I thought it worthwhile sharing some information in relation to the National Spinal Cord Injury Database within the US particularly given that I recently attended a presentation by Yuying Chen, MD, PhD, Director of the NSCISC based at the University of Alabama at Birmingham.
29 Model Centres across the US have contributed information to the database which has been collecting information since 1970. It is a longitudinal database with follow up at 1, 5, 10 and every 5 years thereafter.
The numbers are staggering: close to 119,000 follow up visits with the longest follow up being 40 years. There are 46,191 participants within the database which aims to assist the understanding of the longitudinal course of living with spinal injury and even the costs of care. In order to qualify for inclusion patients must have suffered a traumatic SCI and there must be sensory / motor impairment.
Plans for the future include a merger with the US National Trauma Data Bank: a probabilistic matching algorithm will be used to facilitate this merger with the goal of enhancing the richness of the information available.
Although the headline is that the database is open access, for anyone who is not based in one of the Model Centres the reality is that there is a complicated process of proposal and approval before information will be released.
Some headlines from the 2017 data sheet:
- Average age at injury has increased from 29 in 1970's to 42 years currently;
- Males account for 81% of new SCI cases;
- Vehicle crashes are the primary cause (31.5%) followed by falls 25.3%), violence (primarily gunshot wounds – 10.4%) and sports / recreation activities (motorcycle crashes 6.8%, diving 4.7%, bicycles 2.8%);
- 45.8% incomplete tetraplegia / 20.9% incomplete paraplegia / 19.7% complete paraplegia / 13.2% complete tetraplegia;
- Less than 1% of persons experienced complete neurological recovery at the time of discharge;
- Percentage of persons divorced increases over time;
- Percentage of persons employed increases from 13% at Year one to a third at 20 years post injury;
- About 30% of persons are re-hospitalised one or more times during any given year;
- Average remaining years of life [for persons with SCI] have not improved since 1980's;
- Mortality rates significantly higher during the first year after injury;
- Pneumonia and septicaemia are the main causes of death (there has been no change in the mortality rate for septicaemia in the past 40 years).
These are just some headlines, not all of which [gunshot wounds] would be relevant to the UK but there is such a rich source of data that, with sufficient thought and pre-planning, it should be possible to inform and educate: more accidents occur over weekends and in warmer weather and whilst motor vehicle accidents were the primary cause up to age 45, falls became the leading cause after age 45.
Before looking at the data I would have assumed that most falls were from height but that is not the case: 5.7% were a fall on the same level (slipping / tripping), 4.5% were on stairs with only 2.5% from a ladder.
I have to admit I find all this very interesting. History generally informs the future and I hope that even this very brief article illustrates that there are some rich sources of data available to help us try to predict more about what living with SCI could mean (both for the patient and any insurer faced with a claim).