InSCI represents the first international effort to systematically collect information on the lives of individuals with SCI across the globe.
It comes on the back of a WHO report from 2013 which stated that we are lacking a comprehensive description of the functioning of individuals living with SCI across nations, in different settings of economic development and in different healthcare and rehabilitation systems.
'Functioning' is understood to be the outcome of a dynamic interaction between an individual's health condition and contextual factors (personal factors and the environment in which an individual lives).
The survey looks at diverse healthcare systems and has the aim of providing a starting point for identifying how societies can respond to the needs of individuals with SCI.
Recruits into the survey across the 22 countries were all aged over 18 years suffering from traumatic or non-traumatic spinal cord injury. The UK was not one of the 22 countries and it also seems to be that there were very small numbers from, for example, the US.
The list (with numbers of participants) is as follows:
- Australia 1,579
- Brazil 201
- China 1,354
- France 413
- Germany 1,617
- Greece 200
- Indonesia 201
- Italy 206
- Japan 302
- Lithuania 218
- Malaysia 298
- Morocco 385
- Netherlands 260
- Norway 610
- Poland 971
- Romania 216
- South Africa 200
- South Korea 890
- Spain 417
- Switzerland 1,530
- Thailand 320
- United States 203
The survey was undertaken between 2017 and 2019. The aim is to repeat it at five year intervals to develop both longitudinal and updated data. The coordinating Institute is the Swiss Paraplegic Research Centre.
A 125 item self-reported questionnaire was created by SPRC. For anyone interested the questionnaire can be downloaded here. The data model consists of the following main components:
- body functions and structures;
- activities and participation;
- environmental and personal;
- lesion characteristics; and
- appraisal of health and well-being.
Information on age, sex, education, partnership status, foreign country of birth, lesion severity, time since injury [TSI], age at injury and aetiology has been used to describe the study population.
Response rates varied from country to country with 23% responding to the invitation in China up to 54% responding in South Africa. The majority of participants in all countries were men (73%) with the median age at the time of survey being 52 years. The median TSI was 9 years and in all countries apart from Japan more participants were diagnosed with paraplegia (63%) than with tetraplegia (37%).
Overall 38% reported complete and 62% reported incomplete lesions.
At 81% traumatic SCI was the major cause of injury within participants.
It has to be recognised that for some of the collaborating countries the survey is the first comprehensive and systematic attempt at the collection of information on community dwelling individuals with SCI. The difficulties in establishing representative samples in some countries has also led to potentially limited validity and we cannot ignore that the likelihood of survival after SCI depends to some extent on a country's income level. Mortality bias may also affect comparability between countries.
It will be interesting to see how the data flowing from InSCI is interpreted and although applicability to the UK may not be obvious at first sight I am sure that there will be some interesting data when we start to get under the skin of the survey results: one name that I recognized from the steering committee was that of James Middleton (Scientific Committee, Australia) whose life expectancy data is often rolled out as representing the contrary view to the interpretation of the UK and US databases.
If you require any further information, please contact Ian Slater or your usual DWF contact.