The second SwiSCI Community Survey (5 years follow-up) was successfully conducted between March 2017 and March 2018.
Compared to 2012, only two, instead of three questionnaires were sequentially sent with an interval of four to six weeks to the participants. Reduction of participants' burden and drop-out risk as well as improvement of feasibility and effectiveness were the main reasons for this adaptation.
The target of the first five-year follow-up after baseline assessment in 2012 was to offer a comprehensive 360° view on living with SCI in Switzerland, and to offer datasets allowing the combination from both the 2012 and 2017 SwiSCI surveys. Based on the second survey we are now able to give a clearer sense of survivorship and prevalence of secondary health conditions in the SCI poulation. In addition, we can give a full picture of how SCI affects mental health and life satisfaction, how psychological resources can affect the experience of pain, and how SCI impacts social participation in major life domains, especially employment.
The sampling frame consisted of the existing SwiSCI contact database from 2012 but was enriched with patient records from the specialized SCI-rehabilitation clinics of the years 1967–2004 and 2010–2013. Moreover, eligible patients of the fourth specialized SCI center (Balgrist University Hospital, Zurich) as well as persons who were diagnosed with SCI between the first and second survey and recently discharged from first rehabilitation (i.e. participants from the first rehabilitation cohort) were added to the database.
In total the survey 2017 applied 322 questionnaire items. To allow for longitudinal analysis the questionnaire included all relevant items from the 2012 survey modules: health behavior, personal factors, work, and health services research. In addition the survey included new hypothesis-driven items.
The dataset included the following elements:
Here you find the English reference questionnaire of Module 1 and Module 2 of the survey 2017, as well as an English source documentation of both modules: