SwiSCI - Community survey spinal cord injury
Müller R, Landmann G, Béchir M, Hinrichs T, Arnet U, Jordan X, Brinkhof M, for the SwiSCI Study Group: Chronic pain, depression and quality of life in individuals with spinal cord injury: Mediating role of participation. J Rehabil Med 2017; 49: 489–496.
Geyh S, Kunz S, Müller R, Peter C: Describing functioning and health after spinal cord injury in the light of psychological–personal factors. Journal of Rehabilitation Medicine 2016; 48: 219-234.
Rubinelli S, Glässel A, Brach M: From the person’s perspective: Perceived problems in functioning among individuals with spinal cord injury in Switzerland, Journal of Rehabilitation Medicine 2016; 48: 235-243.
Gemperli A, Ronca E, Scheel-Sailer A, Koch HG, Brach M, Trezzini B, SwiSCI Study Group.: Health care utilization in persons with spinal cord injury: part 1 - outpatient services. Spinal Cord. 2017 May 2. doi: 10.1038/sc.2017.44. [Epub ahead of print].
Ronca E, Scheel-Sailer A, Koch HG, Gemperli A, SwiSCI Study Group: Health care utilization in persons with spinal cord injury: part 2 - determinants, geographic variation and comparison with the general population. Spinal Cord. 2017 May 2. doi: 10.1038/sc.2017.38. [Epub ahead of print].
Brinkhof MWG, Al-Khodairy A, Eriks-Hoogland I, Fekete C, Hinrichs T, Hund-Georgiadis M, Meier S, Scheel-Sailer A, Schubert M, Reinhardt JD: Health conditions in people with spinal cord injury: Contemporary evidence from a population-based community survey in Switzerland, Journal of Rehabilitation Medicine, 2016 Feb;48(2):197-209. doi: 10.2340/16501977-2039.
Fekete C, Siegrist J, Reinhardt JD, Brinkhof M, for the SwiSCI Study Group: Is Financial Hardship Associated with Reduced Health in Disability? The Case of Spinal Cord Injury in Switzerland. PLOS One, February 2014, Volume 9, Issue 2.
Reinhardt JD, Post MWM, Fekete C, Trezzini B, Brinkhof MWG, on behalf of SwiSCI Study Group: Labor Market Integration of People with Disabilities: Results from the Swiss Spinal Cord Injury Cohort Study. PLOS ONE, 2016; 11(11): e0166955. Published online 2016 Nov 22. doi: 10.1371/journal.pone.0166955
Fekete C, Brinkhof MWG, Tough H, Siegrist J: Longitudinal study of social participation and well-being among persons with spinal cord injury and their partners (pro-WELL). BMJ Open 2017;7.
Prodinger B, Ballert CS, Brinkhof MWG, Tennant A, Post MWM: Metric properties of the Spinal Cord Independence Measure - Self report in a community survey, Journal of Rehabilitation Medicine 2016; 48: 149-164.
Mader L, Post MWM, Ballert CS, Michel G, Stucki G, Brinkhof MWG: Metric properties of the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation) in persons with spinal cord injury living in Switzerland. Journal of Rehabilitation Medicine 2016; 48: 165-174.
Fekete C, Segerer W, Gemperli A, Brinkhof MWG, for the SwiSCI Study Group: Participation rates, response bias and response behaviour in the community survey of the Swiss Spinal Cord Injury Cohort Study (SwiSCI). BMC Medical Research Methodology 2015; 15: 80. Published online 2015 Oct 8. doi: 10.1186/s12874-015-0076-0.
Bertschy S, Geyh S, Pannek J, Meyer T: Perceived needs and experiences with healthcare services of women with spinal cord injury during pregnancy and childbirth — a qualitative content analysis of focus groups and individual interviews. BMC Health Services Research, 2015 Jun 16;15:234. doi: 10.1186/s12913-015-0878-0.
Müller R, Brinkhof MW, Arnet U, Hinrichs T, Landmann G, Jordan X, Béchir M: Prevalence and associated factors of pain in the Swiss spinal cord injury population. Spinal Cord. 2016 Nov 15.
Ballert CS, Post MWM, Brinkhof MWG, Reinhardt JD: Psychometric properties of the Nottwil Environmental Factors Inventory Short Form. Archives of Physical Medicine and Rehabilitation. 2015 Feb;96(2):233-40. doi: 10.1016/j.apmr.2014.09.004. Epub 2014 Sep 28.
Peter C, Schulenberg SE, Buchanan EM, Prodinger B, Geyh S: Rasch analysis of measurement instruments capturing psychological personal factors in persons with spinal cord injury. Journal of Rehabilitation Medicine 2016; 48: 175-188.
The second SwiSCI community survey was successfully conducted between March 2017 and March 2018 and recruited a substantial proportion of the spinal cord injury population in Switzerland. A Special Edition of Spinal Cord summarizes important findings of the survey.
Gross-Hemmi M, Post M, Ehrmann C, Fekete C, Hasnan N, Middleton J, Reinhardt J, Strøm V, Stucki G: Study Protocol of the International Spinal Cord Injury (InSCI) Community Survey. American Journal of Physical Medicine & Rehabilitation, Volume 96, Number 2 (Suppl), February 2017.
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).
Download: English reference questionnaires
Here you find the English reference questionnaire of Module 1 and Module 2 of the survey 2012:
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:
- Brief ICF core set for SCI (long-term context)
- ICF rehabilitation set
- selected ctegories on personal factors
- measures for subjective health and wellbeing
Download: English reference questionnaires
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:
Marti A, Boes S, Lay V, Escorpizo R, Trezzini B: The association between chronological age, age at injury and employment: Is there a mediating effect of secondary health conditions? Spinal Cord. 2015 Oct 6. doi: 10.1038/sc.2015.159.
Fekete C, Wahrendorf M, Reinhardt JD, Post MW, Siegrist J.: Work stress and quality of life in persons with disabilities from four European countries: the case of spinal cord injury. 2014 Jun;23(5):1661-71. doi: 10.1007/s11136-013-0610-7. Epub 2014 Jan 3.