年 (IQR 4-19)。来自较高收入四分位数的参与者人数过多，一般来说他们年龄较大，更常被诊断为四肢瘫痪，TSI 时间较长，受过高等教育，并且与来自较低四分位数的参与者相比，他们更多地出生在他们目前居住的国家的外国。结论 InSCI 调查的成功实施能够比较全球 SCI 患者的生活经历，并构成 SCI 国际学习经验的重要起点。