The particular challenge of the Survey 2012 was to obtain a comprehensive and detailed picture of the participants' situation and to collect prevalence data on functioning and disability. Based on these data we were able to describe and better understand relevant aspects of life in the Swiss SCI community.
Eligible for the survey were all community-dwelling persons aged over 16 years with traumatic or non-traumatic SCI living in Switzerland. Excluded were persons with congenital conditions leading to SCI (e.g. spina bifida), new SCI in the context of palliative care, neurodegenerative disorders (e.g. multiple sclerosis and amyotrophic lateral sclerosis), and Guillain-Barré syndrome.
Due to the absence of a central registry, a broad sampling frame of the target population was applied:
- a contact database involving membership records of the organization representing people living with SCI in Switzerland (Swiss Paraplegic Association)
- available patient records of SCI-specific home care institutions (Parahelp)
- patient records from 2005 to 2009 of three out of four specialized SCI-rehabilitation centers in Switzerland (Swiss Paraplegic Center, Nottwil; REHAB Basel; Clinique Romande de Réadaptation, Sion)
Out of 3,144 eligible persons 1,549 participated in the first two modules (cumulative response rate 49.3%). A total of 1,528 out of 1549 persons who completed these modules were invited to participate in 1 of 3 final modules. 1331 participants completeted the last module.
In total SwiSCI applied 610 questionnaire items. The dataset included the following elements:
- categories of the minimal ICF Generic Set
- Brief ICF Core Set for SCI-early post-acute
- Brief ICF Core Set for SCI-long term
- Statistical Set
- Relevant personal factors
Modular structure of the SwiSCI survey
The survey 2011-2013 contained three subsequent waves that were sent out with an interval of about three months:
The first wave (Starter Module) was a brief 19-item questionnaire on basic socio-demographics, lesion characteristics and the care situation. The second wave (Basic Module) was a 124-item questionnaire comprising detailed information on functioning, health, environmental and personal factors. The third wave (Specific Modules) consisted of three thematically different specific modules to which participants of the second wave are randomly assigned. The specific modules included the Health Behavior and Personal Factors Module (186 items), the Work Module (79 items), and the Health Services Research Module (202 items).