• The online Community for people with spinal cord injury, their relatives and friends

  • The online Community for people with spinal cord injury, their relatives and friends

  • The online Community for people with spinal cord injury, their relatives and friends

  • The online Community for people with spinal cord injury, their relatives and friends

  • The online Community for people with spinal cord injury, their relatives and friends

Design of the Swiss Spinal Cord Injury Study (SwiSCI)

Author: Teresa Brinkel (Swiss Paraplegic Research)
 
SwiSCI, the most comprehensive study on spinal cord injury in Switzerland is a so called cohort study. This means that people concerned are surveyed over a long period of time in order to examine the development of their health and quality of life. Potential problems, e.g., in the Swiss supply system, can thus be detected.

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.

Comments (0)

There are no comments on this topic yet.
Be the first to comment!

Rate this post

Forum
Most Recent Answers
5250 odyssita
Explaining what life with a chronic disability is like
Hi cAro, all the best for your research! I am very curious to hear about the results once they are being published. Thank you for researching this...
6 odyssita 2018-05-02
5166 Wheelie
Scewo
Good news for all who would like to try out the Scewo by themselves: according the Scewo constructors, the feedback on their invention was so...
5 Johannes 2018-03-12
Ask the Expert
Most Recent Answers
3 Dr._Hans_old 2015-07-20
3 Dr._Hans_old 2015-05-07

Blog
Most Recent Blog Posts
Wheelchair chefs: the success stories
Disabilities matter but ambition rules
0
lorenzo.deluigi 2020-07-22 In News
Make to Care, a competition promoting innovations
Which one of these four innovative projects convinces you the most?
0
kitwan 2020-07-02 In Society
Wheelchair users’ game of thorns
The fight for personal space, safety and independence
0
Wiki
Most Read
Anatomy and physiology of respiration
Breathing is the most normal thing in the world for us. We hardly think about it, even though we breathe in and out about 20,000 times per day. We breathe more when we are active and exerting ourselves, and we breathe less when we are...
Social skills increase quality of life
Today strawberry yogurt is on Anna’s* grocery list. In front of the dairy section she notices that she cannot reach the yogurt sitting in a wheelchair. Many stressed people are rushing through the crowded store during rush hour and she does not...
Mobilisation / Transferring
What do I need to consider with regard to the shoulders? The shoulder is the most heavily-strained joint with regard to mobilisation – that applies to sitting up and transferring. It is therefore important to protect the shoulders whenever it is...

About the Community
Most Recent Topics
2020-07-16 In Latest
Free masks for high-risk patients with SCI
People with high-level tetraplegia, paraplegics of higher age and those with pre-existing health conditions are more susceptible to a severe development of COVID-19. For this reason, the European...
0
2020-07-03 In Latest
A COVID inspiration porn?
Over three months since the COVID-19 declared pandemic, many countries are still debating whether to make wearing face masks compulsory to help prevent the spread of the disease. Noam Gershony, an...
0
2020-06-08 In Latest
The world’s first MSc program in disability, design and innovation
Disability innovation is more than just a good idea. We’ve heard enough stories how disability innovations can go wrong with unrealistic expectations and insufficient market research. This needs to...
0

Contact

Swiss Paraplegic Research
Guido A. Zäch Strasse 4
6207 Nottwil
Switzerland

This email address is being protected from spambots. You need JavaScript enabled to view it.
T 0800 727 236 (from Switzerland, free of charge)
T +41 41 939 65 55 (from other countries, charges apply)

Be part of the Community – sign up now!