Design of the Swiss Spinal Cord Injury Study (SwiSCI)

What is the aim of this article?

The aim of this article is to present the methodical structure of the SwiSCI study. The term “study design” refers to all approaches adopted within the course of a study. SwiSCI is a cohort study – as such it aims at collecting data of people with spinal cord injury (SCI) in Switzerland over the course of a life span. The objective is to learn more about the life situation, functioning, health and quality of life of the people concerned. The study captures elements such as health-related behaviour, health care, social participation, labour market integration and measures to support healthy ageing. Thus, problems and needs of people with SCI can be identified systematically.

How is the study designed?

The SwiSCI study consists of three studies, the so-called “pathways”. Taken together, they form a continuous cohort study. The people surveyed were paraplegics or tetraplegics in Switzerland who are older than 16 years. These people are contacted by SwiSCI-collaboration partners (see below), and in case they agree to participate, they will be questioned every five years.

Pathway 1 is a study based on medical records, Pathway 2 is a population survey among people with spinal cord injury and Pathway 3 includes people in rehabilitation clinics that have just started first rehabilitation right after SCI.

Pathway 1

The aim of this part of the study is to collect personal details of people whose SCI occurred before the launch of Pathway 3 in 2013. The relevant data is extracted from the medical records and includes information such as socio-demographic data as well as information with regard to the cause of the SCI, co-morbid injuries and diseases, surgery methods and medication, the neurological status and the living conditions and therapeutic treatment after leaving the hospital. The retrospective study is based on the existing files and does not include any surveys or tests.

Pathway 2

The second part of the study includes a survey carried out among people with SCI. The collected data provides information on the current situation of people with SCI in Switzerland with regard to their life circumstances, job and health care. This includes information about the medical condition, health-related behaviour, everyday life, professional life, but also about the personal environment and general satisfaction.

The participants receive questionnaires on various topics that they can answer by mail, online or via telephone. This survey was carried out for the first time between September 2011 and March 2013 and is going to be repeated every five years.

Pathway 3

Pathway 3 includes people with acute spinal cord injuries who are treated in one of the four collaborating rehabilitation centres for people with SCI. In the hospital, data is collected with regard to the medical condition, pain, family and financial situation and health-related behaviour but also concerning the progress made during rehabilitation and with respect to functioning. This is done by means of questionnaires and clinical tests on functioning. Most of the tests are part of the clinical routine examinations.

This data collection helps to analyse the effectiveness of assistive devices so that their use can be adapted. The study results enable optimization of rehabilitation as well as the provision and care situation at home. People with SCI can thus be supported in a more targeted way after first rehabilitation, in order to ensure the highest possible level of autonomy and quality of life.

From a scientific point of view, this prospective study is especially important as all new cases of SCI in Switzerland can be recorded in the future. The data quality is very high because the same collection method is used for all participants. For the first time, well-founded conclusions with regard to the basic data of SCI, such as the number of new cases per year, the share of paraplegics/tetraplegics or the cause of the spinal cord injury. This data collection then can contribute to carrying out scientific more efficiently in the future; preventive measures will be more target-oriented and costs in the health care sector can be better planned.

What is the meaning of this study for people affected?

The information collected in the course of the three studies provide scientific findings on the life provision and care situation of people with SCI. Thus the most urging problems and needs can be identified. Currently scientists do not know yet whether the most challenging problems that people with SCI are facing can be solved by means of the existing health care and social programs. Due to the collected data, the SwiSCI study will help to identify opportunities for improvements in the Swiss supply system, in order to minimise the negative effects of disability and increase the quality of life.

The study design of SwiSCI includes a new survey every five years. The long-term character of the study makes it possible to take developments into account later on and also enables forecasts. For example, scientists can monitor the development of the medical and therapeutic treatment over a certain period of time and thus get information about the long-term influence on functioning and the quality of life of the people concerned. Therefore, the study helps to improve the health care situation and social framework conditions to ensure the highest possible level of autonomy, a comprehensive integration as well as a healthy ageing process.

Who conducts and finances the study?

The SwiSCI study is carried out by Swiss Paraplegic Research (SPF) in Nottwil, Switzerland, in collaboration with leading rehabilitation centres for people with SCI in Switzerland: The Swiss Paraplegic Centre REHAB in Basel, the Paraplegic Centre at the Balgrist University Hospital in Zurich, the Swiss Paraplegic Centre (SPZ) in Nottwil and the “Clinique Romande de Réadaptation” in Sion. Other important collaboration partners of SwiSCI are the Swiss Paraplegic Foundation, the Swiss Paraplegics Association, ParaHelp – an outpatient nursing advisory service - and the SUVA insurance services.